• Welcome to Phoenix Rising!

    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. Marco

    Feel like ME/CFS has made me age faster

    Sedentary behavior, physical activity and cardiorespiratory fitness on leukocyte telomere length https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5209646/
  2. Marco

    Rt Hon. Jeremy Corbin MP, leader of the Labour Party, to give opening speech at IiME 2018

    Yeah - Tory funding cuts. We want more CBT and GET.
  3. Marco

    Sleeping sickness parasite may be skin borne

    This is a long but interesting article. Previous attempts to totally eradicate sleeping sickness have repeatedly failed for reasons which have baffled scientists. It turns out they may have been looking in the wrong place in assuming that the disease is (solely) blood borne and is down to the...
  4. Marco

    Perrin claims 86% success rate diagnosing ME/CFS

    Not endorsing this - just highlighting the report for the sake of completeness : https://news.sky.com/story/massage-technique-speeds-up-diagnosis-of-chronic-fatigue-illnesses-11125556
  5. Marco

    PEM from long car trip

    Yep. Long journeys; heat; mental exertion or even a 20 minute social phone call are enough to do it for me (as does physical exercise that isn't slow and steady though).
  6. Marco

    Potential benefits of the beta blocker "Propranolol"

    I was prescribed propranolol many years ago when I was having symptoms including severe heat intolerance that my GP thought might be due to stress/excess adrenalin (fair enough as a working hypothesis). I went from one extreme to another (freezing cold and couldn't function at all). I'd...
  7. Marco

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

    Interesting to note perhaps that both 'exemplary' PAMPs https://www.frontiersin.org/articles/10.3389/fimmu.2015.00422/full ATP http://www.brainimmune.com/innate-immune-system-senses-psychological-stress-atpp2x7r-inflammasome-nlrp3-cascade/ and HMGB1...
  8. Marco

    Autonomic nervous system function, activity patterns, and sleep after physical or cognitive challeng

    I'm looking forward to reading the full paper as this might partly explain the 2-day CPET results.
  9. Marco

    ME/CFS stopped with outbreak of autoimmune disease

    Strange, intriguing. A little like how some of us feel better on the rare occasions we develop a real cold. Perhaps it has something to do with the immune system having something specific to deal with which diverts it from whatever it was (mis)doing previously?
  10. Marco

    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    Could be. Although I'm generally not a fan of ever more strict criteria in all circumstances it would have been useful to know if these measures correlated with functionality. It does also highlight the problems of making straight group comparisons without publishing the raw data. In other...
  11. Marco

    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    Just a quick eyeballing of the figures suggests some 'outliers' in the CFS group.
  12. Marco

    Rituximab Trial - SMC Expert Opinion?

    @Jonathan Edwards Not hanging on the telephone then?
  13. Marco

    Rituximab Trial - SMC Expert Opinion?

    That I don't know. Just from previous reports I believe Oct 2017 was the unblinding but whether or not any results would be made public before publication (sic)?
  14. Marco

    Rituximab Trial - SMC Expert Opinion?

    I'm half joking/half serious here. I've been pondering this for the last few weeks given that Fluge/Mella were due to 'crack the codes' on the Ritux trial this month. Assuming that the trial results are positive I was wondering who the Science Media Centre would approach for an 'expert...
  15. Marco

    Guardian goes BPS on Fibromyalgia (Lady Gaga)

    Frankly I don't have any real problem with the notion that psychological issues can exacerbate symptoms. I know that psychological/cognitive/emotional stressors can exacerbate my symptoms to the point of PEM and I can think of several plausible mechanisms to account for this. Does this mean...
  16. Marco

    "Unrest" updates

    I get the impression that @Jonathan Edwards doesn't like Phillip Glass?
  17. Marco

    This helps me,,, but why -- [Cold showers/baths]

    Cold immersion (even dipping your face in ice cold water) is one technique for improving vagal tone - i.e; to switch the autonomous nervous system from the sympathetic fight and flight mode to the parasympathetic rest and digest. Perhaps that's helping?
  18. Marco

    Clinical Trial at Brighton/Sussex Hospital

    This could be an interesting study. Personally, if I were doing it; I'd be interested in how induced immune activation might impact on a comprehensive array of autonomic measures on the basis that immune activation via HMGB1 mediated microglial activation in the paraventricular nucleus of the...
  19. Marco

    The pathophysiology of fatigue in Parkinson's disease

    Needless to say they haven't cracked it but some interesting theories overlapping those around ME/CFS : The Pathophysiology of Fatigue in Parkinson's Disease and its Pragmatic Management [excerpt - my para breaks] There also seems to be quite a few studies using drug interventions (with few...
  20. Marco

    Gene variant linked to myalgia and statin use

    The story is a little convoluted but it seems some people are genetically prone to muscle pain and those with a variant of a particular gene involved in muscle repair are more like to suffer severe adverse symptoms associated with statin use ...
  21. Marco

    Ventilatory threshold may be a more specific measure of aerobic capacity than peak oxygen consumptio

    Interesting that Keller et al (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4004422/) found that in the 2 day CPET studies it was VO2-VT that dropped most on the repeat test and had greater power in discriminating ME/CFS patient from controls.
  22. Marco

    Simon McGrath blogs: Mark Davis finds the strongest evidence yet for ME/CFS immune activation..

    Thanks Jonathan. I've re-read that three times and I'm non the wiser. As for the quoted passage, you say you can 'envisage'a situation etc - but can you point to any examples or is this 'novel'? Secondly why do you feel this suggestion might be a good fit for ME/CFS; is it central to the...
  23. Marco

    Simon McGrath blogs: Mark Davis finds the strongest evidence yet for ME/CFS immune activation..

    Could you expand on this if you haven't done so already?
  24. Marco

    Simon McGrath blogs: Mark Davis finds the strongest evidence yet for ME/CFS immune activation..

    Mmmm. The devil is most definitely in the detail.
  25. Marco

    Simon McGrath blogs: Mark Davis finds the strongest evidence yet for ME/CFS immune activation..

    @Simon We need to bear in mind that both Davis' findings and the Ritux findings are preliminary. But assuming both pan out is there any way of explaining both i.e. does B cell ablation impact on T cell clonal expansion? One paper suggests it does in vitro but for CD4+ and not CD8 T cells ...
  26. Marco

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    I don't know what's in the pipeline or what leverage can be brought to bear - I don't need to know and I'm happy to sit back and let things take their course. But I'd also like to voice my appreciation for people like you who have no dog in the fight per se and also can't be hand-wavingly...
  27. Marco

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    Old-school investigative journalism seems to be a thing of the past for sure.
  28. Marco

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    I doubt Rupert Murdoch or the government (current and previously elected) are particularly interested in ME/CFS or PACE. Those promoting it and defending it are more likely to be found amongst those who've made a nice career for themselves in the real UK establishment - unaccountable public...
  29. Marco

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    Oh dear Jonathan. You really are looking in the wrong direction for those who shut down debate.