… weary unto death if you ask me, produces one farcical story after another.
Insistent on an organic rather than psychiatric basis for their syndrome, some British CFS people make it a point to harass university researchers who fail to find said organic basis.
Professor [Myra] McClure [,tormented for having eliminated one viral candidate, the XMRV retrovirus,] says she will not be doing any further research in this area, and that may be the single most important consequence of this campaign of abuse and intimidation.
CFS is equally farcical on the other side, among scientists. The chick who claimed the now-discredited XMRV viral basis – she was associated with a lab at the University of Nevada – is now under arrest for “possession of stolen property and unlawfully taking computer data and equipment.”
Because… let’s see here… ach, my muscles ache from trying to piece this Keystone Kops plot together… Okay so like after she published her thing about yes there’s this viral basis the paper was retracted because no one can replicate the thing and people in her lab said the result might have just been “contamination” or maybe outright data manipulation or omg whatever.
So the university institute fired her and she apparently tried to steal all her data so she could take the NIH-sponsored work someplace else. Only NIH doesn’t let you do that, you know … just up and decamp with your shit… Plus bigger problem is that you’re not supposed to steal things.
On 22 November, [Judy] Mikovits posted $100,000 bail after spending four nights in jail in Ventura, California, as a “fugitive”, according to a county-court docket. She is accused of possessing stolen lab notebooks, a computer and other material belonging to the Whittemore Peterson Institute for Neuro-Immune Disease (WPI), a private research centre in Reno, Nevada, where she was research director. Mikovits faces extradition to Nevada, while the WPI is seeking the materials’ return in a separate civil suit.
December 1st, 2011 at 10:34AM
UD,
As someone who works on issues surrounding disease stigma of contested chronic illnesses (i.e., pain, CFS), I am wondering what you mean by stating that a diagnosis of CFS is one “long since weary unto death?”
December 1st, 2011 at 11:28AM
Daniel: CFS – the confluence of symptoms people come to their doctors with that those letters designate – carries no stigma as far as I’m concerned. What I mean is that it seems unlikely this confluence is going to gather itself into a discrete disease. People keep trying – via research and via intimidation – to make CFS a Thing. They will keep trying. But having followed these efforts for years, I think they are going to fail.
December 1st, 2011 at 11:29AM
So long as we have the death threats issue out there & the salacious details about the Mikovits case, there’s no need to raise any questions as to whether there’s anything else that deserves examination; every headline must be true. Feel free to ignore.
http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/
December 1st, 2011 at 11:38AM
Doesn’t matter: I’ve read the article you linked to – it’s an excellent summary of the CFS research story so far, and I encourage my readers to read it.
December 1st, 2011 at 1:57PM
UD,
I imagine you mean by your response that you intend no stigma by your comments, which is of course not the same as asserting that persons who claim to experience symptoms of CFS or who seek a diagnosis of CFS are not stigmatized. The latter is an empirical contention that is false.
As to when and whether CFS will ever be acknowledged as a disease, that obviously depends on a great number of social, political, cultural, and economic factors. Some contested illnesses do make the jump to legitimacy, the most obvious recent example being post-traumatic stress disorder, which most people think earned its legitimacy largely as a result of its prevalence among veterans (and there’s obviously a whole lot to unpack in why and how military status shaped the legitimacy of PTSD).
But I do think it’s generally critical when speaking of stigma to be careful of distinguishing between what an individual utterer’s intention is and what the social reality may be. People who profess the symptoms of CFS are unquestionably stigmatized; whether, if it were to be perceived as a legitimate disease, that stigma would lessen substantially is quite uncertain IMO.
December 1st, 2011 at 2:31PM
Daniel: I’ve never seen evidence of their having been especially stigmatized. I don’t know what you have in mind by saying that there’s empirical evidence that they’re stigmatized. Every illness is stigmatized to some extent. Illnesses inarguably rooted in organic problems are stigmatized.
As to PTSD – That diagnosis also remains controversial.
December 1st, 2011 at 4:07PM
UD,
There is a great deal of such evidence.
Here are some citations:
http://www.ncbi.nlm.nih.gov/pubmed/11837367
http://digitool.library.mcgill.ca/R/?func=dbin-jump-full&object_id=34698&local_base=GEN01-MCG02
http://www.sciencedirect.com/science/article/pii/S0277953602004203
http://www.bmj.com/content/328/7452/1354.abstract
http://www.sciencedirect.com/science/article/pii/S0022399904004477
http://www.sciencedirect.com/science/article/pii/S0738399107002601
There are many others.
These studies document, typically via qualitative methods (which dominate the literature on disease stigma), that people who suffer from symptoms of CFS or who seek diagnoses of CFS report being stigmatized in the classic Goffmanian sense (they are marked out as different and then judged as deviant in some way).
While it may or may not be true to say that every illness is stigmatized to some extent — I am dubious, for I think this idea expands the concept of stigma beyond all reasonable bounds — it is simply false to say that all illnesses expose their sufferers to equal chances of being stigmatized nor expose their sufferers to equal severity of stigma.
Most of what social scientists have termed the family of “contested illnesses” expose the sufferer to a much greater likelihood of being stigmatized more severely than non-contested illnesses.
For the purposes of our discussion, I would also want to note that many, myself included, think that the dichotomy you draw between “organic and inorganic” diseases is extremely problematic, and that the nature of the distinction is in fact related to the unequal distribution of disease stigma among vulnerable groups suffering from contested illnesses.
I don’t mean to threadjack, but I do think it is important to avoid even accidentally contributing to the stigmatization and invalidation of people presenting with symptoms of contested illnesses, even if one has no intention of doing so.
December 2nd, 2011 at 2:23PM
@Margaret Soltan – The World Health Organization ICD-10 lists myalgic encephalomyelitis under Chapter 6 Other diseases of the brain. The chronic fatigue syndrome and post viral fatigue syndrome are under G93.3 in the alphabetical index.
Patients did not determine the classification as a neurological disease – it is based on the biomedical research.
There are over 5,000 research papers in the peer reviewed scientific literature documenting the abnormalities associated with this disease. Clinicians diagnose it based on a pattern of signs and symptoms.
As for researchers behaving badly, only one small group of colleagues say they have received a few death threats. And one of those researchers claims to have stopped research into ME/CFS over ten years ago, but you have only to check databases such as the NIH National Library of Medicine to know that he lied and is an author on 50+ papers during the time he claimed to have not been doing any research.
Researchers lying and researchers behaving badly having nothing to do with whether an disease is a disease or not. There are hundreds of researchers in this area that do none of the above just as the threats of a few patients out of 17 million worldwide doesn’t mean much statistically.
If you are tired of reading about it perhaps you should stop to consider how patients, their families and the clinicians who see them feel. It you aren’t interested in being factually informed then perhaps you would be more comfortable confining you comments to Herbert Cain.
Dr. Nancy Klimas who is a world renowned expert who does both research and is a clinician told the New York Times her ME/CFS patients are sicker than patients with HIV. She said in part: “My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”
The CDC states that patients are sicker than patients with COPD, end stage renal disease and as noted above patients with controlled HIV. The CDC estimates the societal and medical costs to be around $25 billion per year.
While everyone is entitled to their opinion your does not seem to be informed by the scientific literature, factual information regarding disease classification, or having ever known someone with ME and CFS.
December 4th, 2011 at 12:12PM
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