Chronic Fatigue Syndrome: Death threats for scientists?

By Carl Zimmer | August 21, 2011 1:13 pm

I hate to say I told you so.

A few months ago I was asked to give a couple talks to the skeptic community. Since I had just published a book about viruses, I decided to talk about the way myths so often crop up around them, and how a properly skeptical person should think about viruses. Over the centuries, viruses have been encircled by urban legends, superstitions, and conspiracy theories. The name “influenza” dates back to a time when European physicians believed the flu was due to the influence of the stars. More recently, HIV has been subject to all sorts of myths, from stories that it was created by the CIA to claims that it is not the cause of AIDS. The autism-vaccine controversy has been fueled in part by myths about viruses–namely, that the risk from vaccines is far greater than the risk from viruses like measles.

In my talks, I speculated that the very nature of viruses makes it easy for people to grab onto these kinds of explanations, and to reject scientific evidence that might argue against them. Viruses are the smallest living things on Earth, and yet they can have worldwide effects. They may only contain a few genes, yet they can hold their own against all of modern medicine. And the reality of viruses can seem downright unbelievable. Rabbits with horns may sound like yet another myth–but there’s some truth at the core of it. So it may be psychologically easy to endow viruses with extraordinary powers, or to deny them any power at all.

At the end of my talk, I told my audiences that we might be at the beginning of another one of these viral episodes. I described how a virus called XMRV had been recently linked to chronic fatigue, a debilitating condition that may affect 60 million people worldwide. Since the initial report, there had been some attempts to replicate the link, but they had failed. At the same time, some people with chronic fatigue decided the cause of their suffering had been found, and now the only course of action was to take drugs that could wipe out the virus. (Here’s a good piece at the time from Ewen Callaway at Nature [free, reg. required])

In my talk, I said that even if the link was rejected, it had already found a community that would continue to embrace it. Since then, more studies have come out, and they’ve been so negative that many experts have concluded the initial link was a matter of contamination. And today in the Guardian, Robin McKie reports that XMRV proponents are now issuing death threats to scientists who have done this research.

The scientists he talks to have some pretty startling things to say. A protestor shows up at a talk by a scientist, armed with a knife. A scientist backs out of a collaboration for fear of being shot.

I should say I take this article with a grain of salt. McKie writes that “according to the police, the militants are now considered to be as dangerous and uncompromising as animal rights extremists.” But the catalog of harassment he presents made up mainly of obnoxious emails. No one’s bombed a lab. And even if there are some people who are sending XMRV-related death threats, they could well just be a handful of people, rather than any sort of broad movement. In other words, I really hope that my prediction turns out to be wrong.

Update: Thanks to Vaughan Bell for alerting me to this British Medical Journal article by Nigel Hawkes in June on the same issue. Combined, the two articles become more worrisome.

Update #2: With a fast-growing comment thread, I just want to remind everyone that, while I do not take responsibility for the content of the comments, I do moderate them according to my “light but firm” comment policy. A spirited debate is fine with me; it’s fine for patients to complain about how they’re treated by the medical community. But if (like one of today’s commenters) you declare that a scientist has committed “a human rights crime” against patients, don’t wait up tonight to see your comment come out of moderation. It won’t. You’re free to write the stuff on your own blog; I’m free to decide not to include it here.

CATEGORIZED UNDER: A Planet of Viruses

Comments (124)

  1. Daniel J. Andrews

    Sounds sort of similar to the people who suffer from chronic Lyme’s disease. That they are suffering is obvious, but what exactly causes the suffering seems to be unknown which isn’t what you want to hear when you’re not well.

  2. One of the first papers to show negative results about XMRV connection was published in PLoS ONE at the time I worked there. That was the first time that I had to make a serious use of my moderating skills in the comments (which, as you know, are not THAT active on most PLoS papers)…and we got mail as well. I think they are bigger, angrier, and better organized than you think.

  3. No evidence whatsoever has been produced by any of these researchers who are accusing people suffering with Myalgic Encephalomyelitis (M.E.) of harrassing them. People who suffer from this disease are in constant pain and they are often disabled and homebound. It is difficult to imagine these healthy researchers really feeling threatened by patients who are often too sick to leave their homes.

    In any group, however, there may be a few people who are unbalanced and say unwise things. Should a whole category of medical patients be accused of proposed wrongdoing if and when a tiny number of people who are believed to have their same diagnosis make the mistake of saying words which can be interpreted as threats? If we do this, then any group should be accused the same way.

    Why should people suffering with a real physical illness be continually denied treatment because some researchers believe the illness to be psychological? That is the real question. Simon Wessely and his friends in the psychology business have been denying effective treatment to people who are suffering brain lesions, continual physical pain, inability to work and other patients are dying from the results of this illness. This has been going on for years. THIS IS THE REAL PROBLEM. The problem is not a few unkind words being said to these psychologists who are denying treatment for physical illness; the problem is the denial of treatment.

  4. Angela Kennedy

    Regarding the ‘CFS militants’ article – this appears part of a sustained, possibly planned media campaign, that started some months ago, which may have been interrupted by the English riots: or this latest article may have been printed to capitalise on current fears of violence resulting from those riots.

    There are a number of problems around these articles/radio programmes:

    1. The allegations are unsafe. For example, the comment by some unknown that “you will all pay” was publicly deemed a ‘death threat’ (when it indicated possibly more a prediction of eventual public accountability for the mistreatment of ME/CFS sufferers). Ironically, David Cameron has used the phrase “you will pay” towards rioters in recent days, without it being deemed a ‘death threat’!

    2. But particularly unsafe has been the categorisation of legitimate action by ME/CFS sufferers and their supporters such as requests under FOI legislation, official complaints through various public agencies etc. as ‘malicious harassment’, or ‘abuse’ or ‘intimidation. If one reads these articles or listens to the radio programmes one will see how legitimate actions are juxtaposed with alleged acts of criminal harassment to present this idea that legitimate actions are criminal harassment! It is quite shocking how it is done.

    3. After making allegations of violence and harassment etc. These articles then go on to misrepresent any objections to psychogenic dismissal of the illnesses diagnosed as ME or CFS. As objectors have been insinuated as ‘extremist’, no chance is given to objectors to put forward their objections. Even where the ‘ME’ charities have been interviewed, the representatives continue the unsafe allegations and conflation of legitimate behaviour with ‘abuse’, ‘harassment’ etc. It should also be noted that certain charities have been critiqued by many sufferers and supporters for many years for not representing their concerns even adequately.

    I was once falsely accused of ‘personally harassing’ Professor Wessely by a Wikipedia administrator, claiming Wessely had told him this himself. I take an opposing public position to Professor Wessely’s, both on a political and academic level. I have NEVER harassed Professor Wessely. I have never even written to him, though he once wrote an unsolicited (and somewhat discomfiting) email to me, after a critical comment I once made about flaws in psychogenic explanations was once used in a parliamentary debate in 2004. When I wrote to Professor Wessely’s employers to ask him to clarify he had had no part in the libel against me on Wikipedia in 2007, they refused to provide that clarification. A few weeks ago in the BMJ, I found that people who wrote to Professor Wessely’s employers were juxtaposed with alleged ‘death threat’ makers, as harassers!

    I’m also someone who has publicly and offically complained about a recently published trial of psychological ‘treatments’ in the Lancet (the PACE trial) and some really unsafe (I mean dangerous to patients) claims made on the back of this trial. This is not harassment, unless any official enquiry, complaint, or testimony counts as such, which it doesn’t, of course. I also don’t think reasonable objection or complaint is more dangerous to a public figure, than being a soldier on active service in Afghanistan or Iraq, like those soldiers killed or disabled in those war regions, for example.

  5. Sam

    An ME patient died last week from the disease. Yet, the same people who have blocked biomedical research into ME and who have vested interests to re-classify the disease are given air time to whinge about people not taking this well. Legitimate complaints should not be disguised as attacks or harassment. We want biomedical funding and we want to get back those ME scientists who were driven from the field due to the refusal of the medical establishment to continue to fund research into the already proven neurological disease ME. We don’t want these sorts of people, who don’t study ME and are only interested in fatigue. We cannot gain anything from those who refuse to use science in their studies and instead rely on their own personal prejudices.

    Free ME patients from the Wessely School!!!

    The human gamma retorvirus (HGRVs) link has not been disproved. Emanate scientists around the world are in agreement that people with ME/cfs and prostate cancer are infected. The labs finding the viruses are now in double figures. Ruscetti, Mikovits, Alter, Lo, Cabrera, those in Russian, Germany, Norway, Japan. The NIH is frantically checking their blood supply. The MRC is still continuing research. The number of papers is only increasing.

    XMRV is a polytropic and xenotropic hybrid. The CDC now say it is also ecotropic. Lo et al. discovered polytropic,modified polytropic, and xenotropic sequences. How is that different? If you doubt it read Towers latest paper.

    The new WPI sequences in the GenBank are polytropic and modified polytropic.

    Lombardi et al. used an assay which had already been shown capable of detecting HGRVs. They then dropped the annealing temperature to increase sensitivity. Lo also dropped his annealing temperatures, but wisely used multiple primers, but used different outer primers to Lombardi, so he missed more of the xenotropic variants. Still he did find xenotropic gag sequences.

    Still NO lab has attempted to replicate the methodology in Lombardi et al. All the negative papers have failed to clinically validate their assays. They have no scientific proof the virus was not in the people they tested. If this was a HIV assay, they would be going to jail for not providing diagnostic evidence.

    Then there is the new XMRV variant in the GenBank called JHK. That was discovered in 1989.

  6. Kelly Connor

    Dear Sir,

    Thank you for your attempt at objectivity. However, it is a bit naive to assume that research in this area is unbiased. There is huge financial incentive to keep diseases such as Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Chronic Lyme Disease, and Gulf War Syndrome in the realm of myth. Among the financial beneficiaries are the government and health insurance companies.

    As an expert in virology, you would know that new viral strains appear all the time. Also that mouse DNA contamination has been an issue for cell lines for many years (check out contamination of vaccines, for example). I wonder how you explain the antibody response to a contaminant?

    It is easy to reject the original study (which included replication at Cleveland Clinic and NCI), and apparently, it is easy to accept studies which made no attempt to replicate the original studies. That is not objective, and while I don’t question your sincerity, I wonder whether you have actually looked at the body of literature on XMRV and HGRVs in general.

    As far as death threats go, I thank you for your attempt to deflect some of the sensationalism to which all media are prone nowadays. It’s also possible that the “psychiatric lobby,” active for 30 years in the UK and at the CDC, would have an interest in casting the sufferers of these diseases as psychologically unbalanced and even dangerous. If you look deeper, there is a financial incentive to do this.

    In my experience, comments can be likened to road rage, in that the commentor is free to engage tactics less likely to be used in a face-to-face encounter. Don’t judge the pathogen by the comments on an article or a forum. We need to be looking at the pathogen(s) and we should make very sure that XMRV is a myth before any more people are possibly infected. It is a mistake to assume that if this were real, it would be widely accepted; that is not the historical response to new pathogens.

  7. Sam

    @Coturnix

    McClure changed every variable from the Lombardi paper and did not clinically validate her assays. After reviewing the paper for 24 hours, what made you decide it should be published? Especially when it did not contain one ME/cfs patient.

  8. I have to agree with the first few comments – i have been ill with me/cfs for more than 30 years and in all that time i’ve heard of maybe 10 doctors who worked tirelessly to give the world a negative view of the diseases known by ME and ME/CFS and chronic Lyme and Fibromyalgia to name a few. (probably more, but my memory has been gone since i got sick). Some of those doctor’s names are: Alter/Lo/Wessely/Mcclure/Ruscetti/Singh/WPI/Khastle/Carter/Kennedy/WPI and Coffin – these are names that pop up on “scientific” talk shows and in “scientific” magazine/enet shows over and over (some listed above constantly whinge and their tune inevitably goes “The public knows I’m incompetent!” How does their demonstrated self-loathing and recrimination make the disabled public responsible for their greed and incompetence.? I truly want to know why we have been slandered when the CDC and NCI and NIH and ME/CFS and CFIDS Foundantion(to name a very few) have publicly said over the last 30 years that AIDS/HIV and other chronic infectious diseases are “in our heads” and not of our bodies? When did the ability to stay a student for 4-12 years become an automatic petition for sainthood? I really, really would like someone to give a sane explanation for these doctors’ public behavior!

  9. Karen

    This is memory of all the ME patients we have lost and for those that suffered at the hands of some within the medical profession. They are gone but not forgotten.
    http://www.ncf-net.org/memorial.htm

  10. There are no excuses for someone who makes death threats, or even threats. It’s a crime. If they received those threats by email or snail mail, you have proof. If someone shows up with a knife at a talk, you have witnesses. Call the police. End of story.

    Data without context is noise.
    - data: scientists “claim” to have received “death threats” by some patients. Is there proof for those claims? I don’t doubt that there were threats, but death threats? How many death threats or people who made those threats are we talking about? A couple? A dozen? A couple of dozen?
    - context: there are 60 million patients according to your article

    If a dozen football fans vandalize some cars after a match, does that mean that all football fans are vandals?

    I rest my case.

    It annoys me that the debate surrounding XMRV got so emotional. There are still some ongoing studies, but it is my opinion, and has been for a while, that XMRV is just another dead end. And it is also my opinion that a lot of articles in mainstream media about XMRV or ME/CFS aren’t exactly examples of good reporting, let alone investigative journalism.

  11. What we can do here is to lower the temperature. Let’s all just agree to condemn the threats. They cannot be justified.

  12. All good points. I do take issue with a premise you have. The aggressive behavior you speak of did not start with XMRV. Even Wessley said he left ME/CFS research years ago because of his treatment. Yes, a group of patients have have latched onto XMRV as their only hope for freedom, and how much of their message is from wish and how much is evidence is hard to discern, especially to the layman. Each one must look at the clams in light of evidence and make their own decision, until the studies bring a final conclusion. For me, a retrovirus makes sense when looking at the physical abnormalities in these patients. However, other factors would clearly play a part, such as other viruses, stress, genetics and who knows what else.

    I think it quite arrogant for scientists to believe that if they don’t know of the virus, then it doesn’t exist. If they can’t detect it, then it doesn’t exist. Yet, with viruses jumping species continually and mutating, and the admitted limitations of identifying viruses (see Ian Lipkin’s comments), it is not only possible but very likely there are many human retroviruses that have not yet been discovered. I am not tied to XMRV, but the book is not closed on that, yet. Remember the trouble in finding HIV because the cells infected died too quickly? Could something similar be happening to ME/CFS patients in their natural killer cells, which studies show don’t function right in ME/CFS patients?

    So, the aggressive tone of these patients did not start with XMRV. I know many who have been in the struggle for over two decades. They have their stories of other desperately hopeless patients going too far. But, they are the minority, no, the teaspoon of sand in the beach of ME/CFS patients. I don’t condone it. I just wrote a blog against it. But the press on this has been over the top. If you write on this again, you might get more historical context.

    I would like to know if these threats were real and taken seriously, how many have been investigated and charges filed? I am not saying threats, possibly even death threats, did not occur. But I challenge the tone of Wessely running scared of ME/CFS patients to practice in the safer Afghanistan and Iraq. Give me a break. A little bit dramatic, don’t you think? And if he left his CFS work years ago because of this, why are we just now hearing of this? Why now? Curious to say the least.

  13. bella

    I would be very grateful if you would read the following. It provides an important and enlightening context for all this, and may make you interpret what is going on in a new way:

    http://www.publications.parliament.uk/pa/ld200304/ldhansrd/vo040122/text/40122-12.htm

    Also the rapid responses to the article in the BMJ.

    Thank you.

  14. David B. Benson

    Only in Britian?

  15. CBS

    “Chronic Fatigue Syndrome: Death threats for scientists?”

    Really? I expected this from the British press but not from you , Mr. Zimmer.

    How about:

    “Chronic Fatigue Syndrome: Death Sentence for Patients?”

    Please, condemn (and prosecute) the threats, not the patients.

  16. Chris

    Carl,

    If you’re not putting your efforts towards finding causes for the suffering of ME/CFS patients, please just stay off the subject. What you’re doing advances nothing.

  17. April Brown

    There’s an interesting point that Steven Johnson brought up in his book about John Snow’s breakthrough in understanding the mechanism through which cholera spreads (The Ghost Map), that most scientific breachthroughs weren’t so much stumbling upon brilliant ideas, but realizing that accepted theories were flawed. And that this is a really difficult step for an established school of thought.

    The controversies about vaccines and viruses kind of reminds me of this. I’d think this post through more and say more interesting things, by my toddler is insisting that I put the laptop away.

  18. Marco

    Let’s send Wessely to Iraq or Afghanistan and have him work over there, after all it is supposedly safer than the UK – this should be an easy compromise everyone would be happy with ;)

  19. Matt

    Referring to viruses as living is debatable. Or has this question been answered collectively by assembly — like the planetary status of Pluto?

  20. Honora Murphy

    This is how unsubstantiated misinformation “goes viral”. You have become an unwitting carrier. As you know, this has a real affect on the behaviour and attitudes of your readers. You really should have predicted this effect.

  21. MECFSPt

    Most of the time I have been sick with ME/CFS, I have been too ill to speak on the phone, lob a threat, appear in public, or go out to buy a butter knife. The idea that patients like me could be organized in the way you describe is pretty ludicrous.

    The “death threats” idea is a tactic started by Elaine Showalter as a way of getting attention for her loony crew of faux-researchers (Simon Wesseley, who is loudly making the latest “death threats” accusations is one of her cronies). I’m not sure why this isn’t obvious, but they do this narcissistic exercise because a) they appear to be so personality disordered they basically exemplify everything they try to project onto suffering people (projection is a common complication of some DSM personality disorders), and b) they get a lot of attention for acting persecuted (note your article and all of the other articles about this supposed controversy). Self-aggrandizement — i.e., the belief system that one is being persecuted by death threats, etc. — is also a quality of the aforementioned mental illnesses. I do pray that Wesseley and Showalter get to a good psychiatrist (I said a good one: that is, Wesseley should not employ himself or anyone he works with), but sadly, those with personality disorders are rarely diagnosed and often attain prestigious positions in society.

    Have you ever seen a mob of ME/CFS patients? Most of us are bedbound and too cognitively impaired to keep a good list of our medications. It is a joke in the ME/CFS community that we can’t organize protests like any other group because we’re too ill (comparing us to animal rights activists? Come on — they can climb fences and run like hell: have you ever seen us try to just get across a room?). The type of militant organizations you mentioned also have the luxury of being well enough to survive a night (or a few nights) in prison: most ME/CFS patients would sustain such a negative health impact from that they may not recover for months — or ever. It would not be worth the risk for us to go all Earth First on a lit. theorist or psychiatrist pretending to be researchers (who loves good stories full of intrigue more than a lit. theorist and psychiatrist, I ask you? — Showalter and Wesseley love the yarn about the loony patient with a knife: but where exactly is the alleged knife or the incident report?).

    I hope you’ll follow up with a more hard-hitting piece that actually examines the small, core group that keeps coming up with these preposterous claims (namely at this point: Simon Wesseley) and come to understand how this lunatic fringe has worked on a quiet campaign for years to put out false research (including negative XMRV research, for the record, that did not replicate the original study methods that found XMRV in ME/CFS patients) and deny the suffering of people with ME/CFS. You seem to comprehend that this illness causes great suffering, so why not focus on that instead of sensationalism? In the pictures I have seen recently of Wesseley, he is sprawled in a comfortable office looking quite smug and not the least bit scared. In the pictures I have seen of ME/CFS patients, they look ragged, bleary-eyes, desperately ill, and they’re generally trapped in bed. They’re not at home writing manifestos: they are trying to figure out how they’ll pay their rent, and they are trying to rest up so they can get out to buy groceries.

    I think I speak for most patients when I say that we don’t want to jump into virus-fanaticism just to have an easy explanation for our suffering: what we want are viable treatments, and our interest in XMRV comes largely from some examples of antiretroviral treatments helping patients who have tried them. Many of us have been sick for decades and have missed out on just about everything that makes life worth it — we want to try a treatment that might work, even at great personal risk. We are like patients with any other illness waiting for science to match the urgency we feel about our own lives going down the drain. In this way, we were much like those with incurable cancers or people living in the early years of AIDS. Isn’t this how science really solidifies, that is, by patients expressing willingness to take risks in the name of science? We’re only asking the press not to shut the door on us, and for scientific curiosity to include more than a cursory and often caricature-istic look at our lives.

  22. Anne

    @ couternix Are we talking relative or absolute risk here? There are an estimated 17 million patients with ME/CFS worldwide, how many unique individuals did you hear from at PLoS and was every single comment and letter a death threat? How many were carried out and what was the likelyhood that they could or would be carried out? Were the death threats organized?

    I’m sure you are not implying that being organized somehow nullifies legitimate questions and discourse or means that all organized patients make death threats. Most patients in my experience repeat what professional researchers themselves say. They may misstate some of the facts (most are not scientists), but that isn’t illegal – politicians do it all the time. As well, the scientific literature and many definitions specifically note cognitive abnormalities, but as the ultimate stakeholder don’t they have the right to be informed and try to disseminate information?

    It’s no different than articles on divisive politics – if comments violate the published standards of the site hit delete or the circular file for letters. Yawn.

    Carl – It is interesting that it was Dr. Wessely who first began repeatedly comparing ME/CFS patients to animal rights activists (instead of AIDS activists which seems more comparable). I wonder what the psychological theory is wherein if someone states something often enough other parties such as the police adopt it as their own? Hmmm.

    Perhaps the headline for the blog psot should have been “Death threats go viral” given the speed with which this story has sped worldwide.

  23. RS

    Earlier reports describing ME contain clear reference to the unmistakable neurological features, whereas early reports of CFS do not, focusing instead on symptoms commonly found in glandular fever.

    Case Definitions vary remarkably, and there is appalling confusion over terminology and about selection and definition of patients studied. In 1991 a group of UK doctors (mostly psychiatrists) produced a new case definition which specifically excluded all neurological signs but which specifically included all cases of medically unexplained fatigue which had been present for six months. This was a retrograde step, as it broadened the official case definition to include many psychiatric conditions, particularly those in which tiredness and sleep disturbance predominate. These psychiatrists (led by Professor Simon Wesley of Kings College Hospital, London and known as the Wesley School”) claim that ME does not exist, and that it is entirely synonymous with CFS and that CFS is a functional somatic (i.e. psychiatric) syndrome. Wesley is an adviser on CFS / ME to the UK Government. Fatigue syndromes are formally classified in the ICY as psychiatric conditions. In the United States, case studies and patient selection criteria are much more rigorous than in the UK, with the result that papers on CFS are describing cases of ME.

    http://www.meactionuk.org.uk/DETAILS_OF_MEDICAL_REFERENCE_PAPERS.htm

  24. Oh sure, make me a mother of a two children that watched her children react again and again to a DPT shot the bad guy.
    BMJ is hardly the victim here, they are the villian,, so cry me a river.
    Dr. Wakefield discovered a new type of inflammation in the guts of our kids and he lost his liscense and his reputation smeared.
    Now it is common knowledge – embraced by many in the medical field that yes, indeeeddddy there is inflamation in the gut of the kids that have autism, and reacted to a vaccine.

  25. Ben

    I’m not sure what article the commenters here are commenting on. As far as I can tell it’s not the one at the top of the page.

    There appear to be people having a go at Carl for not presenting sufficient evidence of death threats – it’s a blog post about how one person got death threats, he’s heard stories of others and is speculating about the seriousness of it.

    There appear to be people having a go at Carl for condemning all patients. I can’t see where in the post he does that. There’s a post written about about community of people who will hang onto their ideas despite the complete lack of evidence. That community may contain a subset of the patients but it is in no way condemning all patients.

    There appear to be comments condemning a group of doctors/researchers for telling people it’s all in their head. Fair enough. Doesn’t mean that there isn’t a bunch of people who will continue to believe in various theories long after they’ve been shown not to be true.

    As I say, completely different post you lot appear to be reading.

  26. David B. Benson

    Matt — Do you prefer stating viruses are zombies?

  27. While some people with chronic fatigue syndrome come off militant, it’s a reaction to their being told for decades that they’re crazy instead of sick. Meanwhile, a handful of dedicated doctors continuously uncover evidence of an abnormal immune system that points to some kind of on-going infection, only to be ignored and often maligned by the portion of the medical community that has decided, against the evidence, that CFS is psychological.

    By nature of their illness, people with CFS are unlikely to take much hostile action — the energy it takes just to become angry can put many of them in bed for days or weeks.

    Also, I want to point out an inaccuracy in this post — you refer to the illness as “chronic fatigue,” when it needs to be called “chronic fatigue syndrome.” Chronic fatigue is a symptom of nearly every known disease, as well all malnutrition, stress and sleep deprivation. Chronic fatigue SYNDROME, on the other hand, is a specifically defined illness with several dozen symptoms.

  28. ME/CFS mom

    One has to look at the injustice done to ME/CFS patients, including sick children, so one can understand who are the real victim’s.

    This is how real ME/CFS sufferers look like http://vimeo.com/24683179

    “A judge orders a 12-year old girl with Chronic Fatigue Syndrome /Myalgic Encephalomyelitis (CFS/ME) and Multiple Chemical Sensitivities (MCS) to be locked up in a psyquiatric ward of a hospital and forbids her mother to see her” 12. August 2011

    “by Jolene Cargill, Newsnet Scotland’s Social Affairs Editor.
    Watching a child suffer every day at the hands of a chronic, disabling illness is heartbreaking for any parent. Imagine then, what it’s like to be blamed for your child’s illness and threatened with social services.
    This is the reality for many families caring for a child suffering from myalgic encephalomyelitis, known as ME or chronic fatigue syndrome. In fact, the number of parents in the UK being threatened by doctors who say they will report families to child protection agencies has doubled in the last year.

    The Association of Young People with ME (AYME), the UK’s leading charity supporting young people with ME, claim hundreds of families already scarred by the illness live in fear that their child will be removed from their care.

    Chief Executive Mary-Jane Willows said they have seen a dramatic rise in calls from parents this year. “Most families feel under threat at some point and that is hugely significant. Just one threat is one too many. Hauling families through child protection proceedings on the basis of unfounded threat just adds to fear and anxiety for these families.”

    Health institutions and governments around the globe still fail to acknowledge and validate ME/CFS as a serious acquired neuro-immune disease, invest in research and find a cure!

    The consequences are severe

    Around the globe, millions of people (including children) live with severe pain, muscle weakness, bone-crushing physical exhaustion, post-exercise malaise, sleep disturbances, cognitive dysfunction, mental fatigue, severe headaches, just to name a few of the symptoms. Many are home or bedbound for years.

    Many patients develop life-threatening complications after being sick for decades and 6% develop Mantel Cell Leukemia. Sufferers have life expectancies thirty years lower than average.

    Many patients live in poverty, because they can no longer work; they lose their careers, their businesses, their savings, and their homes. Most are denied disability benefits, by governments that have falsely claimed that ME/CFS is a “psychosomatic disorder”.

    Doctors are not trained, or are misinformed about the seriousness of this acquired neuro-immune disease and refuse to investigate their symptoms, or even provide basic, supportive medical care. In some countries, ME/CFS patients are “sectioned” to psychiatric institutions, and are denied the appropriate medical treatment they so desperately need.

    Children suffering from ME/CFS lose years of education and normal social interaction with peers. Most school systems refuse to accept or accommodate the child’s medical limitations, so worsening the child’s condition.

    Child welfare officers sometimes remove children who are sick with ME/CFS from loving
    and caring homes. Parents are unjustly accused of child abuse, and children are institutionalized or put in foster homes.

    As a result of the flawed case definition as well as an inappropriate, trivializing name, patients face discrimination in health care, and alienation and isolation from family, friends and society.

    Due to this magnitude of difficulties, suicide rates in ME/CFS patients are very high.

    “Dr. Alter, a prestigious scientist who discovered the Hepatitis C virus and co-author of this study, stated: “I’m absolutely convinced that when you define this disease by proper criteria, this is a very serious and significant medical disease, and not a psychological disease. It has the characteristics of a viral disease. It usually starts with a viral-like illness. If XMRV is not the causative agent — and it may well not be — there is still need by other groups to look for the agent which may be the cause.”

  29. Nonchalant

    It’s just the same old Simon the British patients have suffered from for so long.
    “Tactics used by psychiatrists of the “Wessely School”
    5. Wessely patronises, denigrates and mocks patients with ME/CFS, thereby damaging them and their credibility in the eyes of others.”
    from- Denigration by Design?
    http://tinyurl.com/3qucfcr
    This really is a very cleverly done propaganda campaign. Practice makes perfect. I suppose this would have been published earlier if not for the widespread riots. It’s now been ramped up to include “violence”. Very clever. Even the way the article starts is exceptionally well done –
    Chronic fatigue syndrome researchers face death threats from militants
    Scientists are subjected to a campaign of abuse and violence
    [insert exceptionally innocent picture of "the victim"]
    Professor Simon Wessely has felt safer in Iraq than in Britain.
    Provocative words and phrases used by the journalist include:
    violence, death threats, militants, abuse, dangerous, knife, punched, attack, bombarded, hate, shot, furious attacks, stalked; extremists is repeatedly used for effect.
    I feel sorry for the patients over there.

  30. Jack

    ‘The scientists he talks to have some pretty startling things to say. A protestor shows up at a talk by a scientist, armed with a knife. A scientist backs out of a collaboration for fear of being shot.

    I should say I take this article with a grain of salt. McKie writes that “according to the police, the militants are now considered to be as dangerous and uncompromising as animal rights extremists.”

    But the catalog of harassment he presents made up mainly of obnoxious emails. No one’s bombed a lab. And even if there are some people who are sending XMRV-related death threats, they could well just be a handful of people, rather than any sort of broad movement.

    In other words, I really hope that my prediction turns out to be wrong.’

    Couldn’t agree more.

    I too have read these comments above and can’t help but think they are passing remarks about something you haven’t said.

    Unless of course those feeling outraged and expressing it so forcefully, are actually involved in what is receiving condemnation?

    Legitimate, peaceful protest and accurate argument is welcomed. Personal harassment and threats are not. It doesn’t do any ’cause’ any good whatsoever.

  31. I’ve been seriously ill for 15 years with ME. I’ve been housebound, more than often completely bedbound for 8 years now, requiring a full time carer. I have symptoms ranging from severe pain, to paralysis, cognitive problems, and several cardiac issues. I have no psychiatric disorder – in fact have rarely even been clinically depressed in all the 15 yrs of illness! I’m sicker and more disabled than my 60yr old mother who has multiple myeloma. I live in the UK, and due to ignorance and misunderstanding among the medical establishment here about the illness, and how to treat it, I’ve received very little support medically in all that time, and have certainly come across a whole lot of prejudice. It very clearly amounts to genuine neglect in some instances. I can’t tell you how frustrated that has made me over the years.

    Whilst I absolutely cannot and do not condone any kind of threats against scientists working in the field, (And it actually makes me pretty angry that some individuals have been taking such action – because I feel it’s put our cause back many years!) I find it extremely unfair that all ME patients are being tarnished with this brush. (As another commenter here said, those responsible are barely a teaspoon of sand on the beach of ME patients!) Statistically, it is a very tiny percentage of patients committing these acts – and to be fair, there are a lot of reasons why such a situation has occurred, most of them not even vaguely the fault of the patients. It also seems that the magnitude of these threats has been blown out of all proportion. There are two primary reasons, in my mind, why that is a problem. The first is that, as I said, all ME / CFS patients are being tarnished with this brush, seen as the type of people who are so psychologically unstable that we would threaten the very people ‘trying to help them’. Secondly, and perhaps even more importantly, this could potentially push the GOOD doctors and researchers away from the field – and there are way too few already! More than anything right now, we need good biomedical research into this neurological illness, not more psychological research into all the many conditions contained under the CFS umbrella.

    Personally, I have withheld judgement as to whether I think XMRV could be the cause of my illness. My concern now is the chance that this research could be completely shut down before anything has really been proved either way. What I want to see are more studies which properly replicate the conditions of the first study – THAT would put this issue properly to bed, (For the majority of people anyway) whether the results be positive or negative. I have to say that it makes very little medical or scientific sense to keep putting money into studies which are different from the original and therefore can never prove either way whether that study was correct.

    I have a large network of other patients when I’m able to be online, and I can assure you, I’ve never once heard anyone say anything that would amount to genuine abuse against any researchers or doctors working in the ME field – just lots of frustration, upset, and downright hurt. I rarely bother to comment on these kinds of articles, but I managed to get online for more than 2 mins, for the first time in weeks tonight, and this article appeared on my Twitter feed. I guess I had just had enough of hearing about how hard this handful of researchers have it, when I’ve been suffering through hell and back for 15 years now. I wish people writing articles like this would look into the issues BEHIND the media-grabbing sensationalism, rather than simply buying into it!

  32. Valentijn

    It is unfortunate that people fixate on a viral cause. A cure would be more useful! Glutathione depletion theories explain pretty much all of our symptoms, and isn’t too hard to treat … too bad it involves over the counter supplements instead of brand-name drugs that come with lobbyists. And the unfortunate reality is that many M.E. patients, especially in the U.K., must attempt to act as their own researchers and doctors when they’re too sick to even watch TV.

    We detest Wessely, not because we fear the stigma of psychiatric disease, but because we know that the label is completely inappropriate for M.E. We detest him because he has significant influence over treatment of M.E. (thankfully only in the backwards U.K. thus far), and denies patients proper medical care by somatizing a very physical illness. His group goes so far as to advocate that real doctors not investigate physical causes (ie order lab tests), for fear it will reinforce our “false” belief that we have a physical illness.

    M.E. isn’t a problem with how we think. It isn’t a problem with how we behave. And it isn’t a result of deconditioning after an illness. My doctor (a naturopath) ordered neurotransmitter labs for me recently, and they showed extremely high excitatory levels – the same ones likely to be high if there is glutathione depletion. Treating them has made me no longer housebound or unable to think clearly. I was immediately able to walk up a flight of stairs at a normal speed again without being completely exhausted for an hour afterward.

    Too bad U.K. patients are actively denied the luxury of a cheap urine test that my doctor thought was the first sensible thing to test for when I told him of my symptoms, even though he knew nothing about M.E.

  33. Sam

    “Update #2: With a fast-growing comment thread, I just want to remind everyone that, while I do not take responsibility for the content of the comments, I do moderate them according to my “light but firm” comment policy. A spirited debate is fine with me; it’s fine for patients to complain about how they’re treated by the medical community. But if (like one of today’s commenters) you declare that a scientist has committed “a human rights crime” against patients, don’t wait up tonight to see your comment come out of moderation. It won’t. You’re free to write the stuff on your own blog; I’m free to decide not to include it here.”

    Please don’t take this as flippant, it is a genuine question

    If what you mention does occur and to a large group of people, what do you suggest they do?

  34. Zac

    I don’t blame anyone for fighting for their freedom.

    Look at Libya and Egypt. The ME/CFSers have been suppressed for decades. It’s time to push for solutions.

  35. Sadly it looks as if we cannot all even agree to condemn the intimidation.

    I don’t know where we go from here, but the chilling effects can only be to the detriment of research in this field. I think that’s one important consideration that many rightly impassioned and enthusiastic commentators here are missing.

    We surely don’t want to see good researchers driven out of the field. We should all unite in condemning such conduct.

  36. Owen

    Coturnix, from reading your blog in the past (with particular reference to herpetology in China) I know you to be honest and humane yourself. But I don’t think you understand much about ME/CFS patients and sympathisers. They are angry and frustrated and these days many of the more articulate do tend to communicate with one another via blogs and e-groups. But they are hardly “organised” in the way that Simon Wessely and his cohort of co-authors make out or are themselves (use the quick rule of thumb of common sense, for heaven’s sake).

    Given your own background I would have thought you would have been a bit more careful in looking below the surface of this anger. I’m sure you must be familiar from your own experience with the level of anger and frustration voiced over the internet by Bosnians and others (including Serb/ian dissidents) who have been forced to endure the Serb/ian nationalist version of the history of the 1991-1999 Yugoslav wars. Now try to transpose your understanding of that situation to the frustration felt by those who have endured the “propaganda wars” of ME/CFS.

    Anyone interested enough to delve very slightly below the surface of the media continuation of these two sets of “wars” will very soon encounter the nexus between Sense About Science and its scientific allies and LM/Living Marxism and its Balkan allies. The Spiked/Institute of Ideas hub brings together a wide range of “libertarian” lobbies and their corporate associates. Have you ever tried following the links that take you from Fiona Fox to Thomas Deichmann?

    What I find rather rich about “objective scientists” is the way they narrow down their perspectives to avoid remarking what are to the non-scientist very obvious political connections between the scientific rationalism lobby and its incongruous allies in for example the climate change denial movement. It’s the scientific community’s “cognitive dissonance” that tends to inspire anger of the sort that Wessely and his associates are only to happy to provoke and exploit.

    Wessely’s current media campaign – which, be clear, is what it is – is stimulating yet another display of very clever people showing they can be as prejudiced and complacent as the next person the moment they poke their head out of their own laboratory.

  37. RS

    A patient withME/CFS must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, circulatory, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria.

    ME/CFS in England has been renamed and redefined to put people with a physical illness together with those with a psychiatric condition. When they lump all “fatigue conditions” under one umbrella, it’s like putting chronic headache, migraine and brain tumors under one heading such as “Chronic Headache Syndrome”. Who can blame the ME/CFS sufferers for their anger?

  38. Nonchalant

    Hawkes quotes Dr. Shepherd “But what discourages people on the biomedical side is this atmosphere in laboratories that you shouldn’t be involved with this at all if you want to advance your career, that it’s all a psychiatric condition and there’s no point in searching for a physical cause when we’ve had so many negative results.”

    Biomedical researchers have been saying that is the situation in ME/CFS for over 20 years. They have also been saying that there is almost no money available for biomedical research. And the prejudice and abuse of patients continues.

    “The treatment of today’s ME/CFS-patients is comparable to that of lobotomy patients decades ago” “When the full history of ME/CFS is written one day, we will all be ashamed of ourselves”
    Prof. Dr. Ola Didrik Saugstad, Professor of Pediatrics, WHO Advisor, Norway

    “Hopefully, one day, my dream is that our medical community will produce a formal apology to the patients for not having believed them all these years that they were facing a real illness.” Jose Montoya, M.D. Stanford University

    “I’ve had patients who met post-traumatic stress disorder criteria… where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD.” Professor Nancy Klimas, M. D., Miami

    BTW, Mr. Zimmer, I don’t think you meant to change “carrying” to “armed”, did you?

  39. Nonchalant: I don’t think you meant to change “carrying” to “armed”, did you?

    I don’t know what Carl Zimmer thinks, but to me a person carrying a knife is armed. It is actually against the law to carry a knife in the UK.

    Let’s not minimise the offence. Carrying dangerous weapons to a public talk is absolutely not acceptable.

  40. Honora Murphy

    TonySidaway: To make clear, I have never attended any meeting or event regarding ME and I don’t now live in the UK.

    I use a little swiss army knife as a key fob; it has a little penknife, a scissors, a cork screw, a tweezers and a little watch. I have never considered myself “armed” although, technically, I carry a knife. Given the scant details we have of this incident, it is entirely possible it was similarly innocent. These unsubstantiated accusations, always extremely vague, are little more than rumours.

    Finally, in the article(s) under discussion here, Prof. Wessely say’s he now feels safer in Afghanistan and Iraq than he does working on ME. I can’t imagine that the soldiers who serve, and have served, in these war zones appreciate Prof. Wessely’s comments which are disrespectful in the extreme. I’m sure he thought he was being amusing but there is nothing amusing about the sacrifice and suffering endured by these brave citizens and their families.

    I do not condone violence, or threats of violence, under any circumstances but I find this entire situation, and Prof. Wessely’s behaviour, baffling and bizarre.

  41. RS

    Professor Wessely and other members of the “Wessely School” simply ignore all this scientific evidence that proves them wrong and they remain committed to their own unshakable beliefs, which many people believe have resulted in unnecessary suffering of innumerable sick people.

    That ME/CFS is not a somatisation disorder is now beyond doubt because there is overwhelming evidence confirming it to be a multi-system organic disorder in which there is disruption of virtually every system in the body (for evidence, see http://www.meresearch.org.uk/information/researchdbase/index.html and http://www.meactionuk.org.uk — between them, these sites contain over 3,000 published papers demonstrating that ME/CFS is not a psychiatric disorder).

    http://www.investinme.org/Article-130%20Williams%20Hooper%20Wesselys%20Ways.htm

  42. Owen

    Honora Murphy, Simon Wessely has been the pre-eminent figure in this field for years and appears to have been a major influence in determining priorities in research funding. A relaxed flippancy – I’m sure he would dispute the word “insensitivity” – has been his stock in trade and his deliberate courting of controversy seems to have garnered him considerable support among fellow researchers. So perhaps you can now glimpse part of the reason why he arouses such strong reactions and why his pronouncements don’t go unchallenged.

  43. Thank you for at least questioning the current media blitz by Dr. Simon Wessely and his one-time co-author Myra McClure. I find the articles confusing, myself, because it seems to me that if you have been threatened with a knife, you should go to the police. Why have they not gone to the police?

    The disease Myalgic Encephalitis received its name in the mid-1950s after a series of outbreaks around the UK. Worsening of symptoms after exertion and cognitive dysfunction are the hallmark symptoms. The disease was first called atypical polio, and some British researchers found evidence of a link to Coxackie B (an enterovirus; the polio family of viruses). In 1969 WHO classified M.E. under neurology, and it has remained so designated ever since (G93.3 in ICD-10). But a small clique of British psychiatrists insist it is psychosomatic.

    In the early 1970s, two British psychiatrists published two articles in the BMJ, both suggesting M.E. was actually mass hysteria, mainly on the evidence that some outbreaks took place in residential dormitories and the victims were female. Why BMJ would publish such gender-biased trash is beyond me, but it should give you a hint of the psychiatric approach to the disease.

    In the mid-1980s there were hundreds of cluster outbreaks of the disease in the U.S. The CDC and NIAID (part of NIH) held a meeting and decided to focus on just one symptom, fatigue. They created the new name “chronic fatigue syndrome” – they could not have come up with a more dismissive name had they used a focus group.

    A small, close-knit group of British psychiatrists Led by Simon Wessely (plus the late virologist Stephen Straus of NIAID) eagerly adopted CFS (coined in 1986 by Straus). This time they paired it with “neurasthenia,” hysteria’s partner, referencing “American Nervousness,” a book written in 1869 that claimed allowing girls to study science risked either hysteria (defined there as the “shrunken womb”) or neurasthenia (the vapors, a nervous condition, a nervous breakdown). The gender-bias remained, but better disguised because neurasthenia had disappeared from common use.

    Who would possibly benefit from changing M.E., a neurologic disease, to CFS, a psychosomatic disease? Aside from that small group of psychiatrists (who have made a lot of money), it has relieved insurance companies and penurious government bureaucrats from having to recognize the needs of an increasingly large community of severely ill patients. It is a script right out of a Michael Creighton novel.

    If you want the truth, let me suggest you visit the website of the group, M.E. 25 percenters. Just look at the picture on the home page. Even the psychiatrists don’t claim to be able to fix these patients – so where is the research? Why aren’t you writing about desperately ill young people instead of some inappropriate emails from a few kooks who are part of a very large population of sick people (if these authors even have the disease, which is a question that also could be asked).

    I know people who fell prey to this disease as teenagers, who are in their 40s now. They have never gone to college, never had a career, never gotten married, never had children. The 23-year-old son of a close friend had a diagnosis of “CFS” for 12 years, during which time doctors mocked his symptoms. He died in his sleep from myocarditis. Young Sophia Mirza, who was sectioned for “refusing to swallow,” died of dehydration. The inquest found significant damage to the basal root ganglia consistent with … An inability to swallow.

    There is no space to give you more examples, so again let me suggest this website:
    http://www.25megroup.org/home.html

    And, for the record, viruses have been considered a probable cause of this condition since it was first recognized. In addition to Coxsackie B, patients have been found to have HHV-6A, EBV, CMV, HHV-7, and even parvovirus. There is evidence of considerable immune, cardiac, endocrine, and/or gastrointestinal abnormalities; abnormal SPECT scans and fMRIs; VO2 MAX scores so low that normal light exercise is actually dangerous. XMRV (or the gamma retroviruses as a class) has been thrown in the mix, but is by no means the only virus in the published peer-reviewed literature on the disease. Most researchers believe there is a combination of factors. There is also significant evidence of cluster outbreaks, suggesting the disease is contagious at some point in its progress.

    Every time Simon Wessely intimates that he is disliked because patients are afraid of a psychiatric diagnosis (rather than because for years he has covered up thousands of professional articles on biomedical abnormalities, while the treatment that has made him wealthy, cognitive behavior therapy plus exercise, has cured no one), he bears some responsibility for the decades-long suffering of these invisible patients, and the deaths of others from neglect.

    Perhaps some day a British newspaper will find THAT a story worth reporting.

  44. Irene Thorpe

    your comment that XMRV proponents are now issuing death threats to scientists who have done this research is not accurate. Most of the so called threats to Wessely and Sharpe happened long before XMRV was ever mentioned.The anger in the UK is because no funding has gone into biomedical Research

  45. Irene Thorpe

    ME goes back 60 years and CFS only 25 years The term CFS/.ME is not recognised by the World health organisation and the 3 phrases are not interchangeable

    There has been a legitimate academic debate about which model – biomedical or biopsychosocial – best fits the illness ME and the majority of researchers who treat and publish peer reviewed papers on this illness show that the biomedical model
    predominates in academic circles across the world. Only a small( but it appears a powerful) minority of psychiatrist really believe the view of the ‘Wessely school of thought’. There are many psychiatrists and physiologist’s I could point you to who would completely debunk this outdated and false illness believe that they have of what ME really is.

    Those who wish to do research into the physical causes have not been able to secure funding because of the bias on the MRC panel and more than 90% of official grant-spend on ME/CFS in the past decade has gone on research intocognitive-behavioural approaches to help patients manage their symptoms and cope better.

    These are only palliative interventions and even the advocates of these approaches recognize that they benefit only a small minority of patients over and above standard medical care, and are not the answer to the biomedical enigma at the heart of ME or CFS or even chronic fatigue.(other)

    The MRC set up an expert group to look at ME and CFS research after they were lobbied in a constructive manor, which had nothing to do with stigmatising psychiatric illness. It was found people with ME and CFS did have a genuine grievance and the MRC set up an expert group on CFS/ME to look specifically at biomedical research priorities. If you had asked a current member of this expert group you would have realise the MRC are now trying to put this matter right and have produced a list of research priorities, have ring fenced £1.5 million for biomedical research and are right this minute assessing those research application.

    Three charities – Action for M.E., the ME Association and ME Research UK – and a private donor have joined forces to fund the UK’s first biobank of human blood samples for research into the causes of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./CFS).
    The biobank will be situated at London’s Royal Free Hospital where it will be able to link in with the extensive research facilities at University College London.
    From Monday 8 August, having completed their feasibility studies, principal researchers Dr Eliana Lacerda and Dr Luis Nacul, London School of Hygiene and Tropical Medicine, will be inviting patients from a dedicated disease register to submit blood specimens. The blood will then be specially prepared and stored for use in future biomedical studies.
    Professor Stephen Holgate, Chair, MRC Population and Systems Medicine Board, says:
    “This initiative has my full support. The biobank project is an excellent example of how the M.E./CFS charities are working together within the national framework, established by the Medical Research Council expert group, for taking forward the UK’s research effort into this poorly understood chronic condition.”
    Invest in ME has plans to set up a UK centre of excellence for transitional biomedical ME research and Let’s do it for ME! is a patient-driven campaign to raise awareness and vital funds for this project which will provide clinical assessment, diagnosis and treatment for patients, training and information for healthcare staff, based at the Norwich Research Park in the UK and aiming to work collaboratively with international biomedical researchers.
    This means all our UK main charities are behind biomedical science research
    Meanwhile world wide we have Just had the new Myalgic encephalomyelitis: International Consensus Criteria published – Source: Journal of International Medicine, July 20, 2011 and this note-The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process.In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).

    People with ME, CFS and chronic fatigue deserve better understanding than what these article portrays

    Mrs I Thorpe ME survivor for 23 years

  46. Tony Sidaway

    Honora, I’m sure you wouldn’t hurt a fly, but please leave your key fob at home if you attend public meetings in Britain.

  47. Tony Sidaway

    I’m still seeing comments here seeking to condone or excuse attacks on scientists. This isn’t right.

    I only ask that we agree to condemn intimidation of researchers. Why is this proving such a difficult request? Even attending meetings armed with knives has been minimized and defended. That ought to be absolutely unacceptable.

  48. Angela Kennedy

    @ Tony Sidaway.

    I’m sure any reasonable person condemns violence or threats of violence, or intimidation against scientists. I certainly do. Let me make that perfectly clear. But, as you can see, if you’ve read the other comments, there are major problems with the claims of ‘attacks’ that have been doing the rounds in the media these past few weeks. I haven’t seen you acknowledge that, and would request perhaps you would do so?

  49. This is going to do to the CFS field what anti-vaccine and anti-mercury activists did to the autism field, set it back at least a decade, prevent new researchers from entering it and shut down funding.

    What CFS patients need most is more good science. That means good researchers being funded to do good research, not intimidation reminiscent of Stalinist Genetics research.

    It is faux controversies like this that make it difficult to get funding, which is why I can’t get funding to investigate the nitric oxide connection to CFS.

  50. Jack

    This story about ME militants is a joke. Most ME pateints have a hard time making it around there home and doing self care for themselves.
    And the report of a patient carrying a knife? It could have been a swiss army pocket knife or a plastic knife? Seriously.
    17 million people suffer worldwide from ME. They are bedridden , Housebound, dying slow deaths.
    Perhaps a few of these 17 million send an angry e-mail to someone that tells the world there suffering is all in there head. That is probably likely.
    But with no hope because a biomedical condition that disables millions goes almost completly unfunded due to a few psychologizers in the UK and at the CDC I’m surprised patients are not angrier to be honest. I beleive they are just to sick to advocate for better treatment in most cases. The neglect from the medical and research community makes me so sad.
    In remembrance:http://www.ncf-net.org/memorial.htm

  51. I’m so happy to see yet another article blaming patients. It’s a fresh and original viewpoint that we haven’t seen at all in the news 30,000 times lately. Reminds me of how the L.A. Times covers medical marijuana by profiling stoners, not patients.

    Guess what — we’re not all “militants,” many of us are desperately embarrassed by the (alleged) acts of a VERY few, and you might do well by talking to and reporting on the articulate patients who can shed light on this instead of being thrown under the wagon along with everyone else.

    P.S. daedalus2u, kindly don’t be disingenuous. You haven’t been able to get funding for LONG before this. Don’t blame people’s reluctance to give money to an engineer with no medical training whatsoever on the way a few patients are reacting. That doesn’t help us sick people at all.

  52. Such an interesting article and such an interesting response! I think what it shows is the desperation people with these conditions (ME CFS MCS etc) feel. Being one of them I know how devastating the illness is.

    I think that the passion displayed is in direct proportion to the desperation that people feel.

    This shouldn’t be surprising in itself and, perhaps the message that should be taken from it is, that approaches to dealing with this category of illness need URGENT attention. We need more good quality research, and governing bodies need to acknowledge the seriousness of this growing issue.

  53. David B. Benson

    Is this syndrome only recognized in Britian?

    Called something else in the USA (or elsewhere)?

  54. Honora Murphy

    @TonySidaway: No worries, Tony, one does not travel with one’s Swiss Army knife any longer.

    For the record, I, and others here, have condemned violence or threats thereof. For those who may not have done so explicitly, it’s clear that it’s axiomatic. Please let’s agree to agree.

    I find it ironic that these accusations, cultured in the media petri dish, have so successfully “gone viral”. This really is absurd.

  55. Andrew

    “Dr. Wakefield discovered a new type of inflammation in the guts of our kids and he lost his liscense and his reputation smeared.”

    The crook formerly known as “Doctor” was paid off to concoct bogus evidence. His reputation comes pre-smeared by his own actions. As the parent of an autistic child, I rejoice in the world-wide recognition of his crimes.

  56. This is not an XMRV issue. This is an issue of people who have been ill with a crippling disease for decades having been denied treatment due to the psychologization of this illness by these scientists.

    Patients are not reacting to the fact that these scientists could not find XMRV in their studies. Patients are reacting to the facts that these scientists used improper cohorts, improper assays, and improper methodology.

    Patients are not demanding that science go one way or the other. Patients are demanding that science be conducted and driven by science, not by politics, and that proper scientific method is followed.

    Patients are not demanding scientists or government officials to say things that are not true. Quite the opposite. Patients are demanding that their rights to view documents under FOI are respected, which they have not been.

    Simon Wessely has been responsible for much suffering in the UK, by creating an atmosphere where critically ill people are sectioned and consequently die, and where children are forcibly removed from their homes. After decades of his psychiatric applications to biological illness, patients are demanding appropriate science, medical care, and help.

    This has translated into a global issue due to the collaboration of the Wesseley school with the US NIH and CDC. THe real issue here is the psychologization of a devastating illness.

  57. Christine Standing

    Re: “No evidence whatsoever has been produced by any of these researchers who are accusing people suffering with Myalgic Encephalomyelitis (M.E.) of harrassing them. People who suffer from this disease are in constant pain and they are often disabled and homebound. It is difficult to imagine these healthy researchers really feeling threatened by patients who are often too sick to leave their homes.”

    It is beginning to look like the psychiatrist is suffering from an excess of hysteria. By seeing his own crimes in other people, can it be that he is exhibiting classic symptoms of projective identification – a belief system that is used in the service of assuaging his own guilt? I am thinking of the deaths of ME patients and the abuse of a psychiatric patient through near-drowning.

  58. bella

    It is hard to describe the utter despair of feeling so ill and not being able to get help from anywhere.

    Those acting hatefully are just individuals representing only themselves.
    ME is estimated to affect quarter of a million people in the UK.
    Any constituency of that size will have such people in them, but they don’t describe the constituency.

    Except in the blanket broadsheet coverage of ME recently.
    I believe such coverage is part of the continuous effort to position ME as a psychological illness rather than a physical one. This benefits the quoted researchers enormously.
    Such efforts have been going on for years, and that is the real scandal behind this media smokescreen.
    Because it leaves deeply ill people uncared for, and now slated. With no opportunity for redress.

    Thank you for listening.

  59. bella

    Excellent post by Mary Schweizer PhD, above.

  60. Poodle Stomper

    daedalus2u Says:
    “…It is faux controversies like this that make it difficult to get funding, which is why I can’t get funding to investigate the nitric oxide connection to CFS”

    No, it’s having crackpot “theories” with no credible scientific backing, no background in biology, no credible lad, no experience in clinical research, ect… that keeps you from getting funding. Here’s a pointer; when you claim your crap can treat or prevent everything from CFS to Autism Spectrum Disorders, the odds are you’re a quack or a snake oil salesman. If you want to obtain funding you first need to go back to school, get your graduate degree in biology (or relevant, related science), get experience doing clinical trials, get a lab and THEN apply for funding. Heck, our lab is a REAL lab doing genetics research into certain human diseases and we don’t always get the funding we request.

  61. Poodle Stomper

    “Lad” should have been “lab”. Clearly you can have a credible lad but a lab is more useful for research.

  62. RS

    Excellent comment Khaly Castle (comment #58) and so true!

  63. dmholland

    I read the article at the top of the page then read all the comment and had to go back and read the article again. I think many of the commenters are responding to a different article.

  64. ern

    Life is good, you’re felled by some virus, but don’t recover as expected, not even after seventeen years. When I first encountered the ideas of the unknown-to-me Simon Wessely in the mid-90′s, who appears as an author on “Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome” (PLoS One), I thought back then his ideas part of some fringe or alternative movement that no-one could possibly take seriously. I was wrong. Apparently, it’s “simple operant conditioning” (Wessely & Chalder BJGP 1990) which keeps you so unwell year on year that when you occasionally must venture out, you feel vulnerable because you’re still not remotely capable of defending yourself.

    Karl is right, “Combined, the two articles become more worrisome”.

  65. Sam

    @daedalus2u

    What faux controverse?

    You don’t mean that one with three positive papers and validated with more than 10 methods do you? Not the one that involves the NCI, Cleveland clinic, NIH, WPI and FDA. Not the one that has the solid seal of approval of one of a handful of people that have discovered one of the 3 know human retroviruses, Frank Ruscetti. Not the one that is backed by the research of the man who discovered Hepatitis C, Harvey Alter. Not the one where every negative papers have failed to replicate those proven methods, or use clinically validated assays, never mind optimised their PCR to humans. Not the one that has now got supporting evidence from the JHK virus, a polytropic xenotropic hybrid, first detected in ME/CFS in 1989.

    No sorry you must be talking about the Wessely School’s quack pseudoscience.

  66. RS

    Prof Wessely admits in the BMJ that there were no ME/CFS patients in his ME/CFS XMRV study. It is always nice to read a well-balanced article. It’s just a shame that the BMJ, since the days that Prof Wessely was their editor, have failed to publish such an article about ME/CFS.

    The article by Mr. Nigel Hawkes is no exception to this rule. A two-year-old can tell you that there are always two sides to the coin but unfortunately Mr. Hawkes has never heard of this principle.

    Read more: http://niceguidelines.blogspot.com/2011/07/prof-wessely-admits-in-bmj-that-there.html

  67. gwatkin

    A complaint to the General Medical Council about William Hamilton featured as an example of harassment in the BMJ article by Nigel Hawkes. The complainant, Emeritus Professor Malcolm Hooper, has responded.
    http://www.meactionuk.org.uk/HamiltonandHawkes.htm

  68. RS

    Prof Hooper and Margaret Williams: Science versus Psychiatry – again

    Fiona Godlee described the disagreement between the biomedical and psychosocial schools of thought about ME as “an unproductive standoff in which…all progress is being stifled by increasingly aggressive intimidation of researchers”.

    The “unproductive standoff” certainly existed and may be said to be the result of 25 years of inflexible arrogance by “overly powerful psychiatrists who hold key positions in medicine, research, media gatekeeping and government policy…suppressing the argument that ME may be biomedical rather than psychiatric”

    http://niceguidelines.blogspot.com/2011/07/prof-hooper-and-margaret-williams.html

  69. RS

    Re:History of prejudice

    Malcolm Hooper, Emeritus Professor of Medicinal Chemistry

    University of Sunderland

    Furthermore, in his letter to the BMJ Peter White complains that the criteria which define people with classic ME are too burdensome for doctors to use.

    When did the careful assessment of sick people stop being part of the practice of medicine, especially when the disorder in question is known to be a complex multi-system disorder?

    http://www.bmj.com/content/342/bmj.d3956/reply

  70. Josh

    > “While some people with chronic fatigue syndrome come off militant, it’s a reaction to their being told for decades that they’re crazy instead of sick. ”

    That’s an awesome excuse, but counter-productive. What XMRV gave the sufferers was false hope, and proponents have been utterly irresponsible by promoting XMRV after essentially every additional study contradicted the original. And to be clear, these studies weren’t contradicting the presence of CFS or any of the related maladies, but specifically falsifying the premise that XMRV is the root cause because the original study was deeply flawed. This wasn’t the *evil big pharma* but academic researchers who by and large are more interested in truth than profit (otherwise they would work for *evil big pharma* and make significantly more money).

    So for the myriad of posters here who apparently couldn’t be bothered to actually look into the issue any more than swollowing the utterly unethical promotion of XMRV (and if you want to see motive for sketchy behavior, just look at the particular ties of the PI of that study), let me explain what you are doing – you are pushing for treatments that do not address your issue. You are derailing research that actually is looking for what causes your issue. You are embracing and enriching essentially a charlatan that stands to make millions while providing you nothing, in the same way the poor parents of autistic children have enriched that fraud Andrew Wakefield despite his blattantly unethical and fraudelent research. Having watched the frustration of my wife spend years trying to get validation for her own condition, and then treatment, I can appreciate your frustration, but I do not understand why you would rather champion XMRV that has been shown to be clearly unlinked to your condition rather than championing research that actually helps you.

  71. RS

    Josh: SEE COMMENT #58: “This is not an XMRV issue. This is an issue of people who have been ill with a crippling disease for decades having been denied treatment due to the psychologization of this illness by these scientists.

    Patients are not reacting to the fact that these scientists could not find XMRV in their studies. Patients are reacting to the facts that these scientists used improper cohorts, improper assays, and improper methodology.”
    *********
    It is compulsory that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, circulatory, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria.

    http://www.cfids-cab.org/MESA/ccpc.html

  72. Angela you write: “But, as you can see, if you’ve read the other comments, there are major problems with the claims of ‘attacks’ that have been doing the rounds in the media these past few weeks.”

    You don’t have to go far to see confirmation of the BMJ piece. Search on Wessely and Mengele, or Wessely and swimming pool oe Wessely and psychotic. You can check the Lancet’s editorial of 17 May, to which the BMJ piece refers, where the editors do indeed refer to their impression that “the sheer anger and coordination of the response to this trial has been born not only from the frustration many feel about a disabling condition, but also from an active campaign to discredit the research.”

    Wessely himself states: “at present the police are looking into two cases in which specific threats have been made to my physical safety. ” I imagine he would know.

    Dr Shepherd of the ME Association, while defending the legitimate view that the emphasis of research on psychiatry is problematic, told the BMJ : “But the way a very tiny element goes about protesting about it is not acceptable. It’s not representative of the patients as a whole. It’s a very very tiny minority—50 to 100 people, maybe. What they do is not pleasant and totally unacceptable.”

    If you condemn the intimidation, condemn it as Shepherd does. Don’t get mealy mouthed and make excuses or minimise it.

  73. David B. Benson

    Nobody seems prepared to answer my questions in comment #55.

  74. @David Benson:

    No, this disease is not confined to Britain. Here is a brief history:

    http://www.cfsuntied.com/history.html

    This is a U.S. website, so it concentrates more on what happened – is happening – to the illness in the US, but there is some global history there.

  75. Tracey

    I don’t care if you believe XMRV causes ME/CFS or not. It’s a retrovirus that has been found in the majority of ME patients and it’s written itself into our DNA; it’s not Santa Clause. This is about science, not believing or disbelieving in the Easter Bunny. The truth is this retrovirus can account for the myriad of symptoms that occur in our illness and so far, nothing else can.

    I’m too sick to get out of bed for more than what it takes to use the bathroom and get something to eat most days and I need someone else to drive me to my doctor’s appointments. Using the phone completely wears me out for hours afterwards and I know many other patients who are just like me or are much worse. How we can possibly be seen as threatening is beyond me.

    How about leaving us alone to suffer in our misery instead of perpetuating misinformation about us to the public? I have to say, I find it particularly distressing that Discover magazine, which is one of my favorite magazines, would throw suffering ME patients like me under the bus this way. Thanks for making our lives just that much more intolerable.

  76. Angela Kennedy

    @ Tony Sidaway.

    So you DON’T condemn the shocking misrepresentation of legitimate, non-critical advocacy activities as criminal harassment, and you DON’T care that actual people (some extremely ill) are being falsely accused of harassment?

    I see.

  77. Angela Kennedy

    @ Josh. I don’t think you have read the ‘myriad’ posts. Khaly Castle summed up the situation extremely well recently, when she wrote on her blog:

    “Patients are not pushing for a favorite pathogen. Patients are pushing for real science to occur and to take its course before the door gets slammed on ANY potential avenue of study. Patients are not stupid and are tired of being treated as such. Patients are particularly irked that they point out the discrepancies in scientists’ and government’s claims, and said scientists and government continue to push the mistruths forward as if by saying it loud enough and long enough, it will be true.”

    I know it’s EASY to misrepresent present patients and their supporters as over-emotional, reclacitrant, irrational hostiles who get fixated on things, and certainly this is a common phenomenon . The ACTUAL situation is somewhat different.

  78. Angela Kennedy

    At RS. Thank you very much for the link that discussed the issue of Willie Hamilton. It is astounding how those seeking to express concerns about standards in public life, and adverse effects of not adhering to those on patients, have become, in a matter of weeks – due to an amazing negative PR campaign – seen as committing ‘harassment’, ‘abuse’ and ‘intimidation’. If people look at the various articles and programmes (including the Hawkes article in the BMJ), one can see how the bulk of these is devoted to criticising NON-CRIMINAL actions. At one point Hawkes, for example, places official complaints such as those to the GMC (a recourse all members of the public have access to) as on the same plane as animal rights group violence!

  79. Robert

    @Josh

    Please enlighten us, how exactly and scientifically have human gammaretroviruses been dismissed? Don’t forget XMRV is only one variant, others include and are not limited to polytropic and modified polytropic. XMRV VP62 is a strain. So is Vp35 and so is VP42. Either you can discuss the details of the findings and say why you feel this. It is a fact however that no scientific evidence exists to refute the ME/CFS findings of 3 published positive studies, nor the handful of prostate cancer studies. There are over 10 more papers about to be published too.

  80. Robert

    @ Tony Sidaway

    I would rather believe a quote from the police saying they are investigating and not filing away a claim, which I do think is more likely, except in the case of the gun threat. But that being in the US, you have to wonder why the UK media has been so interested. I would also question what disease any of the people they are accusing have. What if it is a Gulf War Syndrome person who is fed up with the Wessely School. It is impossible to tell, because the stories are not written for everyone to know any of the details and judge for themselves.

    What tiny minority of people are these commentators talking about anyway. Most patients are crying out for help, that has nothing to do with what a couple might have done, and for which we have no proof that they have. Alleged criminal acts have nothing to do with the disease and what the medical establishment are doing to the patients. Now that is criminal.

    When people are fighting for their lives they have a right to be angry, but I do think these people are pretending to not have a spine when it comes to those legitimate complaints. In fact we know they are running to the media to keep their jobs going. It has nothing at all to do with science.

    The PACE trial failed. If they can’t deal with that maybe they should try their own CBT.

  81. gwatkin

    ME/CFS Researchers Face Threats from Militant Islamic Extremist Terrorists
    http://niceguidelines.blogspot.com/2011/08/mecfs-researchers-face-threats-from.html

  82. Jack

    I do wish people would read the article to which Carl referred.

    ‘‘ACCORDING TO THE POLICE, the militants are now considered to be as dangerous and uncompromising as animal rights extremists.’’

    And: ‘‘a woman PROTESTER who had TURNED UP AT ONE OF HIS LECTURES was found to be carrying a knife’

    And: ‘‘abandon a collaboration with American doctors after being told she RISKED BEING SHOT’

    Also:

    And: ‘another was PUNCHED in the STREET’

    For patients who are confined to their beds or their homes this would not be possible – would it?

    But: ‘‘All said they had received death threats and vitriolic abuse’’

    Now that IS possible if some of these comments are anything to go by i.e. use of the internet.

    ALSO: ‘NONE of the scientists contacted by the Observer believed chronic fatigue syndrome was purely psychological. ALL thought external causes were involved.’

    ‘Wessely has installed speed dial phones and panic buttons AT THE POLICE’S REQUEST and has his mail X-rayed’

    @45 Mary Schweitzer ‘Myalgic Encephalitis’ I don’t know much about the history of this diagnosis – but when did Myalgic Encephalomyelitis replace Encephalitis? I am genuinely interested.

    From Jack @31 NOT Jack @52

  83. gwatkin

    @ Angela Kennedy. It’s Professor William Hamilton. Willie was a well-loved if controversial Scottish Labour MP who died in 2000. Professor Malcolm Hooper’s allegation that Dr (now Professor) Hamilton misled the judicial review of the NICE CFS Guidelines, thus perverting the course of justice, is still available on the internet, two months after posting. Interesting that nobody has come forward to demand it its removal, or indeed to threaten Hooper with legal action for libel.
    http://www.meactionuk.org.uk/HamiltonandHawkes.htm

  84. Angela Kennedy

    @ gwatkin.

    Thank you for correcting me on that. The last thing I’d want to do is cast aspersions on Willie Hamilton, the Scottish MP! Nor would I want to be getting over-familiar with Professor William Hamilton, for that matter.

    @ Jack. Between the Hawkes BMJ article a few weeks, who admitted that ““…campaigners have stopped short of the violent activities of the animal rights groups…” (even while he insinuated official complaints were on a par with animal rights violence!), and the Observer article this Sunday, the police have allegedly decided that “the militants are now considered to be as dangerous and uncompromising as animal rights extremists”. When/how did this happen? Or are we seeing a play on words here? Who are ‘the militants’for example? Does this term include Professor Hooper, the ‘badass’ who has written various letters of official complaint and concern about scientific methodology? HOW did the police decide ‘the militants’ are like animal rights ‘extremists’? Was some harassed and busy detective, in charge of investigating an unsolicited email, approached and did someone say to him or her “Is it possible they are a BIT like each other?” and the detective said ‘Possibly. I gu-e-ss…”? It is reasonable to wonder such a thing- precisely because of the unreliability of the allegations made.

    The way the ‘death threats and harassment’ examples have been vague, anecdotal and unsubstantiated (and also unreliable- we have seen already the problem around deeming the comment ‘you will pay’ a ‘death threat’!) but are juxtaposed and conflated with solid examples of NON- CRIMINAL, LEGITIMATE activities such as correspondence to official agencies, SHOULD be setting off alarm bells, in the reasonable and analytical, about the inherent unreliability of this whole campaign to discredit ME/CFS sufferers and their supporters: the vast majority, like myself, who have NOT engaged in criminal activities of harassment, abuse or intimidation, but who, reasonably, object to the claims and belief systems held by people such as, but not limited to, Professor Wessely. Such belief systems have led to people having their serious, dangerous physical illnesses subject to psychogenic dismissal and the adverse effects of this (including risk to life and health), and the construction of their characters as mentally unstable and unreliable, malingerers and hypochondriacs. As they and their supporters are not obsequeous masochists, they have protested about this situation.

    I can also answer your question in advance re ‘Encephalitis’. It appears NEVER to have been ‘Myalgic Encephalitis’. It has always been ‘Myalgic Encephalomyelitis’ since the term was coined, by doctors I hasten to add. Unless someone has documented evidence of it ever being ‘myalgic encephalitis’, of course? I have never seen any myself.

  85. Robert

    @Jack

    I think most are saying here what they would like to have said to the newspapers who blocked them.

    But those scientists you say only think it is a bit of both, physical and mental, they don’t think that. Read their work, they are playing word games. Also, there is no such thing. There is only the disease and secondary depression. Thoughts don’t make people sick. There is no scientific evidence of that.

  86. Irene Thorpe

    My open letter to the Guardian newspaper

    Dear Jessica

    I understand you are looking for Personal stories regarding the revelation that suicide rate are high in people with chronic illness. My story below will show you that one does not do not have to be depressed or have any inclination of ending ones own life to do the deed,but it is the need to end ones continuous suffering of pain ,distressful physical illness symptoms and abuse by medics media and politics that lead to the decision of committing suicide

    There are many people like me who are severely ill with ME.Where do we go when there is nowhere to go.

    I was stuck down in such intolerable pain after I had tried to swim myself better. One of my GP’s had been to a fatigue conference led by one of the Doctors who have been complaining of death threats etc in all major papers this week and who had come away with the take home message that exercise was the only way of eradicating my illness. My heath disintegrated so badly in the few days after I had begun swimming sessions that I was rushed into hospital as a medical emergency. I was disbelieved by the specialist who’s care I was under.I was not allowed help to get to the toilet and I could see they were watching me carefully.I was offered a paracetamol for the excruciating pain that was so bad my teeth were clamped together. I asked to go home four days later because I knew I was not being believed I was ill and this disbelieve was all because my GP had told them he suspected I had ME.

    The day after I came home my husband called an ambulance as I was deteriorating badly and I could not breath.(Years later I found it was due to the intercostal chest muscles which had cramped.). I was evicted on a cold damp day in just a flimsy nightdress. I was denied a blanket and a drink of water. and told it was all because I had not had a baby. As I lay in bed at home wondering where do people like me go when there is nowhere left to go, I suddenly realised I had lots of unused antidepressant tablets scattered all over the house. Unused because they were useless to me,they made me sick, and I was not depressed but very physically sick. Sick and nowhere to go. I pleaded with my husband to find out all the pills and he brought to me one and a half pints worth. I looked at them and said. ”Please flush them down the toilet for me I really don’t want to take them but I have no choice but to down the lot”. The sole reason for me not taking an overdose was because both myself and my siblings have had to live with the suicide of my mother when we were just young teenagers.My mothers suicide also relates to the lack of care, support and understanding of an ME type illness. My family know what it is like to have to live with the grief ,blame and life long after trauma of a family member committing suicide and I just could not do that to my family again..My husband said to me he had been told ‘secretly’ not to help me at all. I spent 18 months in a dark quiet back bedroom. My sole carer was my full time working husband.I had been denied even an assessment visit from social services. I was bed bound and could not lift my hands to feed my self. and could hardly swallow and talk. I could not go to the bathroom yet I had spent 12 hrs a day, without assistance just laid there in intolerable pain waiting for my husband to come home.. He hid me there to protect me from being sent to a mental ward where I did not belong. What I needed was pain relief and I will note until this point I had never taken even a over counter pain medicine in my entire life.

    ME is a physical illness as defined by The world health organisation. and there are many research papers that show physical abnormality yet here in the UK all lay people get to see and hear are the views of these few Psychiatric researchers and clinicians who have a very biased view not based on this centuries system biology technology.their views are not supported by the WHO and they have views which has been discredited by science. This is why we are getting upset with those few psychiatrists and their very powerful friends portraying ME people as some sort of hysterical, militant, socially backward members of society with false illness beliefs. All we want is the same respectful research as other illness have managed to procure. Nothing more and nothing less. This most recent media attack on this very physically sick and neglected group of patients initiated by some Medics who profess to care for them does nothing to prevent more suicides ,and assisted suicides, of people like me who have done nothing wrong to society expect to come down with an illness that is not only disbelieved by some but ridiculed as well..Nothing has changed in more than too decades of my being physically ill.The behaviour of these few psychiatrists,I believe one of them has even turned to BBC world news to spread his sob story worldwide, and all the news reporters who are regurgitating this old news are literally KILLING people

  87. RS

    These are some quotes indicating how serious CFS is.

    “The people with Chronic Fatigue Syndrome are in fact profoundly ill. They are as disabled as anyone with AIDS, with breast cancer, with coronary artery disease.” William Reeves from the CDC

    “I split my clinical time between the two illnesses (CFS and HIV), and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.” Dr Kilimas

    ”ME/CFS is actually more debilitating than most other Medical problems in the world, including Patients undergoing Chemotherapy and HIV Patients (until about two weeks before death.)” Canadian ME/CFS Consensus

    “I have treated more than 2500 AIDS and CFS patients over
    the past 12 years and my CFS patients are MORE sick and
    MORE disabled, every single day, than my AIDS patients are,
    except in the last two weeks of life!” Dr. Marc Loveless

    “Research has shown that M.E. has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or haemodialysis. It is comparable to end-stage AIDS, i.e. to how ill and disabled an AIDS patient is 2 weeks before death.” Hooper and Marshall

    “CAN you imagine not sleeping for 48 hours, then running a marathon with a hangover and a dose of flu? That’s how it can feel to have ME.” Ceri Isfryn

    [CZ: RS--it would be helpful if you could include url's so that we can see where these quotations come from, and understand their context.]

  88. RS

    “RS–it would be helpful if you could include url’s so that we can see where these quotations come from, and understand their context.”

    ****************
    http://livingwithchronicfatiguesyndrome.wordpress.com/2009/11/16/how-severe-cfs-is/

  89. gwatkin

    ‘Professor Ola Didrik Saugstad compares the treatment of today’s ME patients with that of lobotomy patients decades ago and says: “When the full history of ME is written one day, we will all be ashamed of ourselves.” ‘
    http://esme-eu.com/media/esme-press-review-2009-article260-113.html

    Pediatrics Professor Ola Didrik Saugstad was one of the researchers who gathered in Stavanger this weekend. Here he takes strong issue with the Norwegian health care treatment of the sickest ME patients.

    “Sometimes I think that the treatment of the sickest patients can be compared
    with medical abuses that happened in the 1960s and 70s. Like then, patients today are totally defenseless,” Saugstad told Dagbladet. He is critical of those who wish ME sufferers to be offered behavioral therapy and “Lightning Process”. “Perhaps the sickest ME patients are our current lobotomy patients? I understand that some think it can be hard to compare with a lobotomy, but it happens with those who are most severely affected by ME is often the abuse” Saugstad said.
    http://www.serendipitycat.no/wp-content/uploads/2009/06/DB_130609_Meirleir.pdf

    Saugstad is one of Norway’s leading medical researchers.
    http://en.wikipedia.org/wiki/Ola_Didrik_Saugstad

    Irene Thorpe’s terrifying story of abuse, humiliation and denial of pain relief by the British NHS suggests Saugstad isn’t exaggerating.

  90. Dr. Jose Montoya, associate professer of medicine, infectious diseases, at the Stanford University Medical Center, discussing CFS and current research on diagnosis and treatment at a conference held at Stanford’s alumni center in California, March of 2011:

    “Hopefully, one day, my dream is that our medical community will produce a formal apology to the patients that – not having believed them all these years – they are facing a real illness”.

    http://www.meassociation.org.uk/?p=5141

  91. Nonchalant

    From the comments here:
    http://www.meassociation.org.uk/?p=7713
    “The actual newspaper took up an entire page with the heading:
    Scientists face stream of ME death threats and then the subheading:
    Assaults, hatemail and knife attacks are the daily fear of researchers into chronic fatigue”
    The McKie article stated “One researcher told the Observer that a woman protester who had turned up at one of his lectures was found to be carrying a knife.” Was that Simon sez? And that most extreme point gets turned into large print, what most people will remember — “Knife Attacks Are the Daily Fear Of Researchers”.
    Propaganda works. Remember — Saddam Hussein/911/WMD/Mushroom Clouds? A lot of people still believe that.
    Now many in our patient community feel obligated to state that they are not terrorists and do not support terrorism; and they may be shamed into silence. It’s reminiscent of “No, Senator McCarthy. I am not a communist and I do not support communism.” Here’s what Laura Hillenbrand so eloquently wrote about overcoming shame from her severe ME:
    http://tinyurl.com/3p8kkmy
    The patient community wants respect and much more good science. We are HUMAN rights activists.
    Roy

  92. David B. Benson

    Khaly Castle @79 — Thank you.

  93. Josh

    @Angela – You are right – I haven’t read every single one of the anti-science responses. The first dozen essentially carbon copies were enough, and I have read the same exact content from climate-deniers, autism promoters like Jenny McCarthy, etc. Every single one of these has the exact same tone – a focus on wanting a particular result and justifying all sorts of behavior to support that result, truth be damned.

    Let’s review the ACTUAL facts, instead of the make believe ones:
    - Lombardi’s EXACT study and methodology have been replicated several times, without producing supporting results

    - Complementary approaches using other techniques have been performed, without producing supporting results. Ascertions that the wrong assays were used are fairly nonsense – different assays are not the say thing as wrong assays. The whole point was validation with differing techniques to ensure that the results were not an artificat of a single flawed technique. That’s how science works, even if it allows people who don’t understand the nuances of differing assays an easy notion to attack.

    - entirely plausible explinations concerning how Lombari produced erroneous results have been presented and substantiated

    - the only positive results were from Lombardi, who has been rather unethical in pushing the results without getting further validation (and without basis also linking XMRV to a host of other ailments), while simultaneously being hostile to any efforts to replicate the results

    Now one can take a stance that an entire cadre of unrelated scientists with not plausible motive have all conspired to persecute Lombardi, and by extension everyone who is currently suffering. People do take a perverse comfort in feeling like they have some hardship for a reason even if that reason is a fairly illogical “the evil scientists are stopping the cure”. A much more plausible stance is that Lombardi either intentionally or accidentally produced erroneous results, and especially after seeing how much there is to gain, has not retracted the results. Occam’s Razor only really favors one of these explinations.

  94. Three Chord Monty

    I believe that Mary Schweitzer made a mistake–yes, it is encephalomyelitis, not encephalitis. You’re slipping, Mary! Just kidding. It was a great post.

    I’ve already left a detailed post I think got caught in a spam filter, so I’ll see if I can’t break this up to get it across. I began by attempting to address Mr. Zimmer’s requests for URLs on the statements provided in a previous post.

    In the time I wrote this, someone may have provided these already, but here goes:

    http://sacfs.asn.au/news/2009/09/09_26_transcript_dr_reeves.htm

    http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/

    (6th question down)

    http://www.cfids-cab.org/MESA/ccpc.html

    http://www.cfids-cab.org/MESA/ccpccd.pdf

    The Canadian Consensus Criteria was published, if I recall, in the peer-reviewed Journal of Chronic Fatigue Syndrome, which is no longer published.

    The quote from Dr. Loveless is said to be excerpted from testimony before Congress in 1994 but without digging deep it is difficult to find a reliable source. It is likely in an archive of Congressional testimony but I will have to search for that later as I wanted to post this first.

    The Hooper quotes are is also difficult to find a reliable source, though I would, anecdotally, agree with them wholeheartedly–if anything, they are an understatement!

    Reliable by the standards of the ‘evidence, please’ crowd who do not grasp why there is so little evidence when it comes to ME/CFS, not ‘reliable’ in the sense of what’s actually realistic, accurate, and true. I choose to play by their standards, yet find that they are invariably unwilling to consider information from sources whose veracity matches their standards. I have no issue with their standards, only their hypocrisy. Nobody asks why there is so much research devoted to hypotheses regarding psychological causes and treatments while there is a dearth of funding for research suggesting objectively measured biological abnormalities in ME/CFS, let alone a non-psychological cause or treatments.

  95. Three Chord Monty

    The studies that are published–like these

    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract

    http://jama.ama-assn.org/content/274/12/961.abstract

    http://onlinelibrary.wiley.com/doi/10.1002/ana.22389/abstract

    http://jcp.bmj.com/content/61/6/730

    http://www.ncbi.nlm.nih.gov/pubmed/21749371

    http://www.ncbi.nlm.nih.gov/pubmed/20497461

    and many more, but I think you get the point–don’t get the press that ‘death threats’ get, now, do they. Not to suggest that the allegations are untrue, and certainly not to justify them. But as heinous as they would be, respectfully, this aspect of this issue is a tempest in a teapot.

  96. Three Chord Monty

    Have you seen this, Mr. Zimmer?

    http://report.nih.gov/rcdc/categories/

    CFS gets how much in funding?

    Comparing diseases and associated needs is distasteful at best and disgusting at worst. But, for Pete’s sakes, we’re human beings. Is there a reason why we shouldn’t look at this, considering the unspeakably physically debilitating nature of this disease, and not be tempted to do so?

    I could quote-mine Simon Wessely, (taking a look at this link speaks for itself, frankly…

    http://www.ncbi.nlm.nih.gov/pubmed?term=simon%20wessely%20chronic%20fatigue%20syndrome

    Peter White, Trudie Chalder, and Michael Sharpe, and it would not present a pretty picture, to say the least. However, quote-mining isn’t even necessary, although their statements could be presented in a fashion that would seem out of context in their bias, yet actually aren’t. Take a look at the NICE Guidelines, if anecdotal reports of what is done to ME/CFS patients in the UK don’t come off as disgusting enough. Consider the plight of patients in this country, where anecdotally you will find that most patients are not taken seriously by their doctors, and many just don’t bother anymore. The CDC and others take great care to say ‘this is a serious condition,’ yet their actions indicate otherwise. Classic CYA. Case in point:

    http://www.alphagalileo.org/ViewItem.aspx?ItemId=89186&CultureCode=en

  97. Three Chord Monty

    I apologize for serial posting. I wanted to try to insure that my entire post would be displayed. Can’t think of a better way to do it.

    But, hey. I’m just a patient who some would call an activist, which means that I would now be classified as an anti-science terrorist. Nice. All this, for getting sick with a disease that is almost impossible to describe (which is part of the problem). Cognitive difficulties don’t help, yet cognitive behavioral therapy is not effective. Says me. Now…that statement of mine means nothing, right?

    Well, I am not a scientist, and I am not qualified to evaluate scientific papers. Would you care to compare these? This would be the PACE trial, published by the aforementioned White, Chalder, and Sharpe, for which a protocol was published four years ago in Biomed Central

    http://www.biomedcentral.com/1471-2377/7/6

    and for which the eventual initial paper was published in the Lancet this past winter

    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2811%2960686-7/fulltext

  98. Three Chord Monty

    Almost no journalists even bothered with questioning the cohort used for patient selection. David Tuller did, however, in the NY Times:

    http://www.nytimes.com/2011/03/08/health/research/08fatigue.html

    The researchers responded, and I ask you to take a good look at Mr. Tuller’s response:

    http://www.nytimes.com/2011/03/15/health/15letters-STUDYINGAFAT_LETTERS.html?_r=3

    Nobody takes notice, Mr. Zimmer. Nobody cares. Because everyone knows chronic fatigue syndrome is a matter of lazy, tired fakers, malingering hypochondriacs, and nobody knows what Myalgic Encephalomyelitis is or means, and the CDC says this condition is (or can be, actually, though given how these things are reported…you get the idea…I trust) a matter of childhood adversity or sexual abuse.

    http://archpsyc.ama-assn.org/cgi/content/short/66/1/72

    This is what we’re up against, and, until XMRV, the press generally accepted these sorts of things–and why wouldn’t they? This comes from the CDC! Who knows better than them? Who questions their authority, knowledge, and experience?

    This is the outfit that employed Reeves (who somehow managed to lose his job even though his whistleblower status–you do remember that the CDC chose to illegally and unethically divert CFS funding some 15 years ago, right?), Jones (who’s still there), and Vernon, who co-authored this

    http://www.biomedcentral.com/1741-7015/3/19/abstract/

    and is now scientific director for…the organization that is the largest advocacy outfit for patients in this country. And you know what? She could be as scientifically sound as the day is long, but it’s very difficult to accept someone whose work has made things worse for us as someone working on our behalf. That’s something that her defenders just don’t get. But, hey, those bigwigs at that org do pull in the bucks. But that’s another matter, although it is just another example of how we have so few allies willing to take a look at the picture all of this creates and how it affects us.

    In the past year, journalists (in addition to Mr. Tuller, the Wall St. Journal’s Amy Dockser Marcus, and other figures such as Llewellyn King) have chosen to take a look at this issue that produces results that differ from headlines that appeared in Newsweek back in…1990? Different from the coverage offered by the NY Times when Lawrence Altman was there and virtually every piece gave far too much weight to the voice of the late Stephen Straus. The less said about him, the better, although Hillary Johnson’s book, Osler’s Web, tells the story better than any other accounting of what great strides science has afforded those of us enduring this brutal disease in the beds we can almost never leave.

    Oh, I know. Waaah. Poor us. But if we could ACT UP, we would (although I would guess that if we could so much as organize a demonstration, we wouldn’t have been put off as effectively as we have been by medical science…does that make this in any way analogous with “Catch-22?”). Some would, unfortunately, threaten researchers, obviously. But what’s not told here is the frustration that leads to this. Left unsaid is Simon Wessely’s role in denying the physical effects of a water poisoning accident in a place called Camelford in 1988, or how he’s ‘advised’ the UK government on Gulf War Illness. Not mentioned is that one of the principals quoted in the piece once wrote that it might not be accurate to characterize what happened in Rwanda in 1994 as genocide. Almost universally outside this community of patients, the point of view of Wessely, Fox, McClure, was unquestioned.

    Well done.

    McClure’s paper could have been scientifically accurate as they come, but nobody asked how it made it to the journal it was published in one month after submission a mere seven weeks after the project was even proposed. Is this normal in the world of securing funding and IRB approval? Nobody cared. Hell, the more recent XMRV papers could all be correct, and they’ve certainly been taken as such. I’m not going to make this about XMRV, but there were questions about all of the early XMRV-negative-in-CFS-patients papers that nobody seemed interested in. Maybe someday they will be.

    For now, the distorted, warped view of the situation as presented by the Guardian piece has done its job, done it well. This would be laughable if it weren’t so unbelievably perverted and disgusting. And you know what? They didn’t have to do this. The psychiatrists will win. “CFS,” in spite of the recent publication of updated ME criteria (which will, like everything before it, be roundly ignored), and other evidence as to what this disease is and what it does) will end up in the DSM-5 under the banner of Complex Somatic Symptom Disorder. It’s a done deal, I have little doubt…and given how we’ve always been treated, I could care less if that sounds paranoid.

    Does this come off like a conspiracy theory? Well, I’m sticking to the most reliable sources I can muster. How you interpret it is, it goes without saying, up to you, sir.

  99. XMRVPositive_UK (Twitter)

    Thanks for writing about ME CFS.

    Everyone should remain open minded about XMRV and ME CFS, we are just at the start of the story.

  100. Angela Kennedy

    Josh, your ad hominem misrepresentation of people’s responses you don’t agree with as ‘anti-science’ is ludicrous.

    Plus- Lombardi’s methodology has NOT been ‘replicated’ let alone exactly. The cohort discrepancies alone blows that claim of yours right out of the water, and everything else you claim in that post becomes unreliable because of that first error you have made.

    But I’m not even an ‘XMRV believer’, which my citing of Khaly Castle’s comment demonstrates.

    You appear to be constructing a straw man here- because the main issue on the comments blog is not about whether ‘XMRV’ is the ‘smoking gun’ here at all, it is about the way ME sufferers and their supporters are, falsely, as it turns out, constructed as harassers and irrational recalcitrants with this recent negative PR campaign. I’ve not been writing about XMRV, which makes your directing your post at me odd, to say the least, UNLESS you are attempting to draw attention away from my points.

  101. Three Chord Monty

    Although I should have been able to wrap up my point in five posts, there is one other item I should probably mention, as it almost invariably becomes a political football in these discussions. That would be where I alluded to the CDC offering that CFS is a ‘serious’ condition. Time after time in these sorts of discussions, a poster will use such a point to suggest (or state boldly) that this is indicative of a poster attempting to frame CFS as ‘serious,’ while a condition that does involve some sort of primary mental, emotional, or psychiatric/psychological cause or effect as…something that is not ‘serious.’ Or ‘real.’ This happens all the time. It’s used against us mercilessly. Because obviously we consider mental illness to be a walk in the park!

    As if.

    We get caught up in the usage of these terms–with most of us being laypersons–and then taken to task as though we’re professionals who should know better. “Well, there’s nothing shameful about mental illness, and you are perpetuating its societal stigma, and we all know CFS is a mental disorder, so why don’t you just own up to it and stop denigrating the mentally ill.”

    Of course, if we were dealing with a condition that was primarily a matter of mental illness–there are treatments for that. We’d be happy to pursue them. What reason would someone have to be ashamed of taking an antidepressant if it worked (many generally worsen symptoms)? Exercise is said to be effective for depression–right? So if it’s just depression, why don’t we just exercise? Because it makes us worse. We’re not afraid of it because we’re lazya$$es. But we’re concerned, and many of us were very active prior to becoming ill, including more than a few athletes in our ‘ranks,’ about the horribly adverse physical effect it has on us. Of course, in the “CFS/ME” Oxford cohort–how many people who write about this even know the first thing about the differences in the criteria? used for the PACE trial…not so much. Result: Western media has a great February lede: CBT, Exercise Safe and Effective for CFS.

    Of course, for those with mental illness…pondering how this condition is different, even though we’re treated similarly by physicians and medical science…look down upon the mentally ill or depressed? Like that scene in “Patton?”

    No.

    Not better, not worse. Different. Whatever they’re suffering from? People suffering from depression? People suffering from psychosomatic illness? They suffer. Which we would probably know even if we weren’t endlessly reminded of this in far too many discussions about ME/CFS. The mental illness gambit. Again, well-done, those who do it. Before you framed us as a monolithic community of anti-science terrorists, after we were overachievers who woke up one day to be malingering, lazy hypochondriacs, we got off on maligning the mentally ill, and those with depression and such.

    Because we’re just a bunch of really nasty people.

    Well, to clarify, my mention of the CDC stating that they consider this to be ‘serious,’ well, okay, this is in the context of an awful lot of people, including medical professionals and researchers thinking it’s anything but. Or that it’s serious mental illness. Or serious depression. And it’s difficult to advance this discussion without giving rope to hang us with the label of those who would contribute to the awful stigma the mentally ill face in society.

    The thing is that the CDC and the other agencies (Office Of Women’s Health, etc.) who actually do research “CFS” is that they do so under the banner of infectious disease. They’re supposed to be investigating pathogens. Now, I’ve seen some things recently that suggest that there may be a virus involved in depression, or schizophrenia, or another mental illness. I can’t remember. But so far as I’m aware, by and large, these are not considered to be infectious diseases.

    The CDC division that researches CFS operates from the point of view that there are pathogens involved, even though they’ve gone out of their way to scuttle any association because, in the absence of research examining subtypes, they do not find any singular pathogen to be universally present in their cohorts. Again–well done.

    The issue of so much research undertaken from a division supposedly investigating pathogens partnering up with a psychiatrist next door at Emory University who looks not for pathogens, but for childhood abuse…that doesn’t make for such great ink when you have a public who is disinterested in CFS at best, who thinks it’s a bunch of baloney, an ‘Oprah’ disease, if you will, and who react in classic ‘I told you so’ mode when they see something that does make for great ink. Like researchers receiving death threats. On the basis of what I think the police said involved less than 20 individuals, the condemnation from this story, and the ones that ran a few weeks ago, has been remarkably effective.

    What do you think, Mr. Zimmer? I have to believe that you can’t view all of this as measuring up to the scenario painted by the Guardian. Which took one speck of nastiness and turned it into an international hard news story, as had other British dailies not long ago. I have to believe that you are willing to take a look at the links I posted. I’m not flogging XMRV (although I reserve comment on that), and I’m not trying to suggest that the only true truth is available on the David Icke forums. Or whale-dot-to. Or infowars. Or in Bible prophecy. If you examine what I linked to, is what I’m saying so farfetched? Or do you believe, as many do, that CFS is a functional somatic syndrome?

    Is it possible that you think there’s just an inkling of truth in the idea that there are some who choose to (falsely) portray ME as exactly that, in spite of ample evidence to the contrary?

    And that this point of view is, to the detriment of millions suffering in beds they cannot leave from, accepted by many if not most people, even if they’re not necessarily willing to admit it?

  102. Nonchalant

    Now, in Times Higher Education, charges are in plural. “The militants, who object to any suggestion that the illness has psychological causes, have turned up at lectures with knives, punched scientists in the street and issued death threats, it was reported on 21 August.”
    http://tinyurl.com/3cwvbtd
    Note the lead cartoon with the “I’d terrorize an M.E. scientist but I’m too tired”
    How much worse is this going to get? I remember how horribly AIDS patients were treated early on.

  103. Angela Kennedy

    I’m thinking of getting a T-shirt, like the ones that say “I am Spartacus”: only this one would say “AM I a militant”? Maybe I’ll get one for all those scientists and clinicians who are not convinced by the psychogenic explanation for ME/CFS. They can wear them under their lab coats and suits maybe.

  104. gwatkin

    In March, the ME Association complained to the Science Media Centre (director Fiona Fox, special advisor Simon Wessely) that the SMC was spinning the results of the PACE trial -

    “All of the SMC ‘medical experts’ who provided quotes for the media were strongly in support of the PACE trial results – with nobody pointing out any of the flaws or criticisms of this study. … We would therefore be grateful if a meeting could be arranged to discuss how the SMC currently covers ME/CFS and whether the SMC is prepared to widen the range of ‘medical expert’ opinion when covering ME/CFS research in the future.”
    http://www.meassociation.org.uk/?p=5041

    The current media blitz by is by way of a reply.

  105. RS

    “Yes – It’s All in Your Head. Dr. Ravindran, Dr. Baraniuk’s young assistant, took great delight in telling me again and again that yes, ME/CFS was indeed all in my head. He didn’t mean it was psychological, though. Dr. Baraniuk’s proteome paper stated that their “proteomic model provides initial objective evidence for the legitimacy of CFS as a distinct neurological disease’ Indeed, in an interview Dr. Baraniuk stated that he believed his study “ushers in a whole new era for identifying [and] recognizing the legitimacy of these disorders.” (!).”

    http://www.ei-resource.org/columns/phoenix-rising/proteins-on-the-brain:-spinal-tapping-for-chronic-fatigue-syndrome/

  106. Like most patients and doctors, I am against violence. The suggestion that Simon Wessely was threatened with physical harm is sad.
    It is sad that there was a violent threat , it is also sad that the protagonist was moved in such a manner.
    What did Simon do to receive such a threat ? Why are people so antagonistic ?
    Simon was one of the initial group who defined the Fukuda criteria in the Annals of Internal Medicine, this construct is the basis ME/CFS as a physical disease to the exclusion of a psychiatric condition. Psychiatric problems lead to exclusion from Fukuda , but subsequently the British thinking reverted to a psychiatric rationale. This resulted in patients being treated by cognitive therapy (CBT)
    The MRC controls the granting of research funds, Simon is an advisor the fund allocation. Over the past decade research funds were granted almost exclusively to psychiatric research. Perhaps this approach inflames patients who suffer from a physical disease, the inflammation then erupts in violent outrage.
    My sympathies are with Simon but rather than hire bodyguards, he should consider the possibility that this disease is a physical condition, a la Fukuda and Canadian Consensus. Presently the psychiatric group still infer that this disease is imaginary, the complete thrust of British ME/CFS research.
    We should could neutalise the inflamed tension which has resulted in violent outbursts by providing research into physical aspects of ME/CFS. Testing research Ampligen and GcMaf treatment protocols would be a possible start.

  107. Andrew

    Deerek – Thank you for providing the excellent example of blaming the victim, and advising him to kowtow to threats. Bravo.

  108. gwatkin

    Can we be sure threats were made by patients with ME/CFS? Aggressive members of the Bad Science skeptic forum, run by the British psychiatrist and Guardian columnist Ben Goldacre, have repeatedly taunted and abused ME patients, and deleted evidence of doing so. It would not surprise me to learn that they or people like them made bogus threats to discredit patients and the disease.

  109. Through the Looking Glass

    Gwatkin:

    Good point. Everyone who claims to have CFS is probably just Goldacre pretending.

  110. Justin Reilly, esq.

    Dr. Zimmer,

    Please edit your post to reflect that the name of the disease is M.E. not “chronic fatigue.” Chronic fatigue is merely one symptom of the devastating neuro-immune disease Myalgic Encephalomyelitis.

    I agree totally with the on-point comments by Angela Kennedy and IMEA founder Patricia Carter, esq., supra. Prof. Wessley and colleagues have waged a decades-long battle on ME science; the oppression of ME patients is the real story. Please see the excellent publications of Prof. Malcolm Hooper, “Defiance of Science”, inter alia. Thank you.

  111. Nonchalant

    Articles are still being published in the UK. These are in opposition.
    Dr. John Greensmith starts a public letter:
    Dear Professor Wessely, I wonder if you realise the terrible distress you have caused amongst the M.E. Community with your “M.E. death threats” story, repeated in several broadcasts and newspapers, each time gathering a little more inaccuracy and venom?
    http://tinyurl.com/3de8bg2
    Prof. Malcolm Hooper’s response to the Observer article:
    http://tinyurl.com/43vfp6f

  112. Justin Reilly, esq.

    You have not corrected your references to M.E. as ‘chronic fatigue.’ Pls do so.

  113. Ginger Yellow

    British psychiatrist and Guardian columnist Ben Goldacre

    He’s an epidemiologist, not a psychiatrist.

  114. Robert

    @Ginger Yellow

    Where are you getting your information from. Goldacre is a psychiatrist. Here is evidence

    http://www.rcpsych.ac.uk/exams/results/partii-autumn2005.aspx

    He only writes papers of this sort of quality.

    Paper: Ben cooper*, William Lee*, Ben Goldacre, Tom Sanders, The quality of the evidence for dietary advice given in UK national newspapers. Public Understanding of Science, April 11, 2011. pdf. Media (Food Navigator). Media (The Guardian). Media (Radio 4).

    And these

    http://www.ncbi.nlm.nih.gov/pubmed?term=ben%20goldacre%20

  115. Patricia Sommer

    I think an ongoing conversation is needed but any violence crosses the line into ‘insanity’ and needs to be seen as such. Those that would use violence are mentally unbalanced.

    I was diagnosed with CFIDS in 98 and am severely disabled by this illness. My husband died in 03 leaving me where I cope alone along with the resultant economic challenges of severe disability. Coping alone with this as a severe disability in society as heartless, cold and uncaring as it is is a DEATH SENTENCE I am attempting to survive – moment by moment. I have my disabled widow’s benefits and have managed to hang on to ownership of my home but my life is seen and treated as worthless by society and even the social workers I have turned to for needed in-home help chose to consider my disability to not be severe enough to need any in-home help. I am bed bound most of the time where I have such severe muscle weakness I collapsed breaking all the bones in my ankle requiring emergency surgery where today I use a cane; walker with fold down seat when I go anywhere and this allows me to sit down in a moments notice instead of falling as I did one day while at Walmart shopping where those around me, because I was alone after my husband’s death, treated me as if I must have been drunk and did not lend a hand but instead left me on the floor to work at finding a way to make it to a bench to sit until the crisis passed. From then on I have used the rolling walker with hand breaks and fold down seat. I drive about 50 miles a year and only go shopping about four times a year where I have learned to survive on dried beans, peas and hot cereals that have a long shelf life where I have staples of salt and flour to cook flour food wraps to eat with the bean pea mixture which I cook up a huge stock pot every three weeks or so and freeze this mixture after placing it into recycled cottage cheese containers. I then have this to thaw out and heat in the microwave for a hot, nutritious meal. I am surviving but with a bit of needed help from these biased social workers who are the ‘gatekeepers’ locking me out of any help here I could be living a life of quality and also joy at this time instead of overwhelming despair. I also suffer from severe PTSD from having endured the past ten years of this nightmare reality alone after the death of my husband. I have even been targeted by two men who, over time, observed me out in my front gardens on my mobility scooter and put it together that I lived alone with severe disability and proceeded on four separate attempts to commit a home-invasion crime knowing I was alone and in bed at the time. I have a security camera which runs through my TV and DVR here in my bedroom with me and the last time these two men came up onto my front porch and triggered the heat activated security porch light they saw the camera and one told the other, as he pulled his hood back up over his head, ‘Let’s get the hell out of here,’ and as he left he made faces at the security camera showing just how degenerate he was. That security camera saved my life that night. They have not been back since that time but once a few weeks ago I did observe someone who triggered the security porch light, a male, trying to hide in the bushes where I was then able to notify the police. He soon left and was not caught. The police told me I need to have a hand gun and learn to use it for my safety as they are unable to respond to a home-invasion fast enough to provide any protection. This is my REALITY of surviving with severe disability from CFIDS after the death of my husband in 03. I am still trying to have the social workers understand my REALITY I am surviving alone 24/7/365 but so far their sentence of death by severe neglect is allowed to stand. I have had moments of thinking of ending my life but mostly I have manage to get beyond that where the severe PTSD leaves me too numb at times to feel much of anything and this allows for my survival. It helps me to realize why it was called ‘shell shock’ during WWII for it leaves me very numb at times. I take up to 60 mil of Adderall which is given to treat narcolepsy and this helps me to have some activity for activities of daily living but it has been weeks since I have had a bath as I am alone to do everything and have not made it that far down my ‘to do’ list where the Adderall is highly addictive and cannot be relied on solely everyday and I must have drug free days to prevent tolarance and addiction from being issues – so far so good on that effort. The Adderall has allowed for the dishes to be washed, which is not always the case, as I sometimes am unable to manage well and am ill in bed so much even with the help of Adderall but for the help the Adderall does provide I am simply thankfu but if the social workers could find a way to see beyond their biased views of CFIDS and allow needed in-home support my life would be one of quality instead of hoping I somehow can find ending my life more acceptable one day soon. For everyone severely disabled by CFIDS, especially if coping alone without good support, my heart goes out to you. Patricia

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The Loom

A blog about life, past and future. Written by DISCOVER contributing editor and columnist Carl Zimmer.

About Carl Zimmer

Carl Zimmer writes about science regularly for The New York Times and magazines such as DISCOVER, which also hosts his blog, The LoomHe is the author of 12 books, the most recent of which is Science Ink: Tattoos of the Science Obsessed.

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