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  1. rvallee

    Five years before multiple sclerosis onset: Phenotyping the prodrome (2018) Wijnands et al

    I have seen a few articles lately about replicated findings of high levels of prior anxiety diagnoses in many autoimmune diseases. It's looking more and more like a high proportion of anxiety diagnosis may simply be early symptoms before the disease can be detected. Occam's razor suggests the...
  2. rvallee

    CDC Posts NEW CONTENT on ME/CFS (July 12, 2018)

    This was in a forum restricted to medical professionals and heavily moderated. Mostly physicians. This isn't the first time either. They do the same every time research updates get posted there or on other subreddits reserved to professionals. Still worth it because it's better to talk about it...
  3. rvallee

    CDC Posts NEW CONTENT on ME/CFS (July 12, 2018)

    I'm not going to link to avoid further tickling the dragon, but the CDC update was posted on the /r/medicine subreddit yesterday and it shows just how much work we have to do. The reaction was overwhelmingly hostile and comments accusing the CDC of bending to anti-science activists were the most...
  4. rvallee

    David Tuller: Trial By Error: BMJ Still "Looking Into" Lightning Process Paper

    At this point I'm not sure of the answer. UK medicine is entering a bizarre reversal into pseudoscience for the sake of cutting costs everywhere.
  5. rvallee

    UK: The Yellow Card Scheme has been confirmed as the route to report 'adverse incidents' from GET and CBT (or has it?)

    Acceptable for CBT but GET is physical therapy. It has an added layer of gaslighting but at its core it is physical therapy and not just a psychological treatment. Question is whether physical therapy is exempted, which would be bizarre.
  6. rvallee

    UK: The Yellow Card Scheme has been confirmed as the route to report 'adverse incidents' from GET and CBT (or has it?)

    It's important to put them on record. Right now the mantra of "no harm recorded" is accurate. It's misleading because they specifically do not provide a means to report them. But it is accurate to say that no harm has been recorded. It's the same with PACE. We know there was deterioration and...
  7. rvallee

    Stamina levels before ME/CFS?

    Almost limitless. I always had pretty bad sleeping problems that lead to sleeping very late in my teenage years but whenever awake I used to have unlimited energy reserves and was more of a night owl so it may mostly be a lopsided sleep cycle. For me it's the most annoying part of the CBT/GET...
  8. rvallee

    A university went to great lengths to block the release of information about a trial gone wrong. A reporter fought them and revealed the truth.

    Just in case she could be interested for more, I sent her an invitation to look into the PACE trial.
  9. rvallee

    David Systrom, researcher, Brigham and Women's Hospital, USA

    I think this could be the same test? Dr Systrom mentioned briefly the test in that it involves a... blot? can't remember what term he used, and then a few weeks later nerve conductivity is tested. I mentioned this because I caught that in the video. I seem to have misheard. I used the...
  10. rvallee

    PACE trial graphs and gifs

    If you have more data I could probably help you cut that workload significantly. I was a software developer. I particularly dealt with data manipulation, representation, conversion and display. I work much slower than before but the knowledge is still all there.
  11. rvallee

    David Systrom, researcher, Brigham and Women's Hospital, USA

    I've been following everything I can find about the disease for 2 years and it's the first I've heard of him. I think there are a lot more people out there working on this than we are aware of. Research cycles are long so that's kind of normal as we only hear when results are published but it's...
  12. rvallee

    David Systrom, researcher, Brigham and Women's Hospital, USA

    Dr Systrom seems to think it's a reasonable hypothesis that it could explain the stimuli sensitivity that many of us experience, that one potential mechanism of SFPN is a form of amplified stimulation by lowering the firing threshold. If it can affect pain receptors it's reasonable that it would...
  13. rvallee

    David Systrom, researcher, Brigham and Women's Hospital, USA

    Dr. David M. Systrom of Brigham and Women’s Hospital (Boston) is confident that his team has objective evidence of small-fiber polyneuropathy (SFPN) in 40-50% of ME patients. Dr Systrom was interviewed by Llewelyn King in this video: . I put the timestamp at the part involved with SFPN but the...
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