Comments on: A Tale of Two Viruses: Why AIDS Was Pinned to HIV, but Chronic Fatigue Remains a Mystery http://blogs.discovermagazine.com/crux/2012/01/12/hiv-in-xmrv-out-how-scientists-deduce-what-does-and-doesnt-cause-a-disease/ Sat, 18 May 2013 10:48:00 +0000 hourly 1 http://wordpress.org/?v=3.4.2 By: kate s http://blogs.discovermagazine.com/crux/2012/01/12/hiv-in-xmrv-out-how-scientists-deduce-what-does-and-doesnt-cause-a-disease/#comment-2472 kate s Mon, 04 Mar 2013 13:30:00 +0000 http://blogs.discovermagazine.com/crux/?p=819#comment-2472 I am wondering if mycoplasmas are the underlying form for most if not all our immune compromised outcomes. World conference on mycoplasmas in Toulouse France summer 2013 I am wondering if mycoplasmas are the underlying form for most if not all our immune compromised outcomes. World conference on mycoplasmas in Toulouse France summer 2013

]]> By: Lisa M. http://blogs.discovermagazine.com/crux/2012/01/12/hiv-in-xmrv-out-how-scientists-deduce-what-does-and-doesnt-cause-a-disease/#comment-450 Lisa M. Mon, 16 Jul 2012 19:04:15 +0000 http://blogs.discovermagazine.com/crux/?p=819#comment-450 Thank you, Dr. Racaniello, for your informative article. And thank you all for such informative replies. I have had CFS/ME for just over four years. Like you, my life has changed dramatically. Clearly, this syndrome/disease is complex and confusing. I do hold out hope that we will have answers sooner rather than later. I'm grateful for the courageous few that have tried tirelessly to take on the mysteries of this disease. Please remember, too, that we will most likely never be able to get away from the ingnorance of people like Jon or GKGK or even Tc. Ignorance has always been a part of the human existence. I wish you peace. Thank you, Dr. Racaniello, for your informative article. And thank you all for such informative replies.

I have had CFS/ME for just over four years. Like you, my life has changed dramatically. Clearly, this syndrome/disease is complex and confusing.
I do hold out hope that we will have answers sooner rather than later. I’m grateful for the courageous few that have tried tirelessly to take on the mysteries of this disease.

Please remember, too, that we will most likely never be able to get away from the ingnorance of people like Jon or GKGK or even Tc. Ignorance has always been a part of the human existence.

I wish you peace.

]]> By: M.Davis http://blogs.discovermagazine.com/crux/2012/01/12/hiv-in-xmrv-out-how-scientists-deduce-what-does-and-doesnt-cause-a-disease/#comment-449 M.Davis Fri, 30 Mar 2012 14:32:11 +0000 http://blogs.discovermagazine.com/crux/?p=819#comment-449 I have had M.E. for 5 years now and believe it to be viral - undoubtedly. What strikes me most about reading the responses of other sufferers, is how reasonable we all are!! We write intelligently and politely for the most part, about our suffering and the lack of biological research being done. When really all we want to do is shout and scream about how damn ill we are but obviously we can't because then we would be accused of being 'mad' and the likes of Wessely et al. would be rubbing their slimy hands with glee. M.E. has taught me so much. I have the wisdom of a 90 year old at the age of 37. If we ever make some sort of recovery from this illness, we will be (more than) twice the people we were before. I just hope that some smart ass scientist hurries up and gets to the bottom of this all, so that I can go back out into the world and use what I have learned, to do some good for others. I have had M.E. for 5 years now and believe it to be viral – undoubtedly. What strikes me most about reading the responses of other sufferers, is how reasonable we all are!! We write intelligently and politely for the most part, about our suffering and the lack of biological research being done. When really all we want to do is shout and scream about how damn ill we are but obviously we can’t because then we would be accused of being ‘mad’ and the likes of Wessely et al. would be rubbing their slimy hands with glee.
M.E. has taught me so much. I have the wisdom of a 90 year old at the age of 37. If we ever make some sort of recovery from this illness, we will be (more than) twice the people we were before. I just hope that some smart ass scientist hurries up and gets to the bottom of this all, so that I can go back out into the world and use what I have learned, to do some good for others.

]]> By: Paul http://blogs.discovermagazine.com/crux/2012/01/12/hiv-in-xmrv-out-how-scientists-deduce-what-does-and-doesnt-cause-a-disease/#comment-448 Paul Wed, 07 Mar 2012 19:36:45 +0000 http://blogs.discovermagazine.com/crux/?p=819#comment-448 I first got sick when I was ten or eleven years old. I had a couple of polio vaccines around that time. 53 years later I am still sick, although I have had many spontaneous and inexplicable remissions. It appears spontaneously and it disappears spontaneously. Remission is a true story. What I have is crippling when the episode reaches the bottom of the cycle. The muscles have no energy to move my body without conscious exertion, and so everything is a struggle. Getting in or out of a chair is usually a struggle. Why am I better off than having had polio? Then there are phases of the episode that allow me to appear in public and appear to be well when really I'm falling apart while still able to shop for food or do other simple tasks. Everybody then just assumes I'm well again. I even laugh at times, and show micro-bursts of energy. This is very misleading to people. What can I do though? I want to live. Living means laughing doesn't it? I can't laugh in front of people or they'll think I'm lying or deluded about being sick. What I have makes me feel like I have a viral infection. I know viral infections. I used to be serially ill with head colds and flu like infections. Each episode was infused with and extended by a peculiar exhaustion and malaise lasting weeks. I would finally recover to normalcy but then I'd get another head cold and repeat the entire ordeal. This went on serially for 30 years with only rare and short breaks in between. Finally that phase ended in my forties. Now I never get colds - I have this never ending thing that feels like the malaise associated with the colds. I live for remissions but they are unpredictable and seem to not be connected with my diet or exercise or bed time or stress or lack of stress. Nothing makes sense. It's a total enigma. I first got sick when I was ten or eleven years old. I had a couple of polio vaccines around that time. 53 years later I am still sick, although I have had many spontaneous and inexplicable remissions. It appears spontaneously and it disappears spontaneously. Remission is a true story.

What I have is crippling when the episode reaches the bottom of the cycle. The muscles have no energy to move my body without conscious exertion, and so everything is a struggle. Getting in or out of a chair is usually a struggle. Why am I better off than having had polio?

Then there are phases of the episode that allow me to appear in public and appear to be well when really I’m falling apart while still able to shop for food or do other simple tasks. Everybody then just assumes I’m well again. I even laugh at times, and show micro-bursts of energy. This is very misleading to people. What can I do though? I want to live. Living means laughing doesn’t it? I can’t laugh in front of people or they’ll think I’m lying or deluded about being sick.

What I have makes me feel like I have a viral infection. I know viral infections. I used to be serially ill with head colds and flu like infections. Each episode was infused with and extended by a peculiar exhaustion and malaise lasting weeks. I would finally recover to normalcy but then I’d get another head cold and repeat the entire ordeal. This went on serially for 30 years with only rare and short breaks in between. Finally that phase ended in my forties. Now I never get colds – I have this never ending thing that feels like the malaise associated with the colds. I live for remissions but they are unpredictable and seem to not be connected with my diet or exercise or bed time or stress or lack of stress. Nothing makes sense. It’s a total enigma.

]]> By: Dr Snow http://blogs.discovermagazine.com/crux/2012/01/12/hiv-in-xmrv-out-how-scientists-deduce-what-does-and-doesnt-cause-a-disease/#comment-447 Dr Snow Wed, 07 Mar 2012 07:54:51 +0000 http://blogs.discovermagazine.com/crux/?p=819#comment-447 @GKGK What scientific evidence are you presenting for the Salem Witch trials? Words? Decades of research didn't find HTLV-1, HIV -1 or HIV-2. It also didn't find XMRV or other MLV-related viruses. You reasoning has no logic. @GKGK

What scientific evidence are you presenting for the Salem Witch trials? Words?

Decades of research didn’t find HTLV-1, HIV -1 or HIV-2. It also didn’t find XMRV or other MLV-related viruses. You reasoning has no logic.

]]> By: GKGK http://blogs.discovermagazine.com/crux/2012/01/12/hiv-in-xmrv-out-how-scientists-deduce-what-does-and-doesnt-cause-a-disease/#comment-446 GKGK Tue, 31 Jan 2012 02:28:18 +0000 http://blogs.discovermagazine.com/crux/?p=819#comment-446 Dr. Racaniello, I'm sorry to say that I think this is one of your weakest posts; maybe your weakest ever. It is entirely based on a huge assumption: that ME/CFS has a viral cause, or is related to viral infection in some way. It is a huge assumption. Your title should be "A Tale of a Virus and an Unknown" or something like that. I think almost all of the differences in history can be explained by the fact that HIV was quickly and accurately identified as the cause of AIDS. No virus has ever been identified as the cause of ME/CFS. Indeed, if 20+ years of research as taught us anything, it is that there is no viral cause of ME/CFS; certainly none has been found. Something that happened in AIDS in 2 years, has not happened in ME/CFS in 20+ years. At some point, absence of evidence should become evidence of absence. I think we are years past that in ME/CFS. But the politics of the disease drives a sort of "Zombie Science" where viruses must be looked for over and over and over and over, etc. Scientists who research other areas are met with pitchforks and ethical complaints. Your evidence of virus, as far as I can see, is these two sentences: "However, there is plausible evidence for an infectious etiology, including observations that the disease is known to occur in outbreaks. Furthermore, in many cases the onset of symptoms appears to begin with a flu-like illness. " However, all types of hysteria are commonly found in outbreaks! From the Salem Witch Trials to the recent school in NY. As for the starting with a flu-like disease, the timescale is so variable, and the research so sparse, I don't think it is reasonable to base a theory of virus on that, when decades of search for a virus has not found one. GKGK Dr. Racaniello, I’m sorry to say that I think this is one of your weakest posts; maybe your weakest ever. It is entirely based on a huge assumption: that ME/CFS has a viral cause, or is related to viral infection in some way. It is a huge assumption. Your title should be “A Tale of a Virus and an Unknown” or something like that. I think almost all of the differences in history can be explained by the fact that HIV was quickly and accurately identified as the cause of AIDS. No virus has ever been identified as the cause of ME/CFS. Indeed, if 20+ years of research as taught us anything, it is that there is no viral cause of ME/CFS; certainly none has been found. Something that happened in AIDS in 2 years, has not happened in ME/CFS in 20+ years. At some point, absence of evidence should become evidence of absence. I think we are years past that in ME/CFS. But the politics of the disease drives a sort of “Zombie Science” where viruses must be looked for over and over and over and over, etc. Scientists who research other areas are met with pitchforks and ethical complaints.

Your evidence of virus, as far as I can see, is these two sentences: “However, there is plausible evidence for an infectious etiology, including observations that the disease is known to occur in outbreaks. Furthermore, in many cases the onset of symptoms appears to begin with a flu-like illness. ” However, all types of hysteria are commonly found in outbreaks! From the Salem Witch Trials to the recent school in NY. As for the starting with a flu-like disease, the timescale is so variable, and the research so sparse, I don’t think it is reasonable to base a theory of virus on that, when decades of search for a virus has not found one.

GKGK

]]> By: Nancy http://blogs.discovermagazine.com/crux/2012/01/12/hiv-in-xmrv-out-how-scientists-deduce-what-does-and-doesnt-cause-a-disease/#comment-445 Nancy Sat, 28 Jan 2012 08:57:06 +0000 http://blogs.discovermagazine.com/crux/?p=819#comment-445 I was reminded that back before the mycobacterium that causes tuberculosis was discovered, sick patients were told they were harboring anger, harmful emotions and this was the cause of their illness. Same deal for stomach ulcers. Doctors were so sure that ulcers were caused by stress that Barry Marshal was practically laughed off the stage at conferences. So, let's hope the researchers just keep looking for some 'stealth' organism. I was reminded that back before the mycobacterium that causes tuberculosis was discovered, sick patients were told they were harboring anger, harmful emotions and this was the cause of their illness.
Same deal for stomach ulcers. Doctors were so sure that ulcers were caused by stress that Barry Marshal
was practically laughed off the stage at conferences. So, let’s hope the researchers just keep looking for
some ‘stealth’ organism.

]]> By: DLT http://blogs.discovermagazine.com/crux/2012/01/12/hiv-in-xmrv-out-how-scientists-deduce-what-does-and-doesnt-cause-a-disease/#comment-444 DLT Sat, 28 Jan 2012 01:10:40 +0000 http://blogs.discovermagazine.com/crux/?p=819#comment-444 I had or have the DISEASE that causes CFS. It was a sudden and severe onset in my central nervous system. You can't imagine what it's like to lose the very center of your being until you have a shock to your CNS. Six months before, my daughter had the same experience. Both of us now have the after effects of the viral infection that no one can identify. I have a compromised immune system. I once heard this syndrome referred to as HIV-negative AIDS - that's right on. My experience was that the many doctors I saw, including the folks at the Great Mayo, just didn't want to look for anything they didn't already know about. Even an infectious disease doctor I saw was angered that I would ask for tests - "What test's! Do you realize how many viruses there are?!" I believe Elaine DeFreitas saw the beast early on but couldn't get anyone to listen, especially her boss. I was pretty heartless toward my daughter. I had no idea what she was experiencing. I remember her lying on her bed, arms and legs stiff, fear in her eyes and I just thinking it will pass soon. Jon, may God bless you with a personal understanding like I have. Yeah, it doesn't kill ya, but a ruined life is worse than most people think it is. Imagination. I couldn't have imagined. no, no way. I had or have the DISEASE that causes CFS. It was a sudden and severe onset in my central nervous system. You can’t imagine what it’s like to lose the very center of your being until you have a shock to your CNS. Six months before, my daughter had the same experience. Both of us now have the after effects of the viral infection that no one can identify. I have a compromised immune system. I once heard this syndrome referred to as HIV-negative AIDS – that’s right on.

My experience was that the many doctors I saw, including the folks at the Great Mayo, just didn’t want to look for anything they didn’t already know about. Even an infectious disease doctor I saw was angered that I would ask for tests – “What test’s! Do you realize how many viruses there are?!” I believe Elaine DeFreitas saw the beast early on but couldn’t get anyone to listen, especially her boss.

I was pretty heartless toward my daughter. I had no idea what she was experiencing. I remember her lying on her bed, arms and legs stiff, fear in her eyes and I just thinking it will pass soon. Jon, may God bless you with a personal understanding like I have. Yeah, it doesn’t kill ya, but a ruined life is worse than most people think it is. Imagination. I couldn’t have imagined. no, no way.

]]> By: Nancy http://blogs.discovermagazine.com/crux/2012/01/12/hiv-in-xmrv-out-how-scientists-deduce-what-does-and-doesnt-cause-a-disease/#comment-443 Nancy Sat, 28 Jan 2012 00:31:00 +0000 http://blogs.discovermagazine.com/crux/?p=819#comment-443 It is important to remember that not everyone with active HIV developed PCP and/or Kaposi's sarcoma. Robert Gallo ( Virus Hunting: AIDS, Cancer,& the Human Retrovirus) points out the tremendous variability of the health issues (which varies with region) caused by HTLV. "... C. Joseph Gibbs, have indicated that the frequency of HTLV neurological disease relative to HTLV leukemia varies according to region." This suggests that genetic factors could predispose an individual to either neurological disease or leukemia. We patients must realize that we are all speculating about this disorder. Only good research will provide the correct answers. It is important to remember that not everyone with active HIV developed PCP and/or Kaposi’s sarcoma. Robert Gallo ( Virus Hunting: AIDS, Cancer,& the Human Retrovirus) points out the tremendous variability of the health issues (which varies with region) caused by HTLV. “… C.
Joseph Gibbs, have indicated that the frequency of HTLV neurological disease relative to HTLV
leukemia varies according to region.” This suggests that genetic factors could predispose an individual to either neurological disease or leukemia.
We patients must realize that we are all speculating about this disorder. Only good research will provide the correct answers.

]]> By: Tc http://blogs.discovermagazine.com/crux/2012/01/12/hiv-in-xmrv-out-how-scientists-deduce-what-does-and-doesnt-cause-a-disease/#comment-442 Tc Fri, 20 Jan 2012 23:37:22 +0000 http://blogs.discovermagazine.com/crux/?p=819#comment-442 the problem with CFS is it is NOT one disease. A majority probably have an autoimmune response after an unresolved viral infection. But there are some people who have chronic malnutrition--which may not be detectable by bloodwork. Some others have undiagnosed and untreated chronic depression, or sleep apnea. Because some individuals refuse to recognize the role proper nutrition and exercise in well being and others do not want to accept they have need of mood regulators, we may never find the origins, cures or acceptance of SFS. the problem with CFS is it is NOT one disease. A majority probably have an autoimmune response after an unresolved viral infection.
But there are some people who have chronic malnutrition–which may not be detectable by bloodwork. Some others have undiagnosed and untreated chronic depression, or sleep apnea. Because some individuals refuse to recognize the role proper nutrition and exercise in well being and others do not want to accept they have need of mood regulators, we may never find the origins, cures or acceptance of SFS.

]]>