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It is not completely unusual for someone following a CVA or head injury to develop a different accent. If the neurologist actually said that the brain somehow founded it easier to cope with an FND by speaking in a ‘Welsh’ accent it hardly inspires confidence in his scientific rigour.

I thought with the first post, ah good big Pharma willing to put resources into finding treatment(s), then with the second post this thread my hopes were dashed. I suppose any organisation raising the issue is a good thing, but it is a massive research effort that is ultimately required.

Didn’t the LP people also claim LP was being ‘used’ under the NHS banner somewhere in the English Midlands, though I don’t think it was established where or in what circumstance?

I think there is a problem with the situation where the definition on ME/CFS requires impairment of 50% or more of ‘normal’ functioning in two situations: gradual onset where any impairment emerges slowly, does this mean that the person does not have ME/CFS up to the point of 50% impairment, or...

It strikes me as interesting thar Crawley, increasingly struggling to get subjects for her paediatric ME/CFS research has now started research on ‘newer’ CBT variants with children not cured by the Bath clinic. One wonders at the contradiction between her previous claims of high levels of...

I also used caffeine and sugar to self medicate when still working, but I agree that it is wrong to say ‘many people with ME/CFS’ as we don’t really know numbers or percentages, all we can say is ‘some people’. (I now need to avoid both.)

I would say that diet is relevant to us only in terms of appropriate support levels. Do we have the carer time available to us to have a choice to eat healthily or not? Someone very severe with out appropriate levels of support may have no choice but to eat cold food straight from the tin...

Indeed some of these CBT/GET true believers, such as Prof Crawley explicitly support LP, and their supposed scientific supporting evidence uses the same flawed experimental design used to justify LP.

Thank you @Tapanui 'Flu for putting in the work to share this important information, it was something I knew nothing about. I just skim read the two links but will return to read this more thoroughly.

A very interesting idea, I have not yet looked at your blog discussing that, but will come back to this later. When I was still working one colleague was pretty good at spotting when I should be stopping, she said there was a point when ‘my eyes glazed over’ and in my verbal responses ‘I wasn’t...

It wouldn’t be me if I didn’t go off on a tangent. My niece is getting married in four weeks, but the planning to get me to the wedding started in February and has taken a significant proportion of my available activity since: organising my goddaughter and her partner to drive me, an air B&B for...

I struggle with searching the site here, but I have wondered for a while if there is not a thread already if we should have one devoted the Post Exertional Malaise series. I have not seen all the podcasts, but those I have are well worth watching.

A possible involvement of Herpes viruses has been raised a number of times. I am not optimistic that this will give us answers to what is ME, but even a negative result will be a useful finding and help to direct future research.

Don’t be ashamed, BACME are something of a closed shop, as @Trish ’s attempts to establish opportunities for non clinicians to attend today illustrate and they are not necessarily committed to patient engagement as can be seen by @sarahtyson taking her ball home when challenged in the thread on...

This is probably not much help to the aim of this thread, but for me the biggest concern about CFS is that people generally think they understand what it means when they don’t, so they don’t look further, whereas they usually don’t understand ME or ME/CFS so they ask.

Also evolution is not always about single issues. Often things are tied together, getting rid of one apparently undesirable trait might have a knock on effect on a desirable trait. A good example might be the cost of giving birth to children with such large heads, not great for mothers, but...

I had the same problem, interpreting this as the actual quantity of waste water rather than Covid marker levels in the waste water. I had an image of shallow sewage ponds. Now all makes sense.

What impressed me was that in addition to the advocacy content, with a limited light palette and very limited room scape @Grigor you created something that was also visually compelling.

At present I am mostly not experiencing significant nausea, but I definitely can relate to it, as I had a number of years when it was pretty constant. The trifecta that really got me was feeling both hungry and nauseous but with no energy to try to navigate this dilemma to try to find something...

I voted, but don’t really feel any one symptom is the most disabling, rather it is a constellation of a number of issues. Especially as all in the list above vary with each other. I put cognitive impairment as that is what is frustrating me the most at present, but another day I might have...