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ME/CFS: Under the Hood ME/CFS: Behind the Science (or Research)

So they prefer uncritical analysis? If (if) they really are interested in finding the weaknesses in their hypothesis and experimental methodology, and getting the right (or at least better) answers, then the best people to find it are their critics, who will also usually do it for free.

Not just the money, though that is a big one. Being one who 'recovered' can bring a kind of calling, of being special, a leader chosen to help the lesser mortals. Only a short step from there to the unshakeable certainty of fanaticism.

I think this is important. Exertion, of any form, certainly is a consistent trigger/exacerbator of PEM for me. But it can also happen without any exertion in the previous few days (beyond minimal self-care and life admin stuff). The so called 'baseline' for me, to the extent it exists, is...

In fairness, you only posted that a week ago, and it is a very complex and weighty problem to address, that is never going to be easy nor quick to deal with. You are free to lead from the front on this.

Especially when those patients are informed, cogent, and have no incentive to compromise for the sake of career prospects, etc.

NICE 2021, and everything else, may well have not happened for all the difference it is making in the NHS. They just don't care, and are clearly going to hand us straight back to the psychosomatic club. It could not be more obvious. :grumpy:

Despite there being not a shred of hard evidence for any of it. :grumpy:

Multidisciplinary interventions, such as graduated exercise therapy with the Modified CHOP POTS protocol,11 incorporating pacing after energy expenditures, cognitive behavioral therapy, and neuromodulation, alongside dietary and nutraceutical interventions, have all shown promise in managing...

They are still playing the underdog card, I see. And it started so promisingly too. This is obviously the latest tactic. Sound so sympathetic and understanding about the patient's dilemma and medical trauma, then hit them with the same old toxic shit they have always foisted upon us. Sorry...

As Susan Sontag said (in Illness as Metaphor): Theories that diseases are caused by mental states and can be cured by willpower are always an index of how much is not understood about the physical terrain of a disease. Maybe do a video styled after the one by Chalder and Gerrada, but telling...

Not successfully, if the likes of Sir Simon have any influence over the outcome.

Endlessly. Repetition being one of the critical components of successful propaganda.

Possibly also that they want confirmed persistent cases, which might help weed out ME/CFS misdiagnoses that were actually other conditions that resolved in the short-med term?

Thanks for this. :thumbsup:

I am guessing that should be minority.

Oops, missed that bit. :oops:

There is evidence of perturbed microbial and host processes in the gastrointestinal tract of individuals with functional gastrointestinal disorders (FGID) compared to healthy controls. So when you will stop calling them functional disorders?

Lack of support leads to poorer health and increased social costs. So start offering meaningful support (including long-term research funding), not this infantilising psycho-behavioural fluff that could be written on a single page in large font and posted to every citizen for virtually no cost.

That is appalling. Besides being wrong overall, it places the responsibility for success and blame for failure right back on the patient. They are never going to give up their rehab and recovery framing, nor take any blame for it not working. Mostly by getting out of the way. Don't rule out...