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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Scarecrow

    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    Nathelie's email is on her twitter account.
  2. Scarecrow

    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

  3. Scarecrow

    Fatigue after sleep

    It is quite common with ME/CFS to wake up with joint pain but if you are in a position to, you should get checked for inflammatory arthritis just in case. Failing that, waking up in pain can be a symptom of poor sleep, so if you think that could be a factor that's something you could try to...
  4. Scarecrow

    Fatigue after sleep

    I forgot to say earlier, as someone who's had a general anaesthetic, that does make sense. All we need now is someone with experience of both.
  5. Scarecrow

    Fatigue after sleep

    Since the OP, what has struck me about this thread is the number of people replying and identifying given the vague tile - 'fatigue after sleep'. From a quick search, sleep paralysis does seem to be more prevalent in groups who experience poor sleep, so no surprise that many here will be...
  6. Scarecrow

    Fatigue after sleep

    I've never experienced anything like this but I find it very interesting. The usual descriptions of sleep paralysis indicate that the paralysis only lasts a short time. It sounds horrific to be experiencing this for an extended period. Are the symptoms following paralysis of the same quality...
  7. Scarecrow

    Rituximab Phase III - Negative result

    I don't know about purely objective but they did use Sensewear Armbands but only for a limited period of time. https://clinicaltrials.gov/ct2/show/NCT022299 Also the conducted further studies in parallel to the trial. deleder2k said that they have observed Flow-Mediated Dilation but I'm not...
  8. Scarecrow

    Fatigue after sleep

    That sounds like a sleep disorder, as if your brain is still sleeping, even though you are conscious.
  9. Scarecrow

    Rituximab Phase III - Negative result

    I'm so sorry. Absolutely. :thumbsup: I think the common themes in everyone's reactions, despite our disappointment, are gratitude to Fluge and Mella and taking consolation from what they have managed to achieve so far. They have definitely given hope for the future. In case anyone is thinking...
  10. Scarecrow

    Rituximab Phase III - Negative result

    @deleder2k I don't know if it's still not ok for you to comment on your own response until publication but I just want to say that I hope so much that you got a positive result.
  11. Scarecrow

    Rituximab Phase III - Negative result

    Overall, such disappointing news but there does seem to be a suggestion that it's effective in a minority group. And if that's true, it's still something positive to take from the trials. Fingers crossed that UCL can elucidate what's going on.
  12. Scarecrow

    David Tuller: My brief encounter with Prof Crawley

    I was hoping to be able to do a transcript when the video is available - if one hasn't already been done.
  13. Scarecrow

    What does high B12 mean?

    Can anyone comment on these results? My active (holo-transcobalamin II) B12 levels are just slightly exceeding the high side of normal, but nearly 50% of total B12, which is low-ish normal. Serum folate is deficient. Based on my limited understanding active B12 is generally between 10 and 30%...
  14. Scarecrow

    POLL: Do you have tenderness at Perrin's point on your left breast (diagnostic for ME/CFS)?

    Ideally, your healthy control should not be a relative.
  15. Scarecrow

    POLL: Do you have tenderness at Perrin's point on your left breast (diagnostic for ME/CFS)?

    Both sides are tender but my right is slightly more so than the actual Perrin's Point.
  16. Scarecrow

    Perrin claims 86% success rate diagnosing ME/CFS

    I can't give you the earliest date for this but it was no later than 1994, which is when he began a series of small trials, the first of which incorporated Perrin's Point. The paper was published in 1998, so that ties in nicely with your doctor's interest but it's odd to confuse that with the...
  17. Scarecrow

    Perrin claims 86% success rate diagnosing ME/CFS

    You may well find that it is tender on both sides and in a proportion of people it's worse on the right.
  18. Scarecrow

    Perrin claims 86% success rate diagnosing ME/CFS

    The Perrin Technique dates back to the late 1980s, it'll be the other way around.
  19. Scarecrow

    PEM from long car trip

    Well, I couldn't climb a mountain but I know what you mean. Is it possible that being too active physically is contributing to the head fatigue? I do get physical symptoms of PEM but, in general, long before that happens, my brain will already be shutting down.
  20. Scarecrow

    25 Oct E Crawley speaking at Better Science Better Data event......

    She has past form for that sort of behaviour. Never let the facts get in the way of a good image. Anyone remember the "preppie" American girl and the Armenian family in the British Renal Society talk?
  21. Scarecrow

    25 Oct E Crawley speaking at Better Science Better Data event......

    Well, isn't that nice. EC is just "thrilled" about sharing data with other researchers. She doesn't have a problem with it. @Keith Geraghty
  22. Scarecrow

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    Apart from being quite simply horrified at Esther's antics, I'm also oddly disappointed. I saw her at the first CMRC conference and she struck me as someone who would move deftly toward a biological understanding. Whether anyone would have forgiven her for the harm already caused was another...
  23. Scarecrow

    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    Not forgetting the in vitro muscle cell study: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0122982 Nice summary from MERUK. @halcyon @Murph Thought you might be interested in the earlier Newton study using muscle cells. As expected, fewer samples than in this PBMC study.
  24. Scarecrow

    Looking for safe, gentle stretch “exercises”

    That was the straight leg raise. See discussion on this thread: http://forums.phoenixrising.me/index.php?threads/neuromuscular-strain-increases-symptom-intensity-in-chronic-fatigue-syndrome.45731/ A stretch that I like is the tummy twist, the 12th exercise on this link...
  25. Scarecrow

    25 Oct E Crawley speaking at Better Science Better Data event......

    Thanks @Demepivo. Useful to know. I'm a FB denier. How ironic would it be if EC does try to prevent it given the nature of this event?
  26. Scarecrow

    25 Oct E Crawley speaking at Better Science Better Data event......

    Is anyone able to record EC? I'm not going to be able to watch it live but if no one is able to record, I may buy the software.
  27. Scarecrow

    Professor James Coyne commenting on poor British and Dutch fatigue research

    I'm not entirely sure how to take your comment because I can't see how firmly your tongue is in your cheek. Any how, pressing on..... Perhaps he never had a high opinion of them but when PACE game to his attention it really game him a reason to have a go at them.
  28. Scarecrow

    Driving with ME/CFS

    I know, and that'll be a bit scary for you at first. Just trust them to avoid you.
  29. Scarecrow

    Driving with ME/CFS

    Good question. This depends so much on how ME/CFS affects you individually. I learned to drive when my illness was very mild (before I even knew I had it). It's one of the few things that I can still do well and enjoy. You're absolutely right to be concerned about mental fatigue so this needs...
  30. Scarecrow

    Rethinking chronic fatigue syndrome (The Saturday Paper, Australia)

    "Threat receptors" suggest toll-like receptors.