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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. MikeJackmin

    D RIBOSE

    Start slow - you want to work up to a full dose over a period of days, or it can cause stomach upset.
  2. MikeJackmin

    Pharmacological treatment of patients with chronic fatigue syndrome

    I normally wouldn't post this, it's a Russian paper currently unavailable in English, but it seems interesting nonetheless. Results were measured, in part, with a test of "exercise tolerance (cardiopulmonary exercise test with gas analysis)": [Pharmacological treatment of patients with chronic...
  3. MikeJackmin

    Experiences with sleep apnea treatment amd ME/CFS

    The CPAP can take some adjustment but it is more than worth it. 'Moderate' sleep apnea is bad. I think it would be almost physically impossible for you not to feel significantly better once you stop being hypoxic at night.
  4. MikeJackmin

    Fever without a fever

    I used to get this too. It felt, to me, exactly like a fever. Id ask somebody to touch my head and it felt to them exactly like I had a fever. And then the thermometer would read maybe 99F.
  5. MikeJackmin

    Are there skills from your education or career that have helped you as an ME/CFS patient?

    I used to be a computer programmer, and there was a common joke in our world that the best programmers were fundamentally lazy people; give them a difficult task, and rather then just go ahead and do it, they would sit back and find an easier way. Solving problems in the unexpected easy way is a...
  6. MikeJackmin

    Dr Cheney looking into low dose oxygen therapy at night

    One patient? Three night's sleep?
  7. MikeJackmin

    Any simple pleasures you refuse to give up?

    A liter of very good coffee with breakfast every morning. Long hair (a crew cut would so so much easier to maintain). Cats and weed are on the list too, although they both seem to help rather than hurt.
  8. MikeJackmin

    Spread of EBV to ectopic lymphoid aggregates may be the final common pathway in CFS pathogenesis

    The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS Email the author Willy Eriksen Domain for Mental and Physical Health, Norwegian Institute of Public Health, Box 4404 Nydalen, 0403 Oslo, Norway Abstract According to the hypothesis...
  9. MikeJackmin

    Queensland Government: Gold Coast researchers make chronic fatigue breakthrough

    Not really a breakthrough, but not crap either. It's a 'maybe'. Might prove to be a big deal, and it might not.
  10. MikeJackmin

    Cook, Light, Light, Broderick et al: Neural Consequences of Post-Exertion Malaise in ME/CFS

    If you want to induce PEM, do the exercise two days in a row. Everything becomes much more obvious after the second day.
  11. MikeJackmin

    Interesting Post About New FDA Comminsioner

    "As someone who has written about FDA reform for many years it’s gratifying that all of the people whose names have been floated for FDA Commissioner would be excellent, including Balaji Srinivasan, Jim O’Neill, Joseph Gulfo, and Scott Gottlieb. Each of these candidates understands two important...
  12. MikeJackmin

    Treatment options for chronic brain fog and inflamed throats everyday?

    CFS is usually (or always, depending on the definition used) associated with a peculiar symptom called Post-Exertional Malaise (PEM). PEM usually makes itself known by making you feel lousy a day or two after excessive activity. Many people who develop this have no idea what's going on; they...
  13. MikeJackmin

    Treatment options for chronic brain fog and inflamed throats everyday?

    The number one treatment of most CFS symptoms - including brain fog and sore throat - is rest. This means a significant reduction in both physical activity and mental effort. If you can try it for for a few days and you start to feel better, then you'll know.
  14. MikeJackmin

    No PEM with new medication

    Good writeup here: https://en.wikipedia.org/wiki/Nimodipine
  15. MikeJackmin

    Any remedy for dry eyes?

    Applying heat to the eyes works wonders. My eye doctor explained that the integrity of the 'tear film' of wetness over the eyes depend on the presence of a special oil thats present there. As we age, our eyes cool just enough to cause this oil to congeal. 30 seconds use of a warm pack will...
  16. MikeJackmin

    Push crash cycle, how to stop?

    Well, you can't stop the crash, so stopping the push is pretty much all you have to work with here. Part of it is a psychological battle; boredom plus discontent plus anxiety creates a toxic mess that is very hard to contain. Part of it is a matter of technique; there's a big differences...
  17. MikeJackmin

    Cornell University CFS research Sept 28, 2016

    Here's the actual study: https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-016-0171-4
  18. MikeJackmin

    PACING (a question)

    I like the metaphor of the person with a poorly-running car, no mechanical training whatsoever, and a hammer is his only tool. He's not going to make the engine run better, but he can certainly make it run a lot worse. Pacing is like putting the hammer away. It won't fix anything, but it will...
  19. MikeJackmin

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    Well, consider the classic peanut or bee sting allergy that can kill you with an entirely unnecessary anaphylactic reaction. It's clearly maladaptive, but it's closely tied in with very useful functions, and not likely to go away any time soon. I think that just about any auto-immune disease...
  20. MikeJackmin

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    Not every trait which is preserved is adaptive. Some vestigial traits are not costly, or are only occasionally costly, and they can remain stable over time because other, more useful traits share some of the same pathways. Another way to look at it is that our illness might be nature's way of...
  21. MikeJackmin

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    If these new insights help explain the mechanism of action of rituximab, I wonder if they imply a greater risk than we might have appreciated.
  22. MikeJackmin

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    Oh, I do agree our activity limitations might well be protective. I was thinking in terms of this state being an adaptive response to an environmental threat, which makes it seem like more of a throwback than a useful tool.
  23. MikeJackmin

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    I wonder if the word 'vestigial' might be more appropriate. It certainly does not seem terribly adaptive in its current form.
  24. MikeJackmin

    Mirror: Experience what it's like to suffer from CFS in free video game

    If you download a program from GameJolt, you are trusting them not to include spyware or adware or any other sort of invisible nastiness. Some download sites pay their bills that way. I would't trust it myself, sorry.
  25. MikeJackmin

    Herpesvirus 6 & 7 as biomarkers to distinguish between physiological and pathological fatigue

    Just guessing, but perhaps this activation is something that is normally triggered by the regular cycle of exercise - fatigue - rest - recovery. Those with pathological fatigue have fatigue that exists outside of this cycle, which is caused by other things, so it might make sense that the...
  26. MikeJackmin

    Herpesvirus 6 & 7 as biomarkers to distinguish between physiological and pathological fatigue

    I understood it to mean that the biomarkers could distinguish between physiologic fatigue - normal fatigue, that resolves with rest - and pathological fatigue, which is abnormal and not resolved by rest.
  27. MikeJackmin

    Herpesvirus 6 & 7 as biomarkers to distinguish between physiological and pathological fatigue

    Full Title: Human herpesvirus 6 and 7 are biomarkers for fatigue, which distinguish between physiological fatigue and pathological fatigue. Biochem Biophys Res Commun. 2016 Jul 7. pii: S0006-291X(16)31125-1. doi: 10.1016/j.bbrc.2016.07.010. [Epub ahead of print] Aoki R1, Kobayashi N2, Suzuki...
  28. MikeJackmin

    Chronic chest pain

    Costochondritis has become a reliable symptom for me as well. I can confirm to my satisfaction that it's not a heart attack by pressing on the seam between my sternum and my ribs with my fingertips. If it hurts, and it hurts in the place that's been bothering me, then it's OK.
  29. MikeJackmin

    Severe sleep issues resolved with resistant cornstarch

    I eat a large bowl of cheerios with rice milk about 2 1/2 hours before bedtime. I believe it is of considerable help.
  30. MikeJackmin

    Euthanasia

    This is a tricky topic, and a valid one. I like to make a distinction between euthanasia and suicide, thinking of them as opposite ends of a spectrum. The furthest end of the euthanasia spectrum is exemplified by person in full command of their faculties and in love with life, untroubled by...