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  1. Sid

    United Kingdom: Dr Suzanne O’Sullivan (BPS neurologist)

    I think she means us paying attention to our symptoms. They believe that causes us to blow them out of proportion and become disabled.
  2. Sid

    CAR-T therapy

    They won't. People who can pay will pay, the rest will be left to suffer and die.
  3. Sid

    CAR-T therapy

    Norwegian rituximab trial failing doesn’t rule out an autoimmune process. In this meta-analysis of 4 trials of rituximab for Sjogren’s, rituximab didn’t do anything for the core symptoms including fatigue: https://www.sciencedirect.com/science/article/abs/pii/S1297319X17301318
  4. Sid

    CAR-T therapy

    Not gonna lie, this brought a tear to my eye.
  5. Sid

    Air Fryer worth it at all for someone with severe ME?

    Very happy with my air fryer. Mine can go in the dishwasher. You do have to turn/shake things though. You can’t just put it on and walk away or the results end up uneven. The big lifesaver for me has been my instant pot however. With this you can truly toss everything in and walk away. It saved...
  6. Sid

    OMF: Muscle Biopsy and Plasma Study into Post-Exertional Malaise, David Systrom, 2022

    I can get muscle pain from intense mental exertion.
  7. Sid

    UK: Royal College of Paediatrics and Child Health: Perplexing Presentations (PP)/Fabricated or Induced Illness (FII) in children, 2021

    Spare a thought for the poor doctor who is Perplexed. Gotta find a scapegoat (mother).
  8. Sid

    Genome-wide Association Study of Long COVID, 2023, Lammi et al.

    How do they know it’s complex? It could be very simple. No one knows anything about long covid, this blanket pronouncement is inappropriate.
  9. Sid

    Guardian: Private UK health data donated for medical research shared with insurance companies (UK Biobank)

    I don't see how private insurance will be possible in the future given advances in genetics. Everyone is at risk of something.
  10. Sid

    Still to open Exploring Worry in CFS/ME, King's College London

    My worry levels go through the roof when I see the words King's College London.
  11. Sid

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    Nature Communications is where various Nature journals send castoffs they won't publish, in exchange for cash. A fitting end to this NIH farce.
  12. Sid

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    Deconditioning after five years? What are these people smoking! Deconditioning hits within days. Everything about this crappy 17 person study has been a despicable disgrace.
  13. Sid

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    Not in the slightest. Many of us here warned about Walitt from day 1. I regarded this study as dead on arrival.
  14. Sid

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    As expected, they’ve found nothing and they’ve ended up in an open access journal.
  15. Sid

    Trial Report Repetitive Transcranial Magnetic Stimulation Ameliorates Symptoms in Patients with Myalgic Encephalomyelitis (Chronic Fatigue Syndrome), 2023, Miwa

    I’m sorry to be harsh but it’s 2023 and we’re still dealing with joke open label studies with no control group. An impressive looking magnet is bound to bias the patients somewhat, eh Mr Researcher?
  16. Sid

    Trial Report Exercise capacity in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) treated with long-term pyridostigmine, 2023, Systrom

    This is incorrectly analysed. The abstract doesn't present statistical difference between the groups.
  17. Sid

    The LIFT trial (OMF) - Pyridostigmine (mestinon) and Low Dose Naltrexone (LDN)

    LDN doesn't work based on numerous anecdotal reports, as pointed out by @Perrier. This is a UK-heavy forum where (useless) treatments are generally not available due to socialised medicine. For those of us in other countries who have tried all sorts of meds including LDN, this is a big...
  18. Sid

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Kaufman is the same guy who was previously convinced about Valcyte, antibiotics, rituximab etc. Seemlessly moving from one idiocy to the next.
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