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Yes this is the problem and it leads to vast waste of money. I don't see why anyone ill with fatigue should benefit from exercise to be honest. I think it is all the same empty hype.

Unless of course, as I have said before, they don't deep in their hearts think that a trial would show any effect. If they did they would do a trial to get their Nobel prize for proving a mechanism in ME/CFS and solving what nobody else can solve. If antihistamines actually helped we would be...

I think it was before the pilot results were out. But for Dara the obvious thing is to support the Norwegians. Any physicians doing a trial on Dara need to have a very good grasp of B cell biology as well as ME/CFS patients. There are none in the UK who fit that, or at least there weren't any in...

I don't buy that. If something only helps one person in five you can still show that with a trial. It is not that uncommon to have trials with a number needed to treat (to get one benefit) is as high as 20. The 'different things help different people' is always trotted out by the BPS people and...

I didn't think Younger was a patient or carer.

I wonder if part of the problem is that extracellular water, increased in inflammation, tends to be mostly 'hindered' in that the water molecules will be intermittently binding to matrix, slowing diffusion, and also geometrically limited by gel elements in the matrix and cells when they are...

In a way I agree but if it is presented in a way that makes the rehab friendly people raise an eyebrow and move on I see it as possibly counterproductive. I can imagine the members of my old department looking at this together and guffawing. "Multisystem disease, oh yeah!" One or two would keep...

Maybe. My experience of exert patients in my RA days was that they often came out with the same echoing guff that the physicians did. And t e all experience is lived... I like to keep to what it's like for the person.

I m not quite sure what is implied in this sttement but I think I very much agree. Most medical readers will hear nothing except the social mantra that glosses everything now in medicine, and either put the thing aside or skim through as little as they can. It may seem very on message to...

I think my main grouse about this is its inaccessibility and all the distracting pictures. But also that it lectures at the reader in a way that an awful lot of health professionals are likely to see as politically correct nonsense that they can read, answer the questionnaires right and...

I agree that anyone with PEM is likely to benefit from advice on pacing but what I find so odd about this aspect is the idea that anyone should be treated otherwise in any other condition. Pushing through fatigue is not known to be a good thing in any medical condition I know of. It is not that...

Yes, but it makes most sense to keep open the idea that it is one or the other, and maybe that the Sjogren diagnosis is just a red herring - which I suspect it may be in 755 of cases, especially in private practice.

Or it is simply a download from AI. I am not sure that the cause of people with ME/CFS is served well by parrotting passing as academic writing.

That link leads us to a completely uninterpretable statement: Disorders of an autoimmune nature are known to occur with increased frequency in patients with another autoimmune disease. About 25 percent of patients with autoimmune diseases have a tendency to develop additional autoimmune...

Looking at this as a disinterested outsider, listening to hundreds of people with ME/CFS, charity representatives and physicians likely to be involved I see them as pretty much the same. I only see snake oil and rainbows. Trials of drugs were specifically flagged up as the priority by the...

To misquote Oscar WIlde: To have one AI is a misfortune To have two AI is slightly less unexpected than you might think, on a random basis (but not perhaps if you consider immunogenetic overlap) To have three AIs is something a physician might come across once or twice in a career and might...

That sounds right, although of course in neuroinflammation I suspect there will be a degree of anisoprotpy of water diffusion in white matter even for extracellular free water because of the linear architecture. The separation of these various different parameters seems very clever. What I am...

Yes, this seems peculiar, for an immunopathology in particular.

That's right because disabling fatigue is a recognised feature of Sjögren's syndrome so to add in a diagnosis of ME/CFS makes no real sense. And ME/CFS is defined as disabling symptoms without any other explanation because that makes a useful prognostic category. This isn't really about causal...

I don't think I would have ever said that. Certain autoimmune diseases are significantly associated with other autoimmmune diseases. Rheumatoid is associated with Hashimoto's. Things get complicated with lupus because lupus is in a sense a super-autoimmune disease with a tendency to multiple...