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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.

What did you think of the KCL paper on persistent fatigue and interferon alpha @Jonathan Edwards ? https://www.sciencedirect.com/science/article/pii/S0306453018301963?via%3Dihub

BACME Conference: Meeting the needs of people living with severe and very severe ME/CFS and their carers BACME is pleased to announce we will be holding a half-day online conference focusing on the needs of Severely Affected patients and their carers. The conference will be...

BACME are currently conducting a survey exploring the experience of people living with ME/CFS in the UK who have required tube feeding at some point in their illness. A very small number of people living with ME/CFS develop nutrition related problems severe enough to be considered for tube...

Postural orthostatic tachycardia syndrome (POTS) is a chronic, multifactorial syndrome with complex symptoms of orthostatic intolerance. Breathlessness is a prevalent symptom, however little is known about the aetiology. Anecdotal evidence suggests that breathless POTS patients commonly...

Another paper from Sirotiak. https://www.s4me.info/threads/beyond-fatigue-an-intersectional-analysis-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-and-social-identities-2025-sirotiak-et-al.45324/post-627840