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I'm perfectly happy to accept that ME is the wrong name, and that it's a syndrome. I would also bin the name CFS as it leads to so much misunderstanding both from our doctors and as an enabler for all the BPS research. What I can't accept is doctors deciding that just because what we suffer...

Copy of tweets Paul Glasziou@PaulGlasziou If posting replies/comments on this paper, to help other thread readers can you please: (a) read the paper (b) say which of the 8 items you (dis)agree with (c) post the link for the evidence. Thanks for your kindness. Sten Helmfrid @StenHelmfrid Dr...

Two and a half million pounds to Rona Moss Morris to develop an online exercise and CBT program for MS. There seems to be complete confidence it will work, since the plan takes them all the way from pilot/feasibility to implementation. And of course the outcome measure is a fatigue questionnaire.

And they are telling UK people they can take part, which from what you say would put their doctors in an illegal position.

I agree with you, but I doubt it works that way in the NHS. We'd need the NICE guideline to recommend them as a key part of management.

How odd. Still there for me. In case it disappears again, it says: The authors of this study are psychiatrists who benefit directly from patients with Chronic Fatigue being labeled mentally ill. The evidence of exercise-induced worsening of CF symptoms is overwhelming and has been widely...

It's striking that both their remission stories are based on taking a whole lot of different things at the same time as well as dietary change, but both attribute the sudden change in their symptoms to the antibiotics for no good reason as far as I can see, especially as I think at least one of...

Someone in the UK has asked if they can apply to take part and the reply is 'yes, for sure'.

It's US based. They are calling it self experiment, and passing medical supervision to whatever doctor each participant can persuade to prescribe the drugs.

I don't understand that. Are they only seeing the very mildest pwME and including people with idiopathic chronic fatigue? So they are all fairly active, but randomly scoring differently on questionnaires for fatigue, depending how they interpret the words on the questionnaire? If they really...

Another tweet from me: HI @remissionbiome , as you know, clinical trials and collection of patient data need ethics approval. Have you checked how you stand legally on holding patient data and if you need insurance to cover if someone dies? Have you published your outcome measures for your trial?

There's also the whole edifice being built in the UK of CBT for every chronic disease, even the ones with clear diagnostic tests. Rona MossMorris and Trudie Chalder are doing trial after trial of CBT for everything chronic, and the whole CBT for MUS edifice is largely based on PACE, as far as I...

I've just realised what this reminds me of.

It is difficult to read. But also very important to bring into the light and have on record. Please don't feel guilty.

A good question. Also how many count themselves as treating ME/CFS who actually just do the diagnosis then pass the patient on to therapists to do the treatment and follow up, so never see the patient again?

Transcript of tweets: Dr.T, PhD I @remissionbiome@chydorina The@remissionbiome n=50 self-experiment is open for application for #mecfs #LongCovid. This experience will be a data lovers dream. 3-6-12 months of all the prep, the acute phase, and the recovery phase with your fellow...

Did they really say this? They really haven't a clue and that's dangerous. You can see why they cling to calling ME/CFS chronic fatigue syndrome. They actually think we are just pleasantly tired and just interpreting that as being ill. It's the same as the BPS people persisting in calling...

Hi Luna, good to hear from you. I hope the Gammacore helps.

Interesting to see a connection between migraine and altered taste and smell.

The parallels with the Lightning Process are increasing - non clinicians promoting and running experiments on vulnerable people that can lead to harm, claims on the basis of very short term improvement in a tiny sample, setting up training programs, getting medics who should know better to...