Latest on Long Covid and ME/CFIDS Research

Rufous McKinney

Rufous McKinney

Senior Member
Messages
13,681
andyguitar said:
the news about HBOT.
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I read that, then read Cort's article about HBOT (skimmed is more like it)

A procedure/mechanism exists to at least help POTSy long covid folks. Yet it is almost a given that nobody will cover that or pay for that. (HBOT).

Why are treatments for us, so especially restricted and never available?

Cort talks about a sick person who got improved paying for tons of HBOT treatments. After visiting twenty doctors and getting numerous freaky diagnoses.

The rest of us get asked why are we bothering these doctors? - they have more important things to do.
 
southwestforests

southwestforests

Senior Member
Messages
1,033
Location
Missouri
belize44 said:
It is a damned shame that we are not taken seriously by health care professionals, even now.
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That brings to mind my Dad, who in 1985 was the US Navy's first medical retirement with ME/CFS and fibromyalgia. Back then he asked directly if what was happening to him was psychological & the military doctors told him, no, it is documentably physical, it is not psychological,

(EDIT: after talking to Dad again, it wasn't just 'doctors' who told him that, It Was A Psychiatrist)

and yet,
here 40 years later,
FORTY YEARS LATER!
there is need to publish
things like

https://www.healthrising.org/blog/2019/11/11/somatization-myth-chronic-fatigue-syndrome/

Ending the Somatization Myth in ME/CFS (or “Who’s the Deluded One Now”?)
by Cort Johnson | Nov 11, 2019 | Fibromyalgia and Pain, Homepage, Psychiatry | 102 comments

...
The first implication to draw from this study is that ME/CFS is not a somatization disorder. Somatization disorders occur when a person believes that what are, in fact, psychiatric symptoms have a physical cause (and goes doctor shopping.)

Given that interpretation, it’s not surprising that the idiopathic or medically unexplained symptoms in ME/CFS have led to a rather rich history of psychiatrists attempting to define ME/CFS as a somatization disorder. The increased rates of depression found in ME/CFS have many times been cited as a reason to regard ME/CFS as one.

Back in 1991, a large study published in the American Medical Journal, which undoubtedly got a lot of attention, asserted that ME/CFS was a somatization disorder. In 1996, Natelson argued that few ME/CFS patients met the strict criteria for somatization disorder and showed that the interpretation one made of the symptoms in ME/CFS (physical vs psychiatric) played a critical role in the diagnosis.

In a very long 1997 review, “Chronic fatigue syndrome: a 20th century illness“, Simon Wessely put ME/CFS with other somatization disorders. A 2007 German study, co-authored by Trudy Chalder, suggested that ME/CFS substantially overlapped with somatization disorder.

Since then, Maes has several times argued for a biological cause to the seemingly “somatic” symptoms found in ME/CFS, and a 2019 study, which assessed “illusory mental health” (people who thought they were mentally well but were not), found no evidence of increased IMH in ME/CFS and concluded that ME/CFS is not a somatization disorder.
Since somatization is by definition a psychiatric disorder masquerading in the patients’ mind as a physical disorder, the presence of a mood disorder should magnify the patients’ symptoms greatly. Natelson et. al. pointed out that studies indicate that mood disorders are “illness multipliers” in somatization disorders; i.e. they make them worse.

But not in ME/CFS. Having a past or present mood disorder didn’t make any of the symptoms associated with ME/CFS worse. (It did, however, make the symptoms associated with mood disorders worse.) Since having a mood disorder didn’t increase any of the symptoms associated with ME/CFS, ME/CFS is, by definition, not a somatization disorder.
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and

https://doctorswith.me/me-cfs-what-psychiatrists-need-to-know/

ME/CFS: What Psychiatrists need to know
21 March 2022
Categories
In 2022, Compliance, Education, Learning Resources and CPD, ME/CFS Guidelines, News, NICE 2021
What is ME/CFS?

ME/CFS is a chronic, complex, multi-system biological illness with often devastating consequences. It affects all age groups including children, and all social classes. About 75% of sufferers are female. It has a worse quality of life score than many other serious illnesses including cancer, stroke, rheumatoid arthritis and MS. 25% of patients are housebound or bedbound. Severely affected patients can struggle to perform ALL activities of daily living, and extreme cases may even need tube feeding. ME/CFS is not psychosomatic, and psychological therapies will not cure the disease.
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Truly, there is evil in the land.
 
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