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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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  1. jimells

    (Video) OMF Scientific Advisory Board Member Mark Davis, PhD, Presents An Update on ME/CFS Research

    @Janet Dafoe (Rose49) Was Dr Theoharides able to convince anyone at the recent Invest in ME Research Conference that mast cells are much more than "an appendix of the immune system"? [1] A patient report from the conference on Dr Theoharides' lecture seemed rather muted. The ME Association...
  2. jimells

    Research on what people with ME/CFS want from their GP?

    Doctors could start by having a quiet place for us to lay down when we get to their office. I had to threaten my primary care provider with the magic words "I am disabled and need an accommodation" before they would take seriously my orthostatic intolerance. Fear of ADA lawsuits tends to grab...
  3. jimells

    ER refused to treat me

    Most doctors are completely ignorant regarding mast cells - they only think about mast cells in terms of anaphylaxis, angioedema, and hives. When a person doesn't have those symptoms, they have a very steep hill to climb. Many or most of the symptoms you mentioned can be caused by mast cells...
  4. jimells

    OMFScienceWednesdays-red blood cell deformability in ME/CFS

    and extracellular ATP can activate mast cells. Additionally, those of us with hyperadrenergic POTS have increased norepinephrine, which causes vasoconstriction in the brain, gut, kidneys, hands and feet, etc. Norepinephrine is one of the 200 mast cell mediators. So we are looking at a very...
  5. jimells

    Why ME/CFS is a result of the histaminergic system in overdrive

    Thank you for this link. I didn't realize this article actually mentions mast cells: I have found Benadryl (diphenhydramine) to be helpful for sleep - more helpful than trazodone. Since it crosses the blood-brain barrier like other early anti-histamines, it can effect the mast cells that I...
  6. jimells

    Why ME/CFS is a result of the histaminergic system in overdrive

    I'm sure that for me, just waking up or standing up activates mast cells. For example, before I started anti-histamines, just standing up was enough activity to cause widespread itching. Another example: taking a shower caused itching. Nearly every day around 4 AM I would waken with night...
  7. jimells

    Should I suggest Pots to the GP based on this ?

    @LaCe10 I am sorry to hear how sick your daughter is. It must be extremely difficult for both of you. I'm also sorry to say that your biggest obstacle will be finding a competent physician. After 15 years of illness, I am still looking, or rather, I have given up hope of ever finding one...
  8. jimells

    Medically Unexplained Symptoms: A Treacherous Foundation for Somatoform Disorders?

    The promoters of psychosomatic illness appear to have a very strong belief in its existence. Presumably they also have superior intellects, given their long lists of degrees, titles, awards, and accolades, in addition to their insufferable arrogance. It should be child's play for people so...
  9. jimells

    IVIG Treatment

    :thumbsup: I've given up the idea of ever finding an amazing doctor. Before I became homebound I was bounced around from one specialist to the next. None of them had a clue. As far as I can tell, there isn't a single doctor in the entire state that knows anything at all about my illness or any...
  10. jimells

    ME/CFS is a mast cell disorder (hypothesis)

    All three files opened for me. Maybe they only work on Linux? The original file was 26 MB, so I had to split it up, then try to upload again, and again, and again, because although the upload limit is supposed to be 10 MB, the upload dies even when Linux reports the file size as 9.3 MB. Grrrrr.
  11. jimells

    ME/CFS is a mast cell disorder (hypothesis)

    Here is the document nanonug linked to at the beginning of the thread: Systemic Mast Cell Disease: An Update - L. Afrin, M.D.
  12. jimells

    Rituximab Phase III - Negative result

    I suggest they might want to look at the role of mast cells in ME. Mast cells behaving badly can cause an incredible array of symptoms. A Pubmed search on "hyperemia and mast cells" turns up over 80 articles. There is a substantial body of research on mast cells. They can cause most or all of...
  13. jimells

    Peter White gets set to speak at Swiss Re Insurance Medicine Summit 2017

    And successful treatment of hyperadrenergic POTS with anti-histamines is simply a "placebo response" and further proof of the "Power of Mind over Matter and Common Sense". Studies such as "Hyperadrenergic postural tachycardia syndrome in mast cell activation disorders" obviously have serious...
  14. jimells

    Cytokine signature associated with disease severity in chronic fatigue syndrome patients

    I'm not sure if this answers your question, but TGF-beta "inhibits the production of pro-inflammatory cytokines", according to Bennett 1997 (cited in my previous post): Hmmm, we are still left with the question of whether TGF is "the cause" or a downstream effect. We really, really need to...
  15. jimells

    Cytokine signature associated with disease severity in chronic fatigue syndrome patients

    From 1997... https://www.researchgate.net/publication/14131133 I keep digging through the headline hype with my manure fork trying to find the pony, but so far it seems the study only tells us what we already knew. How can it be that 20 years later we *still* don't know the source of the TGF...
  16. jimells

    Cytokine signature associated with disease severity in chronic fatigue syndrome patients

    Mast cells release TGF-beta. (A Pubmed search on 'transforming growth factor and mast cells' yields 500 studies.) Why is there so little interest in mast cells, especially considering how many ME patients have mast cell problems?
  17. jimells

    Unknown PACE-trial advocate tries to block JHP issue dedicated to the trial

    It almost doesn't matter if Regius Professor Sir Simon was involved with pressuring JHP or not. The PACE boil is about to be lanced, and he will certainly end up covered with puss. Good luck cleaning up the mess, Sir Simon. I'd play you a tune on my tiny violin, if I had the strength.
  18. jimells

    Warm weather is OI / POTS nightmare!

    I take 5 mg ceterizine twice a day and 100 mg cimetidine early AM. The H1 blocker is the most important for me. I think the H2 blocker helps some - not exactly a ringing endorsement - but not when it causes heartburn.
  19. jimells

    Worsening symptoms with MCAS meds??

    My impression is that many mast cell patients have to trial any number of medications to find the ones they are not allergic to. I am highly allergic to Chlorphenamine, an early H1 receptor anti-histamine. It caused immediate severe cramps and diarrhea. The pain was so bad I seriously considered...
  20. jimells

    What if ME is simply brain damage after encephalitis?

    I no longer have POTS crashes that send me to the Emergency Room, but I would not say that it is gone. Rather, it is now well-controlled. Just yesterday I had a mild episode a few hours after I ate a few peanuts. I don't want to believe that I can no longer eat them, so I had to try again - and...
  21. jimells

    What if ME is simply brain damage after encephalitis?

    Hmmm, 74 posts and not one mention of Naviaux's Cell Danger Response theory. I wonder why? I have found his model to be very useful in understanding my own illness and what causes most (all?) of my symptoms secondary to the core inability to sustain activity. Extracellular ATP is the key...
  22. jimells

    Cholesterol levels poll: pls answer even if they're normal!

    I can't answer the poll as I have no idea what my cholesterol levels are, and I have zero interest in finding out. There is plenty of evidence that statins cause harm. Where is the evidence that statins extend life / prevent cardiac events? Look closely at the TV the next time there is an...
  23. jimells

    The Mental Elf: A PACE-gate or an editorial without perspectives? Kjetil Gundro Brurberg

    The list of pharmaceutical companies successfully prosecuted for fraud and patient harm (including death) is very, very long. How is PACE any different - aside from having disability insurers and government agencies as protectors?
  24. jimells

    Canada: pre-announcement of a grant for planning and dissemination for ME

    This is just another public relations campaign: "See, we are having meetings and planning to make a plan. Now go away." Not a nickel will go to fund actual research while scum like Shorter enjoy institutional support. A sensible and productive strategy would be to fund an already existing...
  25. jimells

    Warm weather is OI / POTS nightmare!

    I have found cetirizine to be a "miracle drug". Histamine causes vasodilation and lower blood pressure - this is what happens in anaphylaxis. Fortunately my body responds with a big release of epinephrine/norephinephrine - the same stuff used in epi pens by people with anaphylaxis. The elevated...
  26. jimells

    What are seminal studies in ME research?

    It means that a one-day exercise test can not discriminate between ME patients and deconditioned controls - it takes another exercise test on day 2 to see differences between the groups. Hyperadrenergic postural tachycardia syndrome in mast cell activation disorders. This is the most...
  27. jimells

    Puzzled About POTS

    For some of us, mast cell activation triggers an excess of epinephrine/norepinephrine, which causes symptoms including tachycardia, cold, clammy and discolored hands and feet, shaking, sometimes elevated blood pressure, etc. I had limited success at controlling POTS with florinef, alpha...
  28. jimells

    Disabled claimants in UK to be told to get a job in 2 years or face a year's sanction.

    What need is there for charity? Are there no prisons? Are there no workhouses? In the "Old South" the work coach was known as a "cracker" - the person who cracked the whip until the slave obeyed or died. "Work coach" sounds much more civilized, almost like the petty bureaucrat is actually...
  29. jimells

    Trial by Error: The NICE guidelines, and more on the CDC

    That's because the Policy of No Research hasn't changed - we are simply being managed. It is nearly two years since Collins' claim of a new policy, and all we have so far from CDC is a few changes to a website. Reeves and Straus are dead, but their underlings and associates (Unger, Boneva...
  30. jimells

    Trial by Error: The NICE guidelines, and more on the CDC

    When the first lawsuits against the tobacco industry were filed, I'll bet loads of experts told the plaintiffs they could never win. I recall that initial actions failed - until plaintiffs started winning. Then state Attorneys General smelled the pot of gold, and everyone got on board the gravy...