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Absolutely. Can tell it's AI based only on those few sentences.

Yes, they definitely need that too.

I am actually suprised FME is still going. It all seemed to fizzle to almost nothing a few years ago. I have just seen that their website is being redeveloped, which is good because it was awful. https://forward-me.co.uk/

There's a 'not sure' option, which will likely apply to many of us, especially in the UK where testing is sparse.

I really doubt it. It's probably due to PR from Oxford Biodynamics.

Yes, this is what I was getting at. For example a combination of clinical tests aid diagnosis of Guillain-Barré Syndrome (GBS), but the overriding disease mechanism is unknown.

Are there examples of good diagnostic tests for other aquired syndromes? I get what Jonathan is saying about not having a 'ground truth', but I can certainly see a scenario where a clinical test could be part of diagnosis.

It sounds like you may be experiencing allodynia, which is more common in severe ME. I hope things improve for you.

It seems that if you have enough money to take all these expensive tests there's a good chance you might end up with a Lyme disease diagnosis. I simply do not trust these tests based on what I've read about them and the clinics who sell them. The whole situation is infuriating.

Merged posts ---------- This guy has Castleman disease and says he was close to dying. An off-label drug — which happens to be rapamycin — has led to prolonged remission. He now runs Every Cure working on repurposing off-label meds: https://everycure.org/

The 2025 AGM is today: https://www.actionforme.org.uk/our-2025-agm/ The 2024/25 Annual Report & Accounts has just been published: https://www.actionforme.org.uk/resource/action-for-me-2024-25-annual-report-accounts/. I can't upload the PDF because apparently it's too large.

Ok yes it's paywalled, it's just not very clear on the journal page.

I can't seem to download the PDF. Clicking the PDF link just opens a new window rather than triggering the download.

Background Neuroimmune processes are often implicated in young people with atypical neuropsychiatric disorders, yet treatment implications remain controversial. This case series details young people with primary psychiatric disorders who received adjunctive immunotherapy after thorough...

I don't think it is. It seems to be a reanalysis of data from a Charite study: B. Jäkel, C. Kedor, P. Grabowski, et al., “Hand Grip Strength and Fatigability: Correlation With Clinical Parameters and Diagnostic Suitability in ME/CFS,” Journal of Translational Medicine 19, no. 1 (2021): 159...

NIHR's DecodeME contribution was £1.4 million (https://www.nihr.ac.uk/news/largest-genetic-study-myalgic-encephalomyelitis-launched). Where did the other £2.3 million go? If you search the NIHR database, funded during this period were a PSP project worth £200,000 and a £150,000 project on a new...

I get a numb patch on the outside of my left thigh when lying down. It's always the exact same spot. It's not quite pins and needles, it just goes sort of dead/numb whilst the rest of the leg is fine. I think it could be Meralgia Paresthetica, but it happens more when I'm crashing and it only...

I ended up leaving a comment on the original preprint (see above). The paper is fundamentally flawed but they've clearly decided to press on.

This is a rehash of this extremely dubious preprint: https://www.s4me.info/threads/there-is-no-established-connection-between-long-covid-and-chronic-fatigue-syndrome-2025-kouyoumdjian-et-al.44771/ EDIT: But the title has changed.