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I suspect that any theory of ME will have to explain its variability and even the variability in its variability. In the first decade of my ME there were times when the idea of an on/off switch seemed to relate the some of my experience of my ME. Even in the next decade the possibility of full...

It really is bizarre that the BPS fantasists can coexist in a world with genuine scholars like Brian Hughes who can point out their logical flaws and errors of scientific fact with such facility. Thinking back to when I was a psychology undergraduate, getting on for fifty years ago, there was...

Even if one wanted to give the MEA as an organisation the benefit of the doubt in relation to the initial editorial the ‘non apology’ and the apparent failure of the organisation to address fallout meaningfully are deeply worrying.

I too am not in the US and am struggling to follow the relevant research, but it is worrying that the NIH or at least some of its researchers are pushing the concept of ‘interoception’ as part of what seems to be an ideological agenda.

It would be great to have a much better natural history of ME. There are so many basics we just don’t know. I benefit from B12 when I am in B12 deficit, but only until my B12 levels are corrected when further B12 has no impact, though I do need a maintenance dose to avoid returning into...

In order to achieve mould avoidance it is likely you have to change a lot of things (home, work, climate zone, etc), so it is not clear on the basis of anecdote alone if mould is necessarily the only or even a significant factor. I understand a significant number of people are certain that their...

On the Sheffield Group’s Facebook posting on this topic I did use the phrase ‘GET-lite’ so I imagine others will have drawn the parallel too. Though Neil Riley is not advocating increasing activity in fixed increments as a treatment as envisaged by such as PACE, he is implying that activity and...

I wondered if it was a way of taking any potential sting out debating the issue, especially as Charles, not without good reason, has a very strong personal following. If I started a separate thread on this issue, would it be better to create a members only thread in the first instance?

Does anyone know if Charles Shepherd has been nominated for any UK honours in the past? Apparently the Cabinet Office don’t like too frequent nominations for the same person, but I wonder if nominating him for an honour now might be a useful accompaniment to pressure on the MEA to reform its...

The Sir Simons, the Garners and the Oslo Consortiums will be rubbing their hands in glee as this editorial basically echoes their main points of attack on the current NICE guidelines.

So sad that the MEA gives prominence to such a significant failure to understand the central symptom of PEM. How can they publish this glorification of what is essentially a formulation of GET without any allusion to the concept of PEM? All other things being equal humans have evolved to be...

I think one of the reasons people raise the possibility of subgroups, as others have said, is the enormous variability we see within and between people with ME. It is possible that there are different clinically meaningful subgroups within ME, or it could be that once we understand the...

I have been lucky not having caught Covid (yet) even despite having shared my home with some one with an active infection some two years ago; we did manage to seal part of the house off with a dividing door and sheets pinned over both sides of that door. I am being cautious in a limited sense...

Thank you @Trish for wading through this document, do let us known when you find the caveat ‘except when such trials relate to ME/CFS, then all of these necessary methodological design principles can be thrown out of the window’.

The limiting factor is my underlying ME. In general my answer is ‘no’, but there are windows when my underlying ME is remitting when my answer would be ‘yes’ within the limits of any improvement in my underlying condition.

I lost any hope for the BPS crowd being shamed by others use of their bad science. I had thought Prof Crawley’s Lightening Process study would be the reductio ad absurdum of this research methodology, but instead the BPSers swung behind quackery of LP. Presumably unless they can just get away...

I suspect many researchers using these endless questionnaires so much have forgotten this basic of psychometrics that such numerical values do not represent actual numbers but are effectively a metaphor, that is if they ever knew it. [edited to remove a confusing preposition]

For me lying flat is an issue. When I still worked, in the last century, over a decade before I had any concept of orthostatic intolerance, I used to lie flat my office floor for fifteen minutes or so at lunch time, to help get through the day. Now for me the amount of time I can spend not being...

I wonder if there is any relationship between alcohol intolerances and the other food intolerances I experience. The effects of alcohol on me are less predictable than other intolerances: Gluten - get a migraine almost exactly 24 hours after consumption as well as worsening of any general PEM...

I just remembered that the MEA had done an alcohol intolerance survey about a year ago: https://meassociation.org.uk/2024/01/alcohol-intolerance-me-cfs-and-long-covid-survey-results/