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You've probably come across my threads here. I have quite severe visual processing problems. I have a bad case of 'visual snow syndrome' which is much more than seeing static. The most disabling symptom for me is afterimages (palinopsia). It's another condition that is not well understood and is...

At this stage we need to proscribe Scientific Reports.

Probably a worthwhile study. I don't think the average GP is clued-up about the different side effect profiles of anti-depressants, aside from the most obvious stuff. They just seem to have their own 'favourites' that they feel comfortable prescribing.

I don't really know enough about proprioception but it seems anything that invovles the brain's processing of signals can be affected, and this is just one part of the puzzle for some patients.

We've discussed this case previously here: https://www.s4me.info/threads/uk-dr-sarah-myhill.18699/post-372441 I can't remember the reason why it's in the Myhill thread, but there was a reason! EDIT: The author references Dr Myhill frequently in the website article, and it seems he may have...

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...