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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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Search results

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    Immunoadsorption to remove ß2 adrenergic receptor antibodies in CFS/ME.

    I am inquiring why plasmapheresis was not done alone since it is less expensive and more widely available, and no trials to date have this modality for CFS (that I know of). It would have also made for an excellent control group. Crossover just means a placebo group and the active group switch...
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    Immunoadsorption to remove ß2 adrenergic receptor antibodies in CFS/ME.

    Plasmapheresis depletes IgG globally so they were replenishing it after the trial had been completed. None of the patients completely recovered. They could have used a non-elution comparator as a placebo or saline vehicle with crossover at six months. The reason this was not done is because...
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    Neuroinflammation in the Brain of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    It requires more funding than the entire United States budget probably. Their older paper is available in English if you would like to read it.
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    Tofacitinib (Xeljanz)

    It could help the subset he described, because he has access to all their pertinent information. But it cannot be applied to a population at large. JAK-STAT inhibition creates an environment conducive to CFS, not vice-versa. The most promising failed drugs for CFS (Ampligen, Staphypan...
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    why aren't mono patients put on anti-virals?

    Threefold - evidence base didn't exist at the time and presently, ACV was never approved for that specific indication (and it never will be) so its off-label use is required, and I guarantee some newly graduated doctors do if they have taken virology. The licensing exams for doctors will have a...
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    How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

    Thanks for the update. Please start a new thread @dreamydays and I will answer your question there.
  7. I

    treatment for low NK cells -- Imunovir?

    If you have a moment, could you ask your physician why they do not infuse NK cells directly? If they are confident that it is a problem. It is Stanford.
  8. I

    Acetylcholine Induced MAJOR LONG-TERM FATIGUE!!!

    Because lowering estrogen will lower cholinergic transmission, in the brain, where it counts. This is not fool proof because the side effects of anti-E's are high too.
  9. I

    Acetylcholine Induced MAJOR LONG-TERM FATIGUE!!!

    Anti-estrogens.
  10. I

    Ponderings and speculations about purinergic signaling, in pursuit of a unified ME/CFS theory

    Apyrase is patented (a non-patented version would be eliminated too quickly from circulation I assume). It does not have first-in-human testing done yet, Astra Zeneca has the rights and they have not started recruiting for phase I for stroke. AZ will refuse an IND for CFS even if applied for and...
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    Ponderings and speculations about purinergic signaling, in pursuit of a unified ME/CFS theory

    ATP is the primary ligand for the receptor discussed here. Viral infection can cause dysregulation of ATP via intracellular calcium modulation.The usual suspects for CFS increase Ca2+ and ATP. These intracellular molecules are not modern drug targets. From Viruses as Modulators of...
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    Ponderings and speculations about purinergic signaling, in pursuit of a unified ME/CFS theory

    Instead of treating this point in the cascade, with suramin, which has a Ki antagonism for anti-P2x which there is no evidence is occurring in CFS patients more than every illness, why not take the direction of the original authors of a similar theory, or treat with NK or T-cells? Suramin is a...
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    How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

    Thank you for sharing. You did not notice an infusion reaction, correct? That was the most glaring mistake in the trial.
  14. I

    options for testosterone off-insurance

    Second compounding pharmacy. My shady for profit TRT clinic was only $200 a month. T alone was exceptionally rough, the entire treatment was, consider a very small dose of anastrozole weekly to see if you tolerate it.
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    The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis

    Is there a single unifying cause of depression? Multiple Sclerosis? These all have subsets but no known etiology. The leading idea, PDH certainly will not explain fast-onset CFS, they have not even attempted to reconcile it. I addressed this already, but it is critical to point out that...
  16. I

    The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis

    Its effect would be countered by the cortisol administered, and only one in a million B-cells are infected with EBV. Also, Rituximab depletes B-cells when the b-cell response to EBV is already suboptimal, further compounding the problem. You could do a lymph biopsy but it is not necessary...
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    What is your personal theory or understanding of ME/CFS?

    If it is anti-muscarinic antibodies at CNS synapses, that's really bad news. It would explain the gender imbalance in CFS, that's monoclonal therapy territory and not even at pre-clinical phase. Scopolamine and amantadine would not help because of their adverse effects. Depression researchers...
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    What is your personal theory or understanding of ME/CFS?

    CFS is due persistent viral infection in vulnerable circuits of fatigue detection leading to avoidance behavior, areas near the blood brain barrier which is defective due to an environmental insult. I am just going to repeat it until someone with money listens. There's leaky gut, autoimmune...
  19. I

    Dr Martin Lerner's abortive infection theory of ME/CFS

    Thanks for your welcome to the forum. I’m on my phone so this isn’t as lucid as normal. Sorry for the mix-up - yes, I’m glad Valcyte works for some but it is crude (both adverse and efficacy) and expensive. Roger, I was referring to suramin. The leading candidates for treatment in CFS are...
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    Dr Martin Lerner's abortive infection theory of ME/CFS

    Note that only one a million B-cells is infected with EBV at all, while native T-cell dysregulation (the genetic / environmental component) causes less clearance within the CNS compartment of EBV and proliferation of even uninfected B-cells. This is why Rituximab is not the greatest monotherapy...