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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. redo

    High-frequency rTMS for the Treatment of Chronic Fatigue Syndrome: A Case Series

    I wonder, with depression, do they use rTMS against the brain regions highlighted below? The PET images examined 22 cortical and subcortical areas. CFS patients showed a significant hypometabolism in right mediofrontal cortex (P = 0.010) and brainstem (P = 0.013) in comparison with the healthy...
  2. redo

    High-frequency rTMS for the Treatment of Chronic Fatigue Syndrome: A Case Series

    I tried following the link to the Spanish blog, but couldn't understand the language. Are you saying rTMS has been used on many CFS patients in Spain, and they've worsened? I would like to know more about that! I am thinking about trying it, but taking it slow, as discussed recently in this thread.
  3. redo

    High-frequency rTMS for the Treatment of Chronic Fatigue Syndrome: A Case Series

    Thanks a million for the advice, spacing them out. I haven't actually got an appointment, I am only curious what this treatment has to offer. Do you remember anything on how the procedure was, for locating the correct brain region? What I mean by that is that there are two ways. • With...
  4. redo

    High-frequency rTMS for the Treatment of Chronic Fatigue Syndrome: A Case Series

    Took it too far? I feel you! I've been on some treatments where I've thought that the worsening was temporary, if I'd ride it off I'd improve all in all. But only got way worse, all in all. Do you remember how many sessions you had until you felt worse? I am seriously considering rTMS, but am...
  5. redo

    High-frequency rTMS for the Treatment of Chronic Fatigue Syndrome: A Case Series

    Thank you for sharing, Jack! Can I ask you, were you given rTMS for depression or as an experimental CFS treatment? I have PET scans showing abnormally high metabolism in parts of the prefrontal cortex, and I am curious to whether rTMS could, well, stop parts of the brain running in high-gear...
  6. redo

    Complete remission of symptoms when I have hay fever - anyone else had this?

    Fascinating! A few years back I had an allergic reaction to something I drank or ate, and for some strange reason I felt better while the allergic reaction lasted. I've felt slightly better while having common illnesses also, such as things like the flu. I know it's an old thread, but have you...
  7. redo

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

    Now that's a fascinating collection of articles. Especially “Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders” and "Regulation of plasma histamine levels by the mast cell clock and its modulation by stress". I'll check up on them later. Thanks!
  8. redo

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

    The charts above were posted to show that mast cells have many tricks up their sleeve, not just releasing histamine. I haven't had the energy to sign in to these forums for some months. But if you've read the article you link to, is their "main PEM immune hypothesis" (if they have one)...
  9. redo

    If you've got a 'positive' tilt table test, how do you feel lying down?

    I found this today, which is a more likely explanation for POTS, at least in my case, than intracranial hypotension:
  10. redo

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

    When I wrote somewhat like asthma, I meant that we know exercise triggers an immune reaction in some ninety percent of asthma patients. Their airways tighten. So it's plausible that another type of immune reaction may be triggered by exercise in ME/CFS patients. If the mast cells are activated...
  11. redo

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

    There are other people better fit to answer that than me. I haven't studied the literature enough to know whether there is either flimsy or sound evidence of the increase in incidence. Anyone who has an opinion on this, please chime in. When it comes to the of understanding "syndromes" like...
  12. redo

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

    Yes, that's my impression too. Many have both MCAS and ME/CFS, but alas there's not a lot of concrete science. When it comes to MCAS and ME/CFS it should be fairly easy to do blinded studies: if patients know what makes them worse (but not horribly worse) one could then put it in a capsule and...
  13. redo

    Have you taken a PET scan? If so, was it "negative"?

    I am awaiting the results of my PET scan. I am wondering if anyone (surely there must be) who've taken a PET scan and had it come out without any obvious signs of illness? If you have, about when did you take the scan? (The machines have gotten more sensitive, so perhaps an old "negative" PET...
  14. redo

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

    If the hypothesis held true that people with ME/CFS are "only mentally ill and stressed", then we would expect that the gender ratio of depression and ME/CFS would somewhat match. The gender ratio when it comes to depression is 1.7 women for every man. But the gender ratio of ME/CFS is 4 women...
  15. redo

    plan for no cure and hope you're wrong

    Hear, hear. Your post made me think of this Dickinson poem, which gets the gist of what I feel about hope. “Hope” is the thing with feathers - That perches in the soul - And sings the tune without the words - And never stops - at all - And sweetest - in the Gale - is heard - And sore must be...
  16. redo

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

    Okay. So I've looked around a bit, and see that a common denominator of extreme stress, giardiasis and viruses is that they can activate mast cells. Mast cell activation by stress. https://www.ncbi.nlm.nih.gov/pubmed/16110169 Viruses. Scroll down to "How are Mast Cells Activated by Viruses?"...
  17. redo

    histamine testing

    Are these tests and ordinary GP could order. Say, if I went to my GP and asked for this, and collected urine for 24 hours and turned it in to the local hospital for testing, then it should be fine?
  18. redo

    What are the lab tests used to help detect MCAS?

    I see Wikipedia lists this as useful when making a MCAS diagnosis: But, where's the best place to get tested for it? If there is a reputable lab that any doctor would accept the results from, then that's best - naturally.
  19. redo

    Appointment regarding MCAD with Dr. Afrin 1/26/17

    I've had the same experience using famotidine, which is somewhat similar to Zantac. I took it at 6 pm, and didn't feel sedated or anything, but after taking it my sleep pattern totally changed. I used to get to sleep at 4-5 am, but now I get to sleep a little over midnight. And I used to get up...
  20. redo

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

    I'll make a separate thread of this some time later this year. I think we should add these to the list. Why so many ME/CFS patients also have MCS Why so many ME/CFS patients also have IBS Why ME/CFS patients get PEM If an overactive histaminergic system is at the core of ME/CFS then mechanisms...
  21. redo

    ME/CFS is a mast cell disorder (hypothesis)

    Can you remember which antibiotics this were? I got worse following two types of antibiotics used against lyme. But it wasn't an immediate thing. But it lasted for a decade or so. I get worse from car travelling as well, though I haven't made sense of it. It's only since January this year I've...
  22. redo

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

    I've just read this review of MCAD and found this quote interesting. So anything that may strongly activate the immune system can make MCAD worse. This is in like with what's been written about triggers and ME/CFS.
  23. redo

    ME/CFS is a mast cell disorder (hypothesis)

    Sorry to hear that. Could you let me know some of the background regarding the two severe reactions? This is probably unrelated, but I had a severe setback when trying ARVs (not regular side effects), I've also had a severe setback on roaccutane. Maybe it was my body reacting allergically to...
  24. redo

    New Treatment for Schizophrenia?

    Thank you for the links, and thank you for your post. I thought the same as you. Perhaps Phenergan helped that patient because of its antipsychotic effect. And the antihistamine Alimemazine is structurally related to an antipsychotic. So, perhaps it's just an antipsychotic effect. So I've...
  25. redo

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

    Here's a study linking ME/CFS with increased mast cells (which releases histamine). But I think they would have got more clear results if they looked in the spinal fluid instead of peripheral blood. There may be a link between common allergies (which are histamine reactions in front of the...
  26. redo

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

    Think of the bullet point list as "what any ME/CFS hypothesis must seek to explain". Whether that be a hypothesis focusing on methylation or XMRV or HPA axis or whatever. Take the XMRV hypothesis for example. It would be a strech to say why such an hypothesis could explain all the four points...
  27. redo

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

    Thank you for the link, Prefect! It may very well be that ME/CFS sufferers of previous centuries were given a neurasthenia diagnosis. However, I stand by my claim that there are more people who are ill with this now than say fifty years ago. If anyone has data to back that up, or refute it, then...
  28. redo

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

    The (weak) antihistamines have made my symptoms better, but it's far from a cure. What has helped the most is Alimemazine. I began using it to get sleep, and I megadosed for many weeks, and without expecting any such effect, my concentration improved, and some brain fog went away - other...
  29. redo

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

    Perhaps. I certainly think t-cell activation should be looked into. Tysabri, which wipes out t-cells helps MS patients, and it might help ME patients as well. Who knows. There ought to be a pilot study. By the way, thank you for bringing up various types hypersensitive reactions (Type I, IV). Do...
  30. redo

    New Treatment for Schizophrenia?

    Did you try famotidine? I have emotional flatness and anhedonia as well. Well, all the feeling isn't gone, but it's like where there once was a glass of water, there is now only a drop. Same goes for the feeling in the skin. My whole body is really numb, from top to toe. In more than a decade...