Sunday 24 August 2014

Guest Post from Anne Keith: Why is deceptive ME research tolerated?

Anne Keith recently made an excellent comment on Facebook in response to this video:


With a few edits for clarity, this what she said:

So very sad.

Myalgic Encephalomyelitis (M.E.) can be extremely devastating yet there is a whole group of psychiatrists who try to dismiss this as an imaginary disease caused by pessimism, over-exaggeration, or activity-avoidance.  Would a teenager really stay in bed for years, allowing herself to be tube-fed, because she is whiny? Have you ever met anyone willing to suffer 50 hospitalizations for fun?  Did this girl decide to die because she was lazy or because she was unbearably sick?

Ridiculous and insulting doesn't begin to cover the off-handed dismissal of such deep suffering.

Early on, a psychiatric explanation was one of many theories which deserved to be explored. That was long ago.  It was shown to be unfounded years ago, when the physical underpinnings of M.E. began to be documented.  Despite a paucity of research funding into the physical causes of M.E., it has now been shown to most likely be an auto-immune disease, often initially triggered by minor viruses.  Numerous physical abnormalities have been found by a wide variety of top-level scientists throughout the world.1

Any claim that this is a psychiatric disease is now driven by three things: egotism, greed, and ignorance.  Members of the "Wesseley School," mostly in Britain, decided early on that M.E. (which they now call Chronic Fatigue Syndrome) must be mental illness even though they had nothing to back up their guesses.  They happened to be in influential places at the right time and they increasingly shaped the perception of this illness.  They are clearly aware of all the physical findings yet they neglect to mention or act on these "inconvenient" facts.  Their self-serving refusal to include these findings is scandalous.

Their flood of misinformation has left both the public and most treating physicians in ignorance.  The truth is that, just as multiple sclerosis is not "faked" (as once claimed by psychiatrists), and as epilepsy is not caused by demons (as "everyone" once knew), so M.E. is not caused by "wrong-thinking" or "activity avoidance."  There are well-known immune abnormalities and a very unique - and dramatically abnormal - response to exercise that can be definitively shown by a 2 day treadmill test.2

It is time for the medical community, and for the public at large, to denounce this group’s disingenuous "research."  Their studies, including the massive ‘PACE’ study in England, intentionally exclude the sickest patients while they include those who merely report "being tired" (that is, who do NOT have the illness' distinguishing symptom of an abnormal response to exertion).3

This group’s studies could be compared to someone claiming to do lung cancer research which excludes those dying of lung tumors while including those who have a "tickle in their throat."  Just as no doctor would accept any study that defined lung cancer as "a cough," so no doctor should accept any M.E. study which defines this illness as "fatigue."  Doctors would denounce the "cough” study’s claim that over-the-counter syrups and cigarettes improved patients’ outcomes.  In the same way, they must denounce "fatigue" studies that claim “right-thinking" about symptoms and/or increased exercise cures M.E.  Patients are being directly harmed by such ego-driven, self-serving "research."

It is just wrong that these people have abundant funding while far better researchers (such as Lipkin, one of the world’s best virologists) are forced to literally beg in order to get basic funding to research this illness.4,5  It is past time to stop funding junk studies and start appropriately funding real research that further explores the physical causes of this catastrophic illness.

What can you do?  Shine a bright light on this scandal.  Share stories like this one as widely as you can.  Help support M.E. advocacy, often done on a shoestring by suffering patients.  Ask your politicians to fund REAL research instead of wasting money on poor studies designed to support psychobabble treatments.  Tell the stories of M.E. patients you know (with their explicit permission, of course) so that they no longer suffer in silence and obscurity. Most of all, speak up when you hear someone say "everyone" knows M.E. is the same as depression, laziness, or normal fatigue - and clearly state it is anything but that.  Help stop the self-serving psychiatrists, who appear determined to further their own interests (science and patients be damned), so that not even one more patient has to experience the living hell that Lynn and her mother suffered.

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Further information:

 1. International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis:
Home page with international conference details, letters requesting funding etc.


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4 comments:

  1. Alex Young aka alex361924 August 2014 at 18:20

    I am in furious agreement with much of this blog. I have written similar blogs on Phoenix Rising. Yet I would like to expand on two points.

    The first is there is not one case of proven psychogenic illness. Nobody doubts thoughts can modify behavior and lead to different disease expression, and hence can potentially improve symptoms. Yet they said the same things about many illness, not just the ones in the blog ... including cancer and particularly breast cancer. In not one instance has their claim ever held up with substantive and undeniable evidence. Not once. If they claim that any disease is psychogenic, that is it does not have a physical cause, then please name the disease, and name the definitive paper that proved it. Name just ONE paper. So far the only paper anyone has put forward to me was a joke, it did not even address the issue.

    The second problem is while I do not doubt some proponents of this view of ME have doubts, its not clear they are not believers. We, as in human beings, have trouble coming to terms with how irrational other people can be, particularly supposedly intelligent people. Yet vast swathes of psychiatric research is highly irrational, fails to conform to minimal scientific methodology, and makes unsubstantiable claims that reference other papers making unsubstantiable claims. Further more they get preferential funding due to financial, ideological or political interests from other sources. So its not clear how much of this is due to deliberate misinformation, and how much is due to systemic stuff-up.

    These stuff-ups go way beyond one minor school in psychiatry, even though that school has massive and undeserving impact on how ME is treated. The medical profession, as a profession and not individuals, has stuffed-up. I have traced CPET back to 1949 and it may be older. Doctors were using it in the 80s. Some did so in the early 90s, including 2 day testing. Yet nothing much was published. It languished until Pacific Fatigue Labs (now Workwell Foundation) published a formal study in 2007. Yet its an obvious tests, doctors are taught it in medical school, every major hospital can do it ... how can an entire profession stuff-up like that?

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  2. Wendy Boutilier24 August 2014 at 23:39

    Thank you for writing this blog.

    ReplyDelete
  3. Anonymous25 August 2014 at 17:18

    The UK psych school could not have succeeded without fundamental corruption and disfunction within the U.S. government's CDC and NIH.

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