Slogging through the sealed U.K. ME files that have finally been released isn't exactly like combing through Girl with the Dragon Tattoo material. But a few of the many entries--most of which concern disability eligibility--may prove illuminating, despite the
fact that the patronizing author of what may be the most problematic entry is unknown: The
beginning of the letter and signature are missing. The mystery writer
intones, "It is important to avoid anything that suggests that
disability is permanent, progressive or unchanging. Benefits can often
make patients worse."
Next, psychiatrist Simon Wessely penned an enlightening letter, writing to the Department of Social Security on June 10 of 1993 that ME is a psychiatric disease but that its "powerful lobby group" has earned ME a coveted slip in the neurological harbor. Explains Wessely:
Next, psychiatrist Simon Wessely penned an enlightening letter, writing to the Department of Social Security on June 10 of 1993 that ME is a psychiatric disease but that its "powerful lobby group" has earned ME a coveted slip in the neurological harbor. Explains Wessely:
"I regret to say that it seems to me that in order to be fair to the ME Association you have now gone to the other extreme. I am disturbed that this disorder should be listed as a neurological disease. I enclosed an editorial that I had written last year for a neurological journal reviewing the evidence on this subject, and concluding that there was little to point to a neurological origin of symptoms. Since then more research has been published in the leading neurological journals, and nothing has happened to alter those conclusion [sic].
"Instead I feel this decision represents the triumph of an effective lobby over scientific evidence. If CFS/ME is to be listed as a neurological disorder, I for one will begin to campaign via the mental health charities for schizophrenia and manic depression to be also listed under the same heading. Indeed, there is far more evidence suggesting that these disorders have a neurological origin than does CFS/ME.
"I also feel that this decision, if it has been made, reflects an undesirable stigmatisation of psychiatric disorders. The main difference between CFS and the major psychiatric disorders is neither aetiological, nor symptomatic, but the existence of a powerful lobby group that dislikes any association with psychiatry."
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Holy $#@*! That is astounding. What is that guy's problem?
ReplyDeleteAlso it says above that the letter is by Wessley, then says below that the identity of the author is unclear?
Poor Simon, CFS & ME are still, all these years later, listed as neurological by the World Health Org in Geneva. He's been more effective in the US, but ME is still listed as neurological.
ReplyDeleteThis is another reason the New International Consensus Criteria needs to be brought to maximum public, government and private research attention. That criteria defines mecfs as a neuroimmune disorder and lists over 100 references in support of that conclusion, some of which have been available since the 1990s.
ReplyDeleteThese "secret" files simply illustrate what we already knew: Wessely and gang have been trying to politically manipulate the perception of mecfs away from the biomedical evidence and toward a bogus psychosomatic/mental misperception of it.
Who benefits? It's obvious he and his cronies are not trying to benefit those who are debilitated by the illness, but rather he seeks to keep disabled patients from having any access to medical care or testing that would prove the illness is biomedical, and thus from receiving disability benefits.
His behavior is contrary to the oath of Do No Harm. His actions are the bureaucratic equivalant of war crimes.
-Lilly C
Hasn't Wessely fled to Afghanistan to get away from all the "dangerous" ME patients who have been hounding him with the TRUTH? If so, then who has replaced him, and would it be possible to undo the damage done by him?
ReplyDeletedisgusting, and so hurtful! (but thank you for showing us this.) - rivka
ReplyDeleteBe aware that most patients with ME/CFS and related diagnosed has several infection as Lyme and other animalmicrobes making us sick..
ReplyDeleteThe tests is not reliable and many is tested false negative if we are tested at all!
Look into chronic Lyme, The New Great Imitator Disease, Multiple Chronic Infections Disease and specially such infections as Borrelia, Bartonella, Mycoplasma and Clamydia pneumonia, compare whit your symptoms and then contact a Lyme doctor for better testing and treatment!
Forgive my ignorance, but I thought the secret files were ordered to remain secret for many more decades? Have they been released recently? And if so, to whom? Thanks for the info.
ReplyDelete