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That is interesting. When I was bedridden at least one doctor observed that I did not have any significant muscle wasting which was surprising given that I had been in bed for about 5 years at that point. (The dr I’m thinking of was doing was assessing for incapacity benefits l. I wasn’t sure if...

FWIW, I think it’s important enough to make it clearer. Off the top of my head, I think Leonard Jason’s prospective study found that the majority of people who met ME/CFS dx criteria at 6 months following mononucleosis recovered within 2 years but that recovery was rare thereafter. NB I’m saying...

Nicely put.

Are we nearly there yet? Starting to wonder if somebody has invited the editor out for a beer!

I think most of us are in agreement that the tin is mislabelled. AFAIR none of diagnostic criteria require muscle pain. Pain is one of the worst symptoms for me but it never feels like muscle or joint pain. It’s all over pain, as though my body is screaming for something it can’t get. But I...

I’ve not started reading it yet but I sincerely hope that this document is 100% accurate – that it doesn’t overstate or misrepresent anything he has said, or make any claims which can’t be proved. Anything else could be counterproductive – and potentially disastrous.

Should it not be disease now instead of syndrome?

Would it be better for the name to be an acronym or a initialism? [Edit: see: https://www.s4me.info/threads/patients-with-severe-me-cfs-need-hope-and-expert-multidisciplinary-care-2025-miller-et-al.44129/page-17#post-611965] How about LMT disease? (a Little More T cells)

.. A couple more questions while we’re waiting for the paper to drop: 1. If your hypothesis proves to be correct, can you suggest what the disease should be called instead of ME/CFS? 2. Do you think that ME/CFS could be more than 2 diseases? I know that I am not alone in wondering if I may...

I don’t know – that’s why I asked the question. As a layman, I would describe RA as an autoimmune disease, and FMF as a hereditary auto-inflammatory disease (or disorder). If your hypothesis was correct, what would be the most accurate equivalent answer to the question: What is ME/CFS? Would...

@Jonathan Edwards I’m jumping the gun a bit but does the mechanism you propose predict that ME/CFS is a neuro-immune disease? If not, what would be an accurate description?

Just a reminder that this is a public thread.

Yes, and that there is tantalising, eminently solve-able puzzle out there begging to be solved.

Looking forward to reading this. It is 36 years since SW suggested “a little more psychology and a little less T cells would be welcome” in a review of books about ME/CFS (BMJ, June 1989: https://www.simonwessely.com/Downloads/Publications/CFS/3.pdf). I would be delighted if any hypothesis...

While I appreciate their support and intentions, and agree with much of the content, I’m not sure that I would have signed this letter. As others have articulated in other rapid responses, the fundamental error in the Miller article, and the whole BPS approach, is that it makes potentially...

Thanks. Yes, I suspect many have had worse experiences pertaining to benefits than me. Thankfully all the benefits assessors who have met or spoken to me have been polite and apparently sympathetic – and I’ve been lucky until now to have financial security from my parents. It is just the system...

It’s just something you have to accept if you send letters to newspapers for publication. They used to always phone to approve edits but they’re all running on tighter budgets now so it very rarely happens these days. Often the edits are made to shorten the letter to fit the available space.

For interest, this is the unedited letter I submitted: Dear Editor, As someone who has been severely disabled by ME/CFS for more than 30 years, I can relate to Ed Davey’s feeling of betrayal in having to list all the things his son can’t do when apply for the Motability scheme...

My letter in the Sunday Times: https://www.thetimes.com/article/7ca70835-10d8-4c7c-afc7-37a262ae4b30?shareToken=09b55d03e27e4597cf9cff05d050de27 Published version: Motability scheme As someone who has suffered from severe ME/CFS for more than 30 years, I can relate to Sir Ed Davey’s feelings...