new blog post by skeptic doc Harriet A. Hall MD: Chronic Fatigue Syndrome and Rituximab

inox · May 20, 2019

Oh, sorry about the very long post - guess I was a bit upset about this... :-/

Subtropical Island · May 20, 2019

Mfairma said: ↑

I dislike "skeptics." While I am generally not supportive of many of the alternative remedies they like to attack, I find skeptics to be arrogant, dismissive, and incurious and, above all, to lack empathy. I don't at all see a desire to advance knowledge in the articles these folk write, but rather a desire to demonstrate superiority and enforce a certain cultural dogma, without regard for nuance.

I first heard of Hall through the first Rituxan article she references in her current article. It's not unreasonable to take the position that patients shouldn't be trying drugs that haven't been approved for their disease, but Hall goes much further, stoking disdain for terribly ill patients, devoting little energy to trying to understand the conditions under which desperately ill patients might jump to spend absurd amounts of money to try risky, untested treatments. The article itself is titled "Jumping the Gun," and all you need to know about what she thinks of patients, at least at the time she wrote the article, is reflected in the first two sentences:

"Now that the XMRV myth has been put to rest, patients with Chronic Fatigue Syndrome (CFS) are no longer jumping the gun to demand anti-retroviral treatments. But they are jumping the gun in new ways, based on very preliminary data coming out of Norway."

Her next article on "CFS" is a mess. Through most of the article, she suggests respect for and agreement with the IOM report and the desire to diagnose "CFS" by definitions more exacting than Fukuda. By the end, however, she switches more overtly to editorial mode and, parroting completely the BPS line, effectively tells us that everything she's just reviewed is a bunch of bullshit:

"Unexplained symptoms are common and frustrating. Doctors have always been puzzled by patients who complained of fatigue and a variety of associated symptoms without any identifiable pathological cause. Today’s CFS patients would once have been diagnosed with neurasthenia, a diagnosis that has been abandoned. “Fad” diagnoses wax and wane in popularity as both patients and doctors strive to give unexplained symptoms a satisfying name.

The same constellation of symptoms might be variously diagnosed by different mainstream and alternative medical providers as CFS, fibromyalgia, chronic Lyme disease, Gulf War syndrome, post-traumatic stress disorder (PTSD), multiple chemical sensitivity, environmental sensitivity, candidiasis, and any number of fake diseases. However the symptoms start, they quickly become complicated by deconditioning. As patients exercise less, they become less able to exercise. Muscles atrophy with disuse, endurance declines. Confirmation bias sets in. The sick role becomes a self-fulfilling prophecy. Whatever the underlying pathology, the degree of suffering is affected by psychological factors. It is devilishly difficult to sort out the physical from the psychological and to know how best to help these sufferers. Current treatments are not very effective." (My bolding).

I've read her current article and the article on PACE and there are other problems with these. I could elaborate, but why bother? From the few articles I've read, she has an angle, one that generally is deferential to the culturally dominant position and dismissive of already marginalized patients, and she has an analysis, which is generally pretty half-baked and incurious.
Click to expand...

Disappointing (that bolded bit). ...very.

Harriet Hall et al (and especially her video series about science based medicine) really helped me fairly early on in my illness.
A year in, I was getting so desperate, everyone was throwing ideas at me, I was determined to be the one who beat this thing etc. Being reminded of science, and of the ability I do have to employ critical thought, really helped me to stop wasting huge amounts of energy (and my credibility) on *&$#@* .... things that never did help.

(To know that a rational response to uncertainty in disease etiology can be to support research, to go easy on myself, to trial and document a few basic principles of good health and see how they went for me (some surprisingly consistently not good) etc.
“Fighting” the disease (technically it’s a syndrome :/?) does not mean taking every remedy people throw at you. It means focusing our efforts on things that will progress our understanding, doing what I can to improve factors I can improve, and knowing that there are quite a few diseases we simply don’t have a handle on yet. The only way to change that is to stop jumping to conclusions - Hysteria, cholera transmitted by miasma, the more you do the more you can do, ... and just look at what we can prove, and try to disprove it. Therein lies proof.

Ironically, the fluge & mella trials mentioned here are a good example of science based medicine. Eliminating something we thought might work. The use of the drug outside of clinical trials is rightly condemned as exploitative or simply jumping the gun)

Sorry, ranting. Have put the excess in brackets to edit later.

Sean · May 20, 2019

Mfairma said: ↑

"Unexplained symptoms are common and frustrating. Doctors have always been puzzled by patients who complained of fatigue and a variety of associated symptoms without any identifiable pathological cause. Today’s CFS patients would once have been diagnosed with neurasthenia, a diagnosis that has been abandoned. “Fad” diagnoses wax and wane in popularity as both patients and doctors strive to give unexplained symptoms a satisfying name.

The same constellation of symptoms might be variously diagnosed by different mainstream and alternative medical providers as CFS, fibromyalgia, chronic Lyme disease, Gulf War syndrome, post-traumatic stress disorder (PTSD), multiple chemical sensitivity, environmental sensitivity, candidiasis, and any number of fake diseases. However the symptoms start, they quickly become complicated by deconditioning. As patients exercise less, they become less able to exercise. Muscles atrophy with disuse, endurance declines. Confirmation bias sets in. The sick role becomes a self-fulfilling prophecy.
Click to expand...

That is also pretty much a straight lift. Could have been written by Wessely himself.

Sean · May 20, 2019

...isn’t it time to look elsewhere?
Click to expand...

Sounds familiar. Let me see... Ah, yes:

The time has come to look elsewhere for effective treatments.

Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
Wilshire et al. BMC Psychology (2018) 6:6

https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3

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new blog post by skeptic doc Harriet A. Hall MD: Chronic Fatigue Syndrome and Rituximab

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new blog post by skeptic doc Harriet A. Hall MD: Chronic Fatigue Syndrome and Rituximab

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