Search results

I too had had misinterpreted what you meant by ‘negative bias’ as relating to the Born Free protocol in general or even our more general scepticism of any unevidenced treatments, and now I appreciate you are taking a more nuanced approach. But I still argue we should approach all individual...

I tried to copy the brief section that explained the content the programmes but failed to do this from the pdf of the full article. However they do state there is currently no curative treatments and that we need to be focusing on symptom management.

I think the advantage of such a study would be more than just providing an overview of variation in ME/CFS but it would add to the information on using activity levels and hopefully work towards actimeter use becoming a standard outcome measure in ME/CFS trials.

To continue the anecdotes. For the first twenty years or so of my ME I was repeatedly surprised by my preserved fitness and lack of deconditioning. My ability to undertake physical activity when in remission returned to premorbid levels without any apparent delay. It has only been in the last...

Have we done a poll on this before?

‘It is quite easy to evaluate if someone has had a childhood trauma that caused their CFS. If they have CFS then they had such a trauma.’ However seriously, such theories are totally unfalsifiable retrospectively and therefore are not science. It is impossible to objectively quantify trauma...

I wondered if sometimes we are seeing the King Lear effect "But where the greater malady is fix'd, the lesser is scarce felt”. Silly as it may sound, I do sometimes feel that life is easier when I have a more straight forward condition in addition to my ME. For example I occasionally get bouts...

Whitney’s improvement, both in relation to feeding and more recently to speaking, is most valuable in that it offers hope to the very severe. It tells us that on going deterioration is not always an inevitable consequence in very severe ME/CFS, and my take away is that it provides anecdotal...

If someone is experiencing an ongoing steady recovery, but early on in that starts an ‘intervention’, then as they continue to improve they are more able to double down on the intervention. So their commitment to the intervention is associated with further improvement, so it is understandable...

If six percent of people with ME/CFS do recover, what percentage of them go on to develop a marketable treatment package which becomes a major source of income? Given the enormous range of backgrounds of these evangelical recoverees, and the equally large variation in their ‘treatment’...

Thank you @kacheston for participating in this thread, it is much appreciated.

When people have been living with a specific diagnostic label for some years, be it either ME or CFS, they can feel got at if others say that name is somehow invalid. Given whether someone is diagnosed with ME or CFS is largely a historical or geographical accident, the combined term ME/CFS...

Not sure how relevant this is, but first reading this thread what came to mind was how much disillusion there was amongst NHS nursing staff well before the pandemic.

Do we know how likely it is that seasonal flue triggers ME/CFS? Presumably it is at a lower level than such as Covid-19 and EBV. When I was in remission early on in the course of my ME, initially triggered by EBV, a presumed bout of seasonal flue triggered a major relapse, that forced me to...

Obviously anecdotes are not easily interpreted, but this Reddit quote of a ‘crash’ in MS sounds like very dramatic increased fatiguability rather than ME/CFS type PEM as I understand it. When I experience a rapid crash like this I do not interpret it as PEM if it resolves over just a few hours...

At first glance it feels to me that this is part of an increasing trend to focus on imposing a consensus amongst professionals, and secondarily amongst patients, as to what the desired narrative should be. Imposing the ‘correct’ narrative seems more important than understanding the coherence of...

I am not saying that PEM is unique to ME/CFS, but I do feel that we have not yet adequately confirmed that it occurs in other conditions. As we have often raised here, a big problem is that many people including some ME/CFS researchers confound it with more rapid fatiguability that does occur...

I personally have no problems with fibre in my diet, but I have fairly frequently come across others with ME/CFS reporting such issues.

I don’t know if a CEO is the right approach or not, but my current concern is that the MEA needs to get its member participation right before it makes such major changes. Historically the trustees have seen members not as partners, but as passive recipients of their beneficence. It may be that...

Given the current limited evidence on this procedure I am not sure how anyone can make a fully informed choice. It may be that adults are in a position to decide to take a gamble, however I am not sure that given the risks of the procedure not helping but rather harming, that anyone should be...