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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. James_B

    Cytokine signature associated with disease severity in chronic fatigue syndrome patients

    Today a test may be set up if one stay of D-vit & B12 for a week and take a screening of what we know Activin, Lipin, TGF-beta, B-cell, T-cell, D-vit & B12... May show a good picture. Use a bigger net so to say.
  2. James_B

    PACE trial commentaries in the Journal of Health Psychology to be made open access

    Just wonder, is the JoHP the top channel for psychiatrist like the Lancet?
  3. James_B

    Recurring dream

    Since I fell I have had a recurring dream. It is a dream with me having companion with a pet or cuddle with an animal. It is extremely affectionate. Almost aggressive. Usually it is a small bird or a small dog. Very strange. Is there anyone else who has this phenomenon? Take care
  4. James_B

    Are seizures related to ME?

    Interesting, your post. I was one week ago in the same situation and spent the night in observation. My paralyses was on the left side, and only for 10 sec, when i was trying to sleep. I think it is a energy (synapse) disturbance in the brain, probably the right side in this case. ME/CFS comes...
  5. James_B

    Spontanious healing

    That was just a long time example. Anyway in a facebook group i am in sometimes people speak about periods of no light no sounds and also that they have gone past those periods and can do more things now. But it is more of a reflection over 10 to 12 yrs.
  6. James_B

    Spontanious healing

    Yes the problem is that there is no bio marker (yet) and there is no one for sure know what those who recover had.
  7. James_B

    Spontanious healing

    I formulated it wrong. It's not the best hope. What I mean was that it is an interesting phenomenon that for some lucky occurred if you believe the Wiki. Great mystery is it.
  8. James_B

    Spontanious healing

    Hi! Concerning ME/CFS. What we can learn is that some heals spontaneously. This is probably the best hope we have. You often hear about a sudden onset. As for me, one day i woke up and, "shit what is this". We just have to hope for the reverse mechanism. Do you know someone who spontaneously...
  9. James_B

    White blood cells

    I will not say one hundred % but I believe it is this state that is about to enter: https://en.wikipedia.org/wiki/Agranulocytosis Could it be because of Gabapentin? There is nowhere specifically that tells they lowering of white blood cells? found a link that tells the opposite. Present usage...
  10. James_B

    White blood cells

    Ok, was it painful? they say bones get harder by age.
  11. James_B

    Tribunal was right to order release of PACE data: Prof Jo Edwards

    Sorry for my bad English but was the suspicion right that patients did not have ME/CFS or was the PACE study right that PACING is good for ME/CFS? :)
  12. James_B

    Does we really need "CFS"?

    This case don't need what we are. It needs what we have. People will learn, Everybody know ms, als, hiv ocd pms etc. And if they don't understand two letters, its ok because it leaves no room for own fabrication, judgement and gossip. :)
  13. James_B

    Flabbiness of the tissue

    That may also be a bio marker! I eat after the clock at every 3rd hour. Also never hungry. Foodgasm is gone unfortunate.
  14. James_B

    Flabbiness of the tissue

    I wonder if this is linked to PEM or a static phenomenon? My arms can hit some hard PEM also.. Hard to even lift them at that point.. That may be a case of flabbiness also.
  15. James_B

    Flabbiness of the tissue

    Yes, as the headline, "Flabbiness of the tissue" is this common? It may be a good "bio marker" http://www.stuff.co.nz/national/health/83312267/international-mecfs-conference-airs-exciting-research-prospects Blood samples don't say much for us but these are easy to check: Flabbiness of the...
  16. James_B

    White blood cells

    Hi everybody! What is the white blood cell signature for ME? I have one of the family(don't remember which one) at 1.0 but they should be from 1.5 + I wonder if ME does this? I am not so eager to get a spike into the hip bone for testing this. Just wondering. :) Take care!
  17. James_B

    New Video on ME/CFS: "MIND THE ABYSS"

    I really like this first part. So strong. Many speak of this sudden onset phenomenon. And I want to ask you if anyone have heard of a "Sudden Offset"? From a full Canadian criteria state (without medication).
  18. James_B

    Does we really need "CFS"?

    Just asking you guys. If we have those three: Myalgic Encefalomyelitis Occupational burnout https://en.wikipedia.org/wiki/Occupational_burnout Depression (lack of interest in doing anything) Does we really need "CFS"? I think we should stop using that word as far as we can in any ways. When...
  19. James_B

    Are seizures related to ME?

    An old post but this is exact like for me. Just strange! The jaw starts shaking fast (1 inch). Can feel it when waking up if in a weak period. Epilepsy is in the outer parts of the brain. Almost everywhere "flashing" energy between neurons. Maybe this is a lead to go on.. I think the problem is...