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  1. Sid

    Norway: Røysumtunet, a centre for severe ME patients

    This seems quite similar to the inpatient “rehab” programmes you see these days for FND. Walking a few steps further between bars is interpreted as treatment success. In actuality, a reduction in overall physical activity took place if you consider that you don’t have to do any chores or food...
  2. Sid

    Norway: Røysumtunet, a centre for severe ME patients

    Good old activity substitution.
  3. Sid

    A general thread on the PACE trial!

    Coyne’s article rings true. The peer review system is crazy and must go. I’ve experienced many weird, incorrect reviews over the years. Not ad hominem abusive like what he describes at the BMJ (which is a huge cesspit) but just people not reading your article or saying wrong things and the...
  4. Sid

    Contesting the psychiatric framing of ME/CFS, 2017, Spandler and Allen

    That’s the thing. The psych framing presupposes that the patient hasn’t tried the blindingly obvious solution first which is to exercise your way out of it. They are saying we are that stupid and insane that we just took to bed and never tried to take any action to get out of it.
  5. Sid

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    The whole negotiation thing implies that the patient is refusing to do more activity for no reason and that the job of the therapist is to coax them into doing the right thing by negotiating little increments each week. It’s very insulting and wrong.
  6. Sid

    The multi-generational familial aggregation of interstitial cystitis, other chronic nociplastic pain disorders, depression, & panic disorder 2023 Fyer

    Not surprised to see this link. IC is one of the symptoms I’ve struggled with as part of my ME/CFS.
  7. Sid

    Professor Gerd Kvale on Long Covid

    You’re doing too little AND too much.
  8. Sid

    Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

    The losses far exceed the gains as far as I can see. Losses include moronic pimply junior doctors feeling entitled to speculate about your mental state and motivations.
  9. Sid

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    FND is just the name neurologists give to ME/CFS (and other unexplained symptoms). So it’s not surprising at all that FND people are involved in this.
  10. Sid

    United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

    But truly delusional people who think their guts are rotting or that they can’t swallow get medically treated all the time to give them nutrition by other means. So why are we being singled out for death?
  11. Sid

    United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

    I don’t really understand what the hell is going on in the UK. Even if you believe the problem is psychiatric, when the case becomes this severe you still manage it medically. It’s done every day with severe cases of anorexia, depression etc. so I don’t understand what the issue is. The cause of...
  12. Sid

    Neuro appointment soon.... Avoiding an FND diagnosis

    Yes, or losing credibility. I mean, this stuff is so prevalent now.
  13. Sid

    Neuro appointment soon.... Avoiding an FND diagnosis

    I’m not in the UK but I heard a psychiatry colleague mention FND and cite Stone’s incorrect prevalence estimate in neurology consults. I had never EVER heard anyone use that phrase offline in my life previously so the cancer is definitely spreading far and wide. I almost replied “ACTUALLY...
  14. Sid

    Functional Neurological Disorder (FND) - articles, social media and discussion

    I’m surprised he’s able to get away with having this website up and advertising his nonsense directly to patients. If this were a medicinal product not CBT he would have been shut down by the regulator already. There is no evidence for his claims. The CODES trial definitively showed that CBT...
  15. Sid

    Suramin as a possible treatment for Autism, ME CFS and Long Covid

    Also, it looks like one patient in this small study got status epilepticus in the 20 mg group. Not saying this is causally related but it should be noted. https://www.europeanpharmaceuticalreview.com/news/164740/iv-suramin-may-be-a-promising-autism-treatment-shows-phase-ii-study/
  16. Sid

    Suramin as a possible treatment for Autism, ME CFS and Long Covid

    So it seems that the Phase II trial in South Africa did not replicate Naviaux’s original finding of 20 mg being more effective than placebo. He had 5 patients per arm in the original trial if I recall. In this new trial, 10 mg appeared to be more effective in that it seemed to separate from...
  17. Sid

    One-session treatment compared with multisession CBT in children aged 7 16 years with specific phobias: the ASPECT non-inferiority RCT, 2023, Wright

    Treatment of simple phobia is the only area where I would concede that efficacy of CBT over doing nothing has been demonstrated. However, this is the easiest psychiatric disorder to treat, low hanging fruit. Evidence is a lot muddier for more complex anxiety disorders like panic with...
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