The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale

Discussion in 'General ME/CFS News' started by Waverunner, Nov 23, 2011.

  1. Waverunner

    Waverunner Senior Member

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    A very long article by David Tuller. I just started reading but he seems to have done a great job in writing about CFS, the progress, the science and its perception. Moreover I feel very grateful to Prof. Vincent Racaniello for posting the text on his Virology Blog (www.virology.ws). These are great scientists in my eyes and the article is so up to date that it even reports about the release of Dr Mikovits against bail today.

    http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/

    In the early 1990s, Mary Schweitzer, a history professor at Villanova University near Philadelphia, suffered through successive bouts of sicknessmononucleosis associated with Epstein-Barr virus, a stomach parasite, repeated episodes of bronchitis. One day, while reviewing student exams in her office, she slumped over and blacked out. Not long after, she received a diagnosis of chronic fatigue syndrome.

    In written testimony to a federal advisory committee a few years ago, Dr. Schweitzer described how disabled she eventually became: On a bad day, I would never get up at all, or would lie in bed curled up under the coversI experienced pain behind my eyes and in the back of my neck. It felt as if somebody had hit me in the back of the head with a baseball bat, and someone else was trying to unscrew my eyeballs with a pair of pliers.

    Over the years, Dr. Schweitzer has tested positive for multiple viruses. She experiences severe lapses in memory, concentration and other cognitive skills. She suffers from neurally mediated hypotension, a form of low blood pressure arising from nerve dysfunction, which causes nausea, loss of balance, and fainting. Her muscle and joint pain can be intense, and she frequently requires a wheelchair. Her white blood cell counts have been way off; her immune system is often out of whack. She left her position at Villanova because of disability and has been unable to work most of the years since.

    Like others with chronic fatigue syndrome, Dr. Schweitzer is used to having her illness ignored, mocked or treated as a manifestation of trauma, depression or hypochondrianot only by doctors, colleagues and strangers but by friends, family members and federal researchers, too. So when the U.S. Centers for Disease Control and Prevention reported last year that people with chronic fatigue syndrome are more likely to suffer from maladaptive personality featuresin particular from higher scores on neuroticism and higher rates of paranoid, schizoid, avoidant, obsessive-compulsive and depressive personality disordersDr. Schweitzer dismissed the research as incredibly stupid but not surprising. In another recent study, the CDC had reportedalso incredibly stupidly, from Dr. Schweitzers perspectivethat childhood trauma, such as sexual or emotional abuse, was a an important risk factor for the illness...

    ...(In the meantime, in a bizarre and unsettling turn of events, the senior author of the original XMRV paper, Dr. Judy Mikovits, is engaged in a fierce legal battle with her former employer, the Whittemore Peterson Institute for Neuro-Immune Disease, at the University of Nevada in Reno. The institute sponsored the XMRV research but has accused Dr. Mikovits, its erstwhile star scientist, of stealing laboratory notebooks and other materialsa charge she has denied. Public feuding between the institute and Dr. Mikovits ratcheted up as the hypothesis they jointly championed appeared to be falling apart. The institute filed a lawsuit against her earlier this month; she has also apparently been charged with possession of stolen property, according to a news update in Science. Last Friday, Dr. Mikovits was arrested in California as a fugitive from justice and spent the weekend in jail; she was released on bail after a hearing on Tuesday.)...

    Please continue at http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/
     
  2. Esther12

    Esther12 Senior Member

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    wow. Marked for later reading. Thanks.
     
  3. Ember

    Ember Senior Member

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    Dr. Unger's comment about how advocates remain divided concerning both the name ME and whether or not ME and CFS are different entities saddens me.

    We are planning to collect standardized data on all the domains of illness included in the Canadian Consensus Criteria of CFS/ME, the 1994 CFS definition and the newly proposed International ME definition, she wrote. We anticipate that this data will assist researchers and clinicians in considering further refinements of the case definition. With regards to the name of the illness, she wrote: Opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities. However, we are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward.

    Many advocacy groups have been hanging back, apparently waiting for others to influence opinion, while readings of the ME-ICC that rely heavily, and in my opinion superficially, on the first sentence of the document escape adequate critique.

    We've had the ME-ICC for four months now. If Scotland's move in using the CCC to separate ME from CFS is a good one, why has there been so little discussion among patient groups of using the ME-ICC to do the same internationally?
     
  4. Firestormm

    Firestormm Guest

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    I agree Waverunner. I have only begun reading more thoroughly after an initial scan through, but it seems a very competent piece. It is reassuring to see Prof Racaniello and Mr Tuller commit such support in this manner. Presumably it underlines the role that the Professor has taken as part of the Scientific Advisory Board with CFIDS Assoc America?
     
  5. Levi

    Levi Senior Member

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    I liked the article and give it high marks. Nice discussion of the funding misappropriation issues with the CDC, its recent transition in leadership, and CDC website fine points. Very detailed, and maintains professional objectivity although it is somewhat slanted in favor of patients rather then the extreme skeptics. That is OK, the skeptics have had a good week. I was particularly impressed with the analysis and discussion of patient subsets, which reveal an in depth understanding of the subtleties and conundrums of researching a disease that relies on patient self-reporting exclusively for diagnosis.

    Thank you Mr. Tuller!
     
  6. oceanblue

    oceanblue Guest

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    Case definition

    Yes, a very good article.

    I was encouraged by this statement from Elizabeth Unger:
    First, it shows the CDC engaging with case definitions created collaboratively by so many experienced ME/CFS cliniciand and researchers. I don't think that would have happened under Bill Reeves.

    Second, I think it's a fine idea to bring some data to bear on the issue of case definition. As she wrote:
     
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  7. Dolphin

    Dolphin Senior Member

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    I hope this article will be widely read. (It is long, unfortunately, so some might give up, but I think his style makes it less effort to read than if it was done by many others).
     
  8. taniaaust1

    taniaaust1

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    ??? does this mean that they probably will end up after their study doing YET ANOTHER ME/CFS defintion in which they throw both of these different groups together?

    It is the CDC which has helped hold the scientific community back, (I know my own doctor looked up CFS on their site and got his opinions from there and Im in Australia!). The CDC should be the ones helping to correct to issues and take things forward to where they shold be (eg separate ME from CFS) instead of sitting back and just "following discussions with interest" when they are responsible for much of the medical opinion out there.

    Take responsibly CDC for what you have created with the merging of a known illnesses with a new one created.
     
  9. Battery Muncher

    Battery Muncher Senior Member

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    Thank you for posting this, Waverunner. I can't read very well right now. But a skimming over it, it looks a very informative and balanced (smpathetic, even) article. Very grateful to David Tuller for this excellently researched article on a much read blog... must thank him later.
     

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