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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. Apollonia

    Neurological symptoms apparently not a result of SARS-CoV-2 infection of the brain

    My sympathies to you. The sensory stuff sounds just awful. My symptoms have worsed since I had covid, and I've had symptoms I never had before. I used to have POTS and dysautonomia but none of the obvious auto-immune symptoms. Now I am getting a fever with swollen glands every couple of weeks...
  2. Apollonia

    Change in symptom presentation?

    My symptoms changed after having covid last August. Since 1989 I have had the POTS/dysautonomia type of ME with emphasis on poor temperature control (along with the usual PEM; unexplained fatigue; cognitive, memory, and sleep problems; and constant pain, sometimes localised in hands and feet...
  3. Apollonia

    Jones et al., 'Selective Inhibition of NaV1.8 with VX-548 for Acute Pain' NEJM 08.03.2023

    https://www.nejm.org/doi/full/10.1056/NEJMoa2209870 Summary of findings: https://www.drugs.com/news/researchers-explore-new-nonaddictive-means-fighting-pain-114170.html?hash2=23ebf82608bc6281f942e7b1cf323e06 Link to NEJM podcast (with transcription) including interview with Yale neurologist...
  4. Apollonia

    Deterioration? Scared

    I am so sorry to hear this. I've had ME since 1989 and I have been up and down more often than a... oops, scrub that, if I put in the comparison I was thinking of I'd get censored... I've been bedbound and working full-time and everything in between. Only you can find your just-right point, but...
  5. Apollonia

    SARS-CoV-2 triggering autoimmune diseases

    If—and it's a big 'if'—that UCLA-led* study is borne out by larger studies, I wonder what that means for ME? And for all the people with ME (like myself) who have well-functioning immune-systems?—I mean the people who have had one cold every 5 years (or even less frequently) since they fell ill...
  6. Apollonia

    New article on "Pain Reprocessing Therapy"

    The study struck me as inadequate, especially small sample size; skewing to white educated population with low intensity pain, most still able to exercise several hours each week; lack of healthy controls; open-box placebo. I just wanted to know if anyone had had this treatment recommended to...
  7. Apollonia

    New article on "Pain Reprocessing Therapy"

    https://archive.is/7LFNU There is a link in the article to the new research; it can be downloaded here: https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2784694 Has anyone on PR received this kind of treatment?
  8. Apollonia

    Fibromyalgia: transfer of patient IgG antibodies produce FM symptoms in mice

    Obviously, these mice need GET and CBT. 😊
  9. Apollonia

    Dr Michael Fitzpatrick fights back

    That is a perfect précis of this patronizing piffle.
  10. Apollonia

    Dr Michael Fitzpatrick fights back

    https://archive.is/S4COu
  11. Apollonia

    Question on brain fog

    I have found the only thing that has improved all my symptoms is taking light exercise (just old-fashioned walking) whenever I can—3 or 4 times a week for half an hour. I started out with 5 minutes and worked my way up gradually. I am hoping to extend my walking time gradually too and I am doing...
  12. Apollonia

    What has helped you with sleep/insomnia - post links

    Reply to Dr Universe: Yes, that's the obvious way round. But my memory is of an experiment in which intake of caffeine was found to suddenly increase melatonin a couple of hours later—perhaps via or in connection with adenosine, as part of the body's homeostatic functioning? I'll keep on looking...
  13. Apollonia

    What has helped you with sleep/insomnia - post links

    I read somewhere that melatonin can be activated by caffeine. Have you looked into that possibility?
  14. Apollonia

    What Is Your Body Temperature? Rethinking 98.6

    I think it's important to note that scientists are now revising a single "normal" body temperature to a range, recognizing that it varies during the day and with sex, age, etc., while there is also evidence that the modern normal is lower than it was in the 19th c...
  15. Apollonia

    What Is Your Body Temperature? Rethinking 98.6

    Here is the method I use. It helps to use really cold water, from the fridge. 1. Soak two large facecloths in cold water. [If we are going through a heatwave I make sure to soak them, wring them out, put them in a plastic bag, and put them in the fridge an hour or two before bedtime.] 2. Lie...
  16. Apollonia

    ME/CFS Brain Stimulation Clinical Trial begins at UCLA - Health Rising 4/22/21

  17. Apollonia

    Why Women are More Prone to Long Covid (and ME/CFS)

    I don't think I fit this profile. I used to have very heavy periods but going on the pill did the trick and I had none of the other symptoms. I am not sure if menopause has made things worse or just getting on in years! I am on HRT and found I felt better during one short time on increased...
  18. Apollonia

    ME/CFS Brain Stimulation Clinical Trial begins at UCLA - Health Rising 4/22/21

    I signed up to take part in this study, but I don't think I will be able to take part, as no anti-depressants are allowed, even in the tiny doses I take (for sleep and pain, not for depression), and I found after a few nights I simply could not do without it. I may try instead to have the...
  19. Apollonia

    From wheelchair to walker...

    Dear Emma, I was wondering how you are doing and whether you have managed to achieve more mobility since posting. best wishes Cat
  20. Apollonia

    Has anyone tried Modafinil?

    I tried both versions (left and right handed) of Modafinil, together with Strattera, for about two years, and they certainly made me brighter and able to work for that period. No side effects unless I took them after midday, when I did have trouble sleeping. Since then I have stopped taking them...
  21. Apollonia

    Neurontin, Lyrica and generic versions gabapentin and pregabalin have been cited by FDA as being involved in breathing problems

    I've been taking Lyrica (both original and generic) for several years and could not function without it. I had taken Neurontin previously too, for pain, but Lyrica, coupled with Ultram, works better. I may not notice breathing problems, however, if any, as my condition has improved over the last...
  22. Apollonia

    From wheelchair to walker...

    Dear Emma, Isn't the best thing simply to use your walker in the garden to walk up and down (and up and down, and up and down, and... you get the idea), increasing gradually each day (weather permitting—of course this may be impracticable for you, and if so I am sorry to be giving irrelevant...
  23. Apollonia

    Sympathetic - Parasympathetic- or both?

    I had the holter test a few years back and the result was that my sympathetic NS functions at about one-third of normal, my parasympathetic NS at about 50% of normal. That is, both of them are under-performing, each to a different degree. It seems reasonable, therefore, that in another person...
  24. Apollonia

    Internal tremors, anyone?

    I'm not sure if I have the same feeling as you have all described. It certainly comes when I am most tired and have "overdone it", whatever it is, but I would not compare it to a vibration. The sensation is as if I were crumbling inside, falling apart internally (in my thorax and abdomen) over...
  25. Apollonia

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    Is any one trying to make this statistical critique public? How about getting 'More or Less' on Radio 4 and the BBC World Service to do a piece on it? Pedantry Corner: I know nothing at all about statistics, but I do know that the word 'criteria', like 'data' and 'media', is plural. The...
  26. Apollonia

    Bob Miller on hunger strike: support him by emailing FDA about Ampligen - decision imminent

    "Appolonia, it may not be your cup of tea, but others have been helped by it and approval of Ampligen legetimizes our illness instead of getting fed the CBT-GET crap, days in and days out. "If ampligen gets approved, it opens the doorto more reserch and drug development, and advances in the...
  27. Apollonia

    Bob Miller on hunger strike: support him by emailing FDA about Ampligen - decision imminent

    "Rather than the clinical trial data, I've been more impressed by the testimony of the many long-term, very sick patients, including doctors, who have responded very strongly to Ampligen and of the clinicians who have had many years of using Ampligen and have seen patients do well on it." With...
  28. Apollonia

    Bob Miller on hunger strike: support him by emailing FDA about Ampligen - decision imminent

    I am not going to support this action. There is no good evidence that Ampligen is effective: that it is safe is only half of what the FDA has to ascertain. Ampligen has been on the ME radar since one year before I fell ill with ME; it's been talked and talked about ever since then; and it still...
  29. Apollonia

    Facebook Phobia a CFS issue?

    I often wish there were other ways of supporting institutions, petitions, etc. than via Sheepbook or Witter, neither of which I'll use. Many times, having lent my support online, e.g. by signing a petition, I'll be sent an email thanking me and listing 'other ways I can help' whatever cause...
  30. Apollonia

    My leg gave out

    Jemal - Yes, they do; sometimes almost completely, adn they can vary a good deal even during a single day. On the other hand (so to say) my left hand is now permanently weaker than it was (I'm left-handed for writing, and use left and right hands indifferently for a number of tasks, so it was...