“I’m not crazy!”

…she shouted as she gripped the knife.

Chronic fatigue syndrome researchers face death threats from militants:

“For more than 20 years, scientists have struggled to find the cause [of Chronic fatigue syndrome], with some pointing to physiological reasons, in particular viral infections, while others have argued that psychological problems are involved. It is the latter group that has become the subject of extremists’ attacks. The antagonists hate any suggestion of a psychological component and insist it is due to external causes, in particular viruses.”

A published study set them off:

“It suggested that a psychological technique known as cognitive behavioural therapy could help some sufferers. This produced furious attacks on the scientists involved, including Michael Sharpe, professor of psychological medicine at Oxford University. He had already been stalked by one woman who was subsequently found to be carrying a knife at one of his lectures.”

I know nothing about chronic fatigue syndrome and no more about about medicine than I pick up hearing friends complain of their ailments. But I have a web log, so my guess is chronic fatigue syndrome will turn out to be multiple things with different causes. I don’t doubt some chronic fatigue is caused by an external agent – virus, bacteria, or another of those tiny invisible animals scientists claim to see. It also seems likely that some crazy people would have symptoms of chronic fatigue. What’s surprising is how much energy some sufferers display.

“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. Another scientist had to abandon a collaboration with American doctors after being told she risked being shot, while another was punched in the street. All said they had received death threats and vitriolic abuse.”

Being able to identify a medical researcher out walking, and then punch him, suggests a certain level of initiative, focus, and activity. Maybe fatigue isn’t the sufferer’s most pressing problem.

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7 Replies to ““I’m not crazy!””

  1. The Guardian piece is a biased and distorted article that offers a complete lack of any critical analysis and accepts the premise unquestioningly. It involves an extremely complex situation that is not easily explained. However, I would suggest–if not request–digging just a bit deeper before rendering a judgment. I can provide links–and not to conspiracy sites or blogs with little credibility–if you would like. But I would ask you to examine one aspect of this story before any other: the political bias of the Guardian, and one of those quoted in the piece.

    It strikes me that most anything that comes from the MSM that betrays to any level an agenda is thought of as unreliable. The politics of the Guardian should be at least considered in this context. Beyond that, Fiona Fox of the Science Media Centre is a former member of the Revolutionary Communist Party.

    A lot of people have weighed in this, seemingly informed only by the headline. It is mind-boggling to me that the critical eye that would be applied to most anything else coming from such a source, and interviewing people who used to write for something called Living Marxism, would accept it at face value. But, hey–everyone knows Chronic Fatigue Syndrome is…well, they seem to know a lot about it, or else they wouldn’t have commented so freely. Right?

    I will say that they know little about it, or Simon Wessely, or Fiona Fox, or the Science Media Centre, or how this all relates to how CFS is studied and treated in the UK by the socialized NHS, how the guidelines issued by the National Institute for Clinical Excellence affect how physicians view the condition. On more than one site, I have written similar comments, earlier in the week, but this was met with either indifference or outright hostility. Maybe that’s because I didn’t condemn the reported death threats, or the idea that someone would do such a thing? Except I did. Mind you, I am somewhat skeptical of the entire premise, but, really, who isn’t going to condemn such unthinkable, disgusting, dangerous nonsense? Nevertheless, even if this did happen–let’s assume it did–there’s more to this, so much more. There’s a stinking, rotting corpse that the Guardian piece doesn’t even hint at, since it is, I respectfully suggest, straight-up medical/social propaganda. It seems almost nobody is willing to even ask whether the reporter should have asked any questions that might have pointed the piece in a different (read: more balanced) direction. Perhaps this is because the idea of ‘just asking questions’ has become a rhetorical canard of sorts; but this is a far cry from such repulsive garbage as Holocaust denial, or 9/11 “Truth,” or some other such poison.

    As I said, I can supply links, to credible sources, upon request. All I ask is that anyone reading this take another look at the article and ask yourself if such a one-sided piece coming from the source it comes from might not necessarily represent a clear, accurate take on a situation that is now framed by the idea that ‘militants’ issuing death threats is all you have to know when it comes to research into a condition such as this…which nobody really cares about anyway.

    Thank you.

    1. Certainly the Guardian is way left, but I’m not sure there’s a liberal/conservative dichotomy here. Also notice what I said – “…my guess is chronic fatigue syndrome will turn out to be multiple things with different causes. I don’t doubt some chronic fatigue is caused by an external agent – virus, bacteria, or another of those tiny invisible animals scientists claim to see. It also seems likely that some crazy people would have symptoms of chronic fatigue.” That seems pretty reasonable to me, and I stand by it (except the part about the tiny invisible animals, which is humor.)

      Please do post two or three of the most reliable sources you have for your views. The spam filter may stop them initially, but later today and tomorrow I’ll take a look. If you get carried away with links, I reserve the right to edit. Thanks for commenting.

  2. Well, of course, there shouldn’t be a right/left dichotomy. I felt it necessary to raise that issue on the basis of the list of right-leaning blogs I have seen who posted on this piece without applying one iota of the scrutiny they would (I trust I don’t have to provide examples?) on any topic they care about just a whit more than CFS, when you consider the source. I did not challenge the statement you quoted.

    This response is going to be long. I wish it wasn’t, wish there was a way I could reduce this to a reasonable length. The issues involve prevent me personally from being able to edit in the fashion I would prefer. But this is such a complicated, and under-recognized issue, that I can’t see any other way to go about this. So I apologize in advance, and if you are one who won’t consider something like this on the basis of “tl;dr” or some such, I would simply say that this would be unfortunate.

    CFS is based on a disease named Myalgic Encephalomyelitis. That refers to a finding that cannot easily be detected; as such, those who don’t agree that the term has any relevance point to the dearth of evidence that it’s an appropriate name for the condition. It has been found, however, in patients who have died. But one can’t really die of CFS, because anything that it might produce that would actually kill people would be a condition that is exclusionary for a CFS diagnosis. So if you have CFS, and all of a sudden come down with a rare cancer such as mantle cell lymphoma…you don’t have CFS anymore.

    The funding that produces the sort of research where one would be able to reliably point to this…doesn’t exist. In fact, CFS gets about $5 million a year from the NIH. However, the NIH’s Dennis Mangan would likely be able to speak to that. And I only raise it, an allegation I cannot reliably substantiate, to attempt to point out that there is a black cloud that hovers over this condition, what it is and what it isn’t, what it might be, and how it’s been handled.

    What it is, in my view, is a disease most accurately characterized as one involving severe neurological and immunological dysfunction. The CDC’s definition of CFS, which relies more on subjective symptoms such as pain, headaches, sore throats, etc., vs. that which can be objectively observed in a clinical setting, says otherwise. So does the one commonly used in the UK–the Oxford definition. Simon Wessely is a co-author of the Oxford Criteria, although he is also a co-author of the 1994 CDC Fukuda Criteria. The Fukuda Criteria is the most-used research criteria. It is at odds with numerous criteria going back decades that attempt to define Myalgic Encephalomyelitis as a neurological, immunological, and endocrine systems disease. But it is the one you will find on the CDC website. The CDC does not recognize Myalgic Encephaloyelitis. Nor do they publish research using the Fukuda Criteria anymore; instead, they use a cohort defined by their more recent Empiric Criteria, although they do not display this on their website for CFS.

    I am refraining from linking to relevant pages on this particular area, as you asked for two or three to support my assertions. I began with this for the sake of context; again, apologies, and a thanks in advance for indulging me on this.

    Although looser criteria such as Oxford include higher percentages relative to prevalence (say 2.5% vs. .4% who have the disease I know and live), ME as defined by the stricter criteria is an extremely serious, debilitating, physical disease. I say physical because in attempts to point out that this is not a psychiatric disease, patients and advocates are sometimes not as careful with their words and terms as they should be, which results in critics charging that they are perpetuating the stigma faced by those suffering from psychiatric disorders. However, I could care less if it WERE psychiatric. In that case, treatments might be effective! Instead, we see paper after paper published with a psychiatric bent, in a field where such research is more readily funded than research attempting to demonstrate physical aspects of this disease. As to the seriousness, in 2009, Dr. Nancy Klimas offered this response to a question posed about a potential retroviral link that was published not long before:

    “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.”

    6th question down:

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

    The Oxford Criteria were published in 1991.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/pdf/jrsocmed00127-0072.pdf

    A stricter definition called the Canadian Consensus Criteria was published 8 years ago. These were updated and published a few weeks ago.

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

    Please compare these. And take into consideration what a co-author of the Oxford Criteria–undertaken as a response to the initial 1988 CDC Holmes Criteria, which was abandoned 6 years later for the looser Fukuda Criteria (although Fukuda is not as loose as the Oxford Criteria) has said of them, as a matter of clarification:

    “British Investigators have put forward an alternative, less strict, operational definition which is essentially chronic (6 months or more) severe disabling fatigue in the absence of neurological signs with myalgia, psychiatric symptoms and previous viral infections as common associated features.”

    That quote is from Anthony David, colleague of Simon Wessely and co-author of the Oxford Criteria, and is available, I believe, at this link, behind the paywall:

    http://bmb.oxfordjournals.org/content/47/4/966.abstract

    I have a list of scientific papers that describe objectively measured biological abnormalities in CFS. I have links easily available to all of them, but I will refrain from adding them to this post. I would suggest, however, taking a look at Simon Wessely’s publications. A simple search in PubMed using his name and “Chronic Fatigue Syndrome” as search terms will provide a pretty clear picture of his view of this illness.

    Suffice it to say that, in spite of the indefensible nature of death threats, and taking into consideration that Professor Wessely is very careful to always issue the qualifier that he does not believe this illness to be purely a matter of psychological or psychiatric issues…the papers that are easily accessible in the medical literature paint a very different picture.

    22 out of 23 abnormal responses on a tilt-table test, demonstrating the presence of Neurally Mediated Hypotension and/or Postural Orthostatic Tachycardia Syndrome. Unique proteins in spinal fluid. Seven genomic subtypes in a CFS cohort. Impaired cardiovascular response to standing. Loss of ability to recover from acidosis upon repeat exercise.

    Wait…what?

    Exercise is bad?

    No.

    And it is widely known that exercise is a very good thing for those suffering from depression. Right?

    These lazy, malingering hypochondriacs just don’t want to get out of bed! As a matter of fact, the PACE trial was published just this past winter in the Lancet. It demonstrates that both graded exercise and Cognitive Behavioral Therapy are safe and effective treatments for CFS.

    As a matter of fact, it is a consensus in medical science that these are the only evidence-based treatments for this condition.

    Now, I know you didn’t say any of the things that I just employed as rhetorical devices to get a point across. But it is helpful to understand that underlying the views of Wessely and his colleagues is an opinion that CFS is a matter of ‘abnormal illness beliefs.’ They take great care to not bring this into a realm where it would be apparent that this is a view that holds that CFS is psychosomatic. That is something that can be validly charged of Peter Manu and Edward Shorter and Elaine Showalter–but not Wessely. But I say that’s what drives the theories behind his research, if not his personal view (if we are to accept at face value his claims that he does not dispute a physical aspect in this disease).

    Such theories are easier to work with when researchers select cohorts based on looser criteria. There are papers, and reviews, that point to looser criteria allowing in people suffering from fatigue as a byproduct of clinical depression. This would of course result in research ‘proving’ that exercise is helpful. Never mind that the original protocol for the PACE trial, published four years ago in Biomed Central, offers a conflict with the eventual published paper.

    Wait…is anyone inclined to ask any questions about this?

    Recently, one reporter actually did just that.

    The researchers on the PACE trial were moved enough by this to respond. But I have to believe they would not have done so had they anticipated what the reporter would offer as a rebuttal:

    Now, there’s a whole lot of other speculation on this I won’t engage in, and I certainly won’t go into any of the pointed opinions as to why there might be a motive to steer research towards psychological theories and treatments, and away from physical considerations. That’s conspiracy theory stuff, as they say, and although some would say that doesn’t make it untrue, I’ll steer clear and allow whoever is reading this to draw their own conclusions–which, in most cases, is invariably informed by the long-standing knowledge that…CFS is, um, well, ah…hey, you indicated that you believe otherwise, so I’ll leave that thought there. That would be taking a step I don’t want to take into conspiracy theory.

    Pointing out that it’s at least politically disingenuous to accept this from the Guardian and the likes of Fiona Fox and Simon Wessely at face value, in my view, does not take that step.

    We had our own Simon Wessely in this country; his name was Stephen Straus. He convinced everyone at the NIH that this wasn’t a real disease, and his colleagues took that ball and ran with it. Take a look at the research the CDC has been doing on “CFS,” using their cohorts defined by loose criteria that no other researchers use, using that criteria even though they don’t even post it on their website. Take a look at the relationship with the psychiatry department at Emory University, which just happens to be literally next door to the CDC, and where they view CFS as a functional somatic syndrome.

    Or, don’t. I know this is a lot. I’m well aware. And I know how it reads. I know this produces rolling eyes, scoffing, snorting. But I do my best to stick to reliable sourcing. There’s not a lot. But the Guardian piece was a vile distortion riddled with lies, and nobody has questioned its veracity, or that the reporter did not document one critical inquiry. Would an investigative reporter seriously not have thought to interview even one patient or advocate?

  3. Given that it’s GB, I’m going to guess that there’s some difference in benefits if CFS is classified as mainly physiological instead of psychological. That would mean the response of the folks is rational…sort of….

    I sadly find a lot of the “Wow! Those guys are crazy!” type stories boil down to perfectly rational responses that are just connected to the story! Like how the reported number of endangered animals will go way, way down when they’re listed…because when they were just rare, you didn’t lose your land and livelihood if you told someone they were there to help with the recovery. (Which leads to “defenders” nosing around trying to find animals, which leads to landowners destroying any possible habitat in self defense.)

  4. Simon Wessely, March 2010:

    We’re not going to go on doing more and more tests to find what was the virus, because frankly even if we found it there’s nothing we’re going to do about it, we’re in the business of rehabilitation.”

    http://podcasts.bmj DOT com/bmj/2010/03/05/chronic-fatigue-syndrome/

    Simon Wessely, June 2011:

    “I have moved my research interests to studies of Gulf war syndrome and other conditions linked to war zones,” he said. “That has taken me to Iraq and Afghanistan where quite frankly I feel a lot safer – and I don’t mean that as a joke.”

    http://www.guardian DOT co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis

    (that’s the article you referenced in the post itself; but that quote was taken from a piece in the British Medical Journal this past June which I could provide a link for if you like)

    Simon Wessely, August 2011

    “It’s time to stop separating psychiatry and neurology”

    http://www.spectator DOT co.uk/essays/all/7190703/mind-the-gap.thtml

    Again, the Guardian piece did not reveal that Professor Wessely’s professional interests and statements can provide something resembling insight into his approach to psychiatry in general, and Myalgic Encephalomyelitis in particular. Is the idea to merge psychiatry and neurology considered reasonable? I’ve never heard of such a thing. I wonder if that’s a common desire amongst the medical establishment.

  5. There may be some perverse incentive distorting the treatment or research, or it could be just a good-faith disagreement about research priorities. Today it seems psychiatric maladies are losing (as they should) the stigma they used to have, and are as aggressively treated as anything else – maybe more aggressively. In this case, I don’t clearly understand what’s being alleged about the Chronic Fatigue researchers, and I’m afraid the medical issues are too far beyond my understanding for me to sort that out. I’m happy to have your reply and links, so readers can take it up if they choose. Wikipedia’s article on Chronic fatigue syndrome might be a good place to start.

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