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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. Snow Leopard

    Parasympathetic activity is reduced during slow-wave sleep, but not resting wakefulness, in patients with CFS. (Fatt et al 2019)

    Yes, I often I have what I'd normally consider to be "refreshing sleep" - any hint of drowsiness is gone, yet all my other symptoms are the same.
  2. Snow Leopard

    Article Meet the Researcher: Interview with Dr. Erin Cvejic

    I appreciate the interview with a researcher I had not heard of before. But I must say, I don't find this approach (the sleep study) terribly compelling. HRV is a non-specific marker and the most common cause of lower HRV is due to lower cardiovascular fitness. This is particularly likely...
  3. Snow Leopard

    ME preventing antibody response to covid?

    It is quite unlikely that ME will lead to a lack of antibodies being formed against SARS-2. But negative results on serology tests can also be due to imperfect sensitivity. And despite people saying that 'oh just repeat the test, if the sensitivity is low', that doesn't always work if there are...
  4. Snow Leopard

    Is social media helpful or hurtful for people with ME?

    I have a love-hate relationship with social media - I don't like connecting "real life" identity with internet identities. I intensely dislike Facebook, use Youtube, despite the fact that it is run by a corporation who doesn't really care about people (many Youtubers are regularly screwed over...
  5. Snow Leopard

    New study finds vast majority of diseases have only a very small genetic contribution of 5% to 10% at most (so much for 23andme testing)

    BTW, The study was published in December. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0220215
  6. Snow Leopard

    MS study may have treatment implications

    Natalizumab apparently has an effect on fatigue and cognition in MS patients (albeit open label trials), I'm curious to hear from anyone who has been administered Natalizumab?
  7. Snow Leopard

    The Adenosine - Phosphatidic Acid Hypothesis

    Do we know that? Loss of erythrocytes cannot explain the 2 day CPET findings, namely a reduction in performance at the ventilatory threshold, but not necessarily any change in VO2Peak and blood volume. This rules out loss of erythrocytes as a cause, and likewise 'preload failure'. It surprises...
  8. Snow Leopard

    The return of Polio to the USA? Is paralysis being mis-diagnosed as psychiatric?

    They aren't being reported as cases, either to the authorities, or by the authorities whom are finding excuses to exclude them from the statistics. Notably, this applies to cases who are under the age of 15. I know from personal experience that my own experience of acute onset AFP (bilateral...
  9. Snow Leopard

    W.H.O. meets with Silicon Valley Tech Giants to Discuss Novel Coronavirus (COVID-19) and “Misinformation”

    The solution is to train the populace to no longer be gullible idiots who believe everything they see on the internet.
  10. Snow Leopard

    How to keep dopamine properly away from converting to adrenaline?

    COMT (Catechol-O-methyltransferase) deactivates all the catecholamines (including epinephrine). If someone had a hypothetical genetic disease of excessive conversion of dopamine to norepinephrine, inhibiting COMT would likely make things worse (due to excessive accumulation of...
  11. Snow Leopard

    How to keep dopamine properly away from converting to adrenaline?

    I'd kindly ask for you to take a step back and reconsider... Emotions and the "fight or flight" response are complex neuropsycho phenomena and cannot (and should not) be reduced to neurotransmitter reductionism like this, the functions of epinephrine, norepinephrine and dopamine are complex...
  12. Snow Leopard

    HHV-6 researcher Dr Bhupesh Prusty also finds "something in the serum" of ME/CFS patients

    Note that he said "on a path". The "path" most likely involves a method for filtration into different components (separated by size and potentially other chemical means), a means of testing whether the components have any noteworthy effects on healthy cells and then using various means of...
  13. Snow Leopard

    Why is nobody talking about this Enterovirus study?

    But we already have a name for autoimmune AFM: Guillain–Barré syndrome(s) (which is bilateral). Other rarer forms can be due to lesions or infarction in certain parts of the brainstem, cerebellum or spinal cord. The notable characteristic of the suspected enteroviral cases is that they are...
  14. Snow Leopard

    IDO Metabolic Trap Hypothesis Published Today

    Most likely IDO1. "Discovery of IDO1 Inhibitors: From Bench to Bedside" https://cancerres.aacrjournals.org/content/77/24/6795 Trials: https://clincancerres.aacrjournals.org/content/early/2019/02/15/1078-0432.CCR-18-2740 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6009946/
  15. Snow Leopard

    IDO gene - metabolic trap question

    No. He's just saying the SNP(s) alone are poor predictors of whether someone will later develop the illness.
  16. Snow Leopard

    IDO Metabolic Trap Hypothesis Published Today

    According to the speculative schematic in the paper, the excess L-tryptophan would lead to more being converted into serotonin/melatonin. https://www.mdpi.com/diagnostics/diagnostics-09-00082/article_deploy/html/images/diagnostics-09-00082-g002-550.jpg The manuscript states:
  17. Snow Leopard

    Psychosomatic vs chronic stress

    I've never suffered from chronic stress so I wouldn't know about that. But acute stress tends to reduce my symptoms, or at least I notice them less. Albeit the whole experience still negatively affects my mood (as such, I wouldn't like to maintain a state of constant stress).
  18. Snow Leopard

    is there any way or device that can help grow muscle or maintain it without exercise?

    Without exercise? Sounds like a holy grail...
  19. Snow Leopard

    A test for a disease is 99% accurate, and you test positive, so that means you've a 99% change of having the disease, right? No, very wrong!

    Tests for rare diseases are not given to just anyone, they are given based on clinical judgement, hence I would not have much confidence that "the chances of you having this disease given the positive test result are only 9%" is a reasonable estimate. But then you have to ask, where do the...
  20. Snow Leopard

    How many years before you had to quit work?

    0 years (Illness onset before working age). :(
  21. Snow Leopard

    BMJ May 29th: ME is 'trivial', not a real affliction and patients are 'weak-willed'.

    Simply mentioning that some people consider the illness to be trivial puts that message in people's heads. It doesn't matter what he claims his personal beliefs are, the fact is he is implying that 'considering the illness to be trivial' is a legitimate point. The possible association is implied...
  22. Snow Leopard

    BMJ May 29th: ME is 'trivial', not a real affliction and patients are 'weak-willed'.

    Have you ever heard the term "guilt by association"?
  23. Snow Leopard

    My ME is in remission

    All I can say right now is wow!
  24. Snow Leopard

    Research Re Exosomes and ME/CSF

    Cue the speculation. ;)
  25. Snow Leopard

    Reuters 13th March 2019: Article with Sharp, Wessely, Per Fink and co attack Dr Tuller and ME patients

    Kate Kelland not only wrote the mis-informed article about Cochrane 'withdrawing' the graded exercise systematic, she wrote the "Pushing limits can help chronic fatigue patients" article on the PACE trial back in 2011. As far as the unbalanced mischaracterisation of patients views in this...
  26. Snow Leopard

    Emerge Australia ME/CFS International Research Symposium March 12-15, 2019

    I wish I could attend. So close yet so far. There is one specific research question I'd love to ask the attending researchers (related the most relevant replicated finding so far, which incidentally was described by Robert Phair on this forum as "a classic in CFS research" yet few seem to be...
  27. Snow Leopard

    My poll about family members with ME. I have a small sample showing a pattern. I need more data to confirm.

    I chose "I have ME, but no close blood relation has ME or an additional health issue", I had to choose this option as the specifically listed health issues did not apply. However, a family member has type 2 diabetes, several immediate family members each have one of several different autoimmune...