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Thank you @kacheston. I think it's an excellent article. I understand you were forced to use the terminology of enduring symptoms by the commission of the article, which is a pity but I don't think is too much of a problem in the case of ME/CFS as you made it clear when the cases you referred...

There are several threads about research and hypotheses about the glymphatic system and ME/CFS. This recent one specifically refers to ME/CFS. Hypothesis Glymphatic System Dysregulation as a Key Contributor to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Nemat-Gorgani et al

The hypothesis is written by an independent researcher mainly writing about his daughter's experience, and building hypotheses on hypotheses and maybes with very little if any solid evidence of any of it as far as I can see. I sympathise with the wish to help a sick daughter, and wish them well.

Very good, Andy. A nice clear succinct statement which I agree with. I suggest if anyone wants to argue for one name or another, they go to this thread: The use of the labels ME, CFS, ME/CFS

That would surely have massively increased costs and reduced numbers willing and able to participate. Sometimes it's only feasible to do one thing, and to do it very well as DecodeME did. I'm glad you are able to increase the range of samples you collect.

This is very confusing. Are we pond life, or are we victims of gaslighting? I was so pleased to read the article in Pulse that at last tells the truth about the whole psychobehavioural nonsense pushed in ME/CFS, Long Covid, FM and pain clinics in the UK. The emperor has no clothes and...

I have just been reading through some of the news items on the MEA website from their health and social care team. I have looked at it before. They have been busy with a pilot project and several visits to different integrated care board areas to give talks and hold meetings. All very busy, but...

I think many, if not all, of us with long term experience of ME/CFS have been through phases of experimenting with everything we hear about that might help. I tried some ridiculous things. Some of us then decided to take a break from forcing ourselves through yet another unevidenced treatment...

The trouble is the NICE guideline only got us halfway by banning GET of a particular sort. It then took a big step backwards by including all sorts of unevidenced activities for various therapists to use to justify their continued programs with a few tweaks - CBT, exercise programs for those who...

I would never judge anyone trying a treatment. We're all desperate to get better. My problem is doctors and therapists who go on prescribing the same treatments for years without any clinical trial evidence or even doing any systematic follow up of their patients. I am also critical of people...

We need specialist services in the sense of ME/CFS being part of a hospital based specialist department, probably rheumatology, since psychiatry, neurology and rehabilitation medicine have all made a pigs ear of it by deciding ME/CFS is a psychobehavioural problem and requiring rehab clinics run...

I got sick in 1989. I was diagnosed by a GP. She had no advice for me, and other GP's just said try to exercise more, and signed me off sick for a week or two when I was struggling with part time work. I was most helped by a couple of books that gave good advice on pacing and got the MEA...

That's useful information. I can't access the Pulse article.

Are they really saying ten minutes with a virtual pet changed their scores on symptom questionnaires? If that's the case, rather than concluding that virtual pets are a useful treatment, surely it shows that questionnaire scores are highly unreliable, being able to be influenced in ten minutes...

I think there are specific roles that could be done by a physio (preventing contractures, retaining joint mobility in bedridden), OT's assessing and supplying aids and adaptations, counsellor - help with coping, distress. But these are not the specific roles offered by these specialisms in NHS...

My friends who had, and died of Parkinsons' disease and motor neuron disease were more able bodied than me until they weren't and became totally incapacitated and then died. I don't think it's helpful to compare degrees of disability between diseases.

They are more than that. Have you read their publicly available documents. They are dire, with a supposedly scientific model based on outdated, small and poor quality research that goes far beyond even what that research claims as the basis for their guideance for therapists which recommends...

I have no idea how difficult or expensive the test is, but boasting of a study being 'a multi-site large-scale investigation' when they only tested 36 pwME in 2 labs seems somewhat overblown.

Is only the abstract available. I'll wait to see how much overlap there is between pwME and health controls before I get interested. They are claiming it's a biomarker, which to me implies clear separation between groups.

Which bit of it needs to be widely known? The MEA funding questionnaires designed to prop up NHS clinics, the MEA supporting NHS clinics run on BACME lines, the questionnares being designed more to enable clinics to claim cost effectiveness rather than to genuinely help pwME? They would...