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From: https://www.s4me.info/threads/three-part-article-on-cognitive-therapies-mindfulness-garner-etc-2025-long-covid-advocacy-substack-article.44261/post-622521 And mental exertion uses minimal calories – fewer than the type of physical activities which the same patients are able to do without...

They won’t need to claim that it proves their position, just that it doesn’t disprove their position or that it is consistent with their model. We hope and expect that the publication of the DecodeME results will lead to a lot of media coverage. For different results, it seems fairly...

If they are not wilfully misunderstanding, their inability to understand would be alarming. [Edit: I have reworded my comment above in order to adhere to forum rules.] Larun: No Hilda states that the 2021 Nice guideline no longer recommends exercise as a therapy, and stresses the...

Yes. Rule 1: Don’t bring it up. Rule 2: Rehearse how to respond if/when others bring it up.

Sometimes autocorrect is genius. My favourite was when it changed Wessely to Weaselly :emoji_ok_hand: I’m also liking the new emoji range. I see @Trish has one for herself :emoji_koala:

I don’t think I would say that – a bit too close to saying that unhelpful thoughts can perpetuate the illness for my liking! :oops:

I didn’t say that they don’t play any role on the illness. I said “there has never been any evidence that thoughts play any role in causing the disease”. Absolutely, which is why I said “Depending on the the results of DecodeME”. The DecodeME team will know the results long before they are...

Depending on the the results of DecodeME, a good response to questions like “Are you claiming this proves it’s not all in the head? … It’s a combination of physical and mental, isn’t it?” might be something like: We now have enough data to say with confidence that ME/CFS is a biological disease...

The difficulty is in saying something which accurately conveys what we want people to understand, is succinct enough for a short interview and comprehensible to an intelligent lay audience. But psychiatric illnesses are not all in the head. There are predisposing genes, there may be...

Yes, something along those lines would be an excellent response.

Yes, I thought the interviewer, Nick Robinson, was poor and clearly under the influence of the SMC. Hard to know how best to respond to those sort of questions but perhaps a good rehearsal for when the DecodeME results are published. I agree that Chris did well by largely ignoring the questions...

The Times: I think it’s a shame that The Times article puts the emphasis on the potential for these results to lead to a blood test for ME/CFS. That would be great but I think it’s somewhat misleading to suggest that these results are likely to lead directly to a blood test. As far as I...

I think it’s more accurate to say that it is not unusual for patients be be diagnosed with ME/CFS and recover within 2 years but that recovery is unusual thereafter – as I think has been said earlier in this thread. There are many reports of people recovering from ME/CFS following...

BlueSky Post: Excluding Royals, there are currently 47 Knights Grand Cross of the British Empire but no Dames Grand Cross. It it somehow fitting that someone who has been so persistently wrong about an illness which is so much more prevalent in women should be awarded an honour that is so...

I agree with @Hutan. [Edit: From earlier in this thread:] But CCC only requires symptoms for 6 months for adults, and as far as I’m aware it makes no reference to monophasic improvement, which I suspect may be highly relevant in predicting long-term outcomes – although I’m not aware of any...

The first reviewer, Brett A. Lidbury, writes: Jonathan replies: My experience was that some of my ME/CFS symptoms came on quite suddenly and were very different to the flu-like symptoms I had from the infection, or any symptoms I had had before. Specifically, I thought I had developed an...

Yes, but then you're saying if it goes away it's not ME/CFS - in which case the definition of ME/CFS is a disease which doesn't resolve. That is not currently a standard definition. I also think it is exceedingly important to be able to be distinguish between the two - not least so that people...

Another question for which I apologise if it's already been asked: If I contract a viral infection, I often find that my ME/CFS symptoms often seem to improve in the time between infection and the onset of symptoms of the virus. I gather that at least some other people with ME/CFS experience...

I'm now on page 13 of this thread and running out of capacity to I'm going to post some comments while they are in my mind and apologise if they have been covered: I think that would be worthwhile. I'm a bit confused about your arguments here. Until we understand the mechanism or have...

@Jonathan Edwards I'm only on page 11 of this thread so apologies is that has been pointed out but the link for Ref 57 in the paper (Zhang et al) is wrong: Link in preprint: https://doi.org/10.1101/2025.04.15.253299 Correct link: https://doi.org/10.1101/2025.04.15.25325899