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.
1. International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis:
Home page with international conference details, letters requesting funding etc.
2. Two Day Exercise Testing:
Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome
3. PACE Trial:
Tom Kindlon's comment in The Lancet
Pace Trial Recovery Rates: Magical Medicine - comment on Invest in ME website
4. Invest in ME research seeking funding:
Current and Future Research Projects
5. Lipkin's Microbiome Study seeking funding:
The Microbe Discovery Project
Other blog posts on Just ME:
Living Death Disease
Karina's Story - A Modern Tale of Horror
Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome
3. PACE Trial:
Tom Kindlon's comment in The Lancet
Pace Trial Recovery Rates: Magical Medicine - comment on Invest in ME website
4. Invest in ME research seeking funding:
Current and Future Research Projects
5. Lipkin's Microbiome Study seeking funding:
The Microbe Discovery Project
Other blog posts on Just ME:
Living Death Disease
Karina's Story - A Modern Tale of Horror
Image from Wendy Boutilier
