Underuse of Pharmacologic Therapies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Before Specialist Evaluation, 2026, Grach et al

Hutan said:
That's the thing. People actually have spent money on blinded CoQ10 trials and some of those trials are okay in other respects too. We have a decent amount of decent evidence for that supplement, but it has been ignored in this paper.
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I have clearly missed that.
I am being a bit kinder to Mayo who pre covid treated me/cfs as a conversion disorder or central sensitisation treated with cbt / get. I think everything you have to say is correct and would never go to a hospital like that now that I am in a position to be informed but they clearly moved on from damaging patients with me/CFS to baseless medical treatment.
 
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Holinger said:
I am being a bit kinder to Mayo who pre covid treated me/cfs as a conversion disorder or central sensitisation treated with cbt / get.
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I'm pretty sure that there are still Mayo clinics where your ME/CFS symptoms would be treated as a functional neurological disorder and you would be given CBT and GET.

See for example the website for a Mayo pediatric clinic for functional neurological disorders including 'autonomic issues' (excerpts below). I think we have a thread on a Mayo adult clinic that seems to be targeting employers and medical insurers who want to deal with chronically ill employees. That's the thing - if you don't require good evidence when deciding on appropriate treatment regimes, then you can pretty much do whatever takes your fancy. There's something for everyone (with medical insurance).

An important part of treating FND is communicating that FND is real — it's not "in a patient's head" and patients are not "faking it." This acknowledges that symptoms are involuntary and distressing and provides hope that FND is a treatable condition. Education about risk factors such as stress or trauma, which can be physical or mental, coexisting mental health disorders, and recent illnesses are important for patients and their families. Reducing medicalization and guiding patients and their families to supportive integrative care can help them understand that recovery is possible and may look different from the treatment they have received. The focus shifts to retraining the brain and the body through integration of psychological principles and therapies to redirect symptom-focused attention to the promotion of functional recovery.
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"Functional neurologic disorder is a real and treatable condition. Our goal is to help patients and families understand that symptoms are involuntary and distressing — and recovery is possible. Through a multidisciplinary approach that integrates physical, occupational and recreational therapy, psychology, and education, we focus on retraining the brain and body to restore function and improve quality of life," says Amy E. Rabatin, M.D., a pediatric physiatrist at Mayo Clinic Children's.
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Cognitive behavioral therapy (CBT) is foundational to FND recovery and can include concepts of relaxation, distraction, reframing, and identifying and managing stress as well as the use of strategies to recognize and mitigate symptom exacerbation. Referral to occupational therapy, physical therapy or speech therapy depends on the FND symptoms.
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So, yes, very good that these particular Mayo clinicians aren't pushing a psychosomatic rehab paradigm. But, 'not doing that' is a very low bar in terms of expectations of a world leading hospital.

Holinger said:
they clearly moved on from damaging patients with me/CFS to baseless medical treatment.
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Ha, yes.

I guess the concern is that the baseless medical treatment can also damage patients in various ways, not least by distracting people for years from the urgent need for actual treatments.
 
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Hutan said:
Ha, yes.

I guess the concern is that the baseless medical treatment can also damage patients in various ways, not least by distracting people for years from the urgent need for actual treatments.
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If you read (which you would have) some of the ways some Fibromyalgia patients have been funnelled into a $60,000 central sensitisation course with a Dr of psychology ( it is a catastrophisation course) it is truely horrific. That sort of stuff kills people. That is what the bar was before. I am only hoping that shit is still not going on with Me/CFS. The whole thing is a very low bar. Not disputing that.
 
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Hutan said:
It is important also to note that it is true across medical conditions in general (autoimmune diseases, neurologic diseases, cardiovascular diseases, and so on) that there is no one-size fits all therapies, that a portion may benefit and a portion may have side effects.
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This is a misrepresentation of the fact that shows a deep lack of understanding of the problem.

For conditions like autoimmune and cardiac diseases we have reliable trial based evidence of benefit for a population of patients that is mediated by some, but not others, improving. It is therefore legitimate to take clinical evidence of improvement in an individual case as evidence of a response to treatment. Nothing of this sort applies in ME/CFS. It is time that physicians and advocates got this basic concept clear. Not getting it clear will do a huge amount of harm in terms of unwanted effects of drugs and delay in getting trials done.

Doing good drug trials is not difficult. The main reason they are not done is that nobody really believes the drugs work. If they did they would do the trials tomorrow. The proof is that the UK delivery plan working group could think of nothing except naltrexone to be worth trying and that was mostly to clear the air because it was so widely recommended.

I have also reason to believe that we have useful negative data on drugs unpublished.
 
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