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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. P

    Pineapple Fund donates $50k to ME Action

    If I could I would high5 Pine so hard that HE would be the one to get the PEM.
  2. P

    POLL: In the first 6 to 8 years of your ME/CFS, did you get slowly worse, better or remain stable?

    Don't we have the potential for a large selection bias here because anyone who has been ill for long enough and is browsing this forum pretty much by definition will not be one of the lucky ones who recovered enough to return to work (apart from the odd straggler)?
  3. P

    Transforming growth factor beta (TGF-β) in adolescent chronic fatigue syndrome

    Are plasma levels the most relevant thing to look at here? I vaguely remember Prof Edwards commenting that tgf-b is used to somehow mark cells for a longer period of time (if I understood correctly), so depending on how this stuff works (I have no clue obviously), maybe there are bouts of...
  4. P

    Making yourself sick to feel better?

    Thanks for making this connection! This is completely true for me as well. On the topic at hand, I did actually gamble with this concept a few times when close friends were a bit flue-y and I would respond 'cool, wanna hang out?' The problem with this seems to be that this was good for social...
  5. P

    Voices:Bristol Uni. both denies and supports Prof Crawley in her career enhancing “heroic vict

    On a side note, would a C&D-letter even do anything if it was ever sent? I have ever only seen David Tuller scrutinize the work he writes about on a factual basis that could have been answered by simply addressing questions in a proper manner, and he has been - in my opinion - overly nice to the...
  6. P

    Professor James Coyne commenting on poor British and Dutch fatigue research

    Doesn't prove he got paid a bounty to advise the way he did though, just provides support for the notion that he is ignoring medical evidence in his practice and is therefore unfit to advise insurers/DWP. Maybe someone who is in contact with Professor Coyne could ask him directly where he got...
  7. P

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

    I don't understand this topic at all so I do not know if it is worth bringing this up, but someone who is selling this stuff claimed elsewhere: He cited https://www.ncbi.nlm.nih.gov/pubmed/21129239 as another example for research finding no bioavailability, and...
  8. P

    Dr Phil Hammond talks to Jen Brea about Unrest this morning on Radio Bristol

    Oh come on, as if they wouldn't just lie about it when pressured. Or at the very least have a recruiting process of 'So, you say you're tired all the time? You must feel even worse after exerting yourself? Allrighty then, box ticked' and then claiming that all their patients have textbook PEM...
  9. P

    25 Oct E Crawley speaking at Better Science Better Data event......

    Umm... is anything documented about this? That's... holy shit. I mean, it isn't surprising given the circumstances, but still - if she actually drove someone to suicide she needs to go to prison. And if it actually is several people (the tweet uses plural!), she definitely needs to stay there.
  10. P

    Dr Phil Hammond talks to Jen Brea about Unrest this morning on Radio Bristol

    Yeah, I just wanted to say if we want to seriously start to take apart the magenta stuff we probably should have that discussion over in the respective thread so it isn't 'buried' here and overtakes the discussion of the interview. It is good that you brought it up here for context :-). It is...
  11. P

    Dr Phil Hammond talks to Jen Brea about Unrest this morning on Radio Bristol

    Okay, I guess I see what they are trying to do then. And I also probably see why they may be going to fail to deliver something worthwhile: If one wants to measure 'general' activity vs 'structured' exercise, it is difficult to keep the two apart, especially when dealing with prepubescent kids...
  12. P

    Dr Phil Hammond talks to Jen Brea about Unrest this morning on Radio Bristol

    So literally anything objective is intentionally disallowed? Do they give any reasons for that apart from words they made up for this specific situation (i.e. 'this is a behavioural intervention, what this means depends on what would suit us in any given context')?
  13. P

    Professor James Coyne commenting on poor British and Dutch fatigue research

    This is insane (referring to the first minute of this video). Can anyone find something worthy of citation that provides evidence for what Coyne says about PDW being paid bounties for getting people off benefits without curing them? This is way beyond 'normal' levels of CoI. Him stating that he...
  14. P

    Jen Brea and Unrest make it into the BMJ as an opinion piece

    Hmm.. yeah, you're right about that I guess. The way I read it the author of this piece wanted to say that it does not matter whether it is a mental thing or not, because that would not imply one would gain control over it. I think this is a really good point that needs to be understood by the...
  15. P

    Exercise therapy is a beneficial intervention for chronic fatigue syndrome (PEDro synthesis)

    Sometimes I do wonder really how hard it is to look up the defining core symptom of an illness you pretend to study and gather the knowledge as to what the very words you use mean. This is, again and for the umpteenth time, not CFS as in ME/CFS, but more likely some random assortment of...
  16. P

    False hope?

    Within a decade? I would say so, yes. Suramin is a possibility that might be available to us in 10 years time. Or maybe another antipurinergic drug that has yet to be developed. Apart from that, there are quite a number of people who had success in some way at least mitigating symptoms to a...
  17. P

    Jen Brea and Unrest make it into the BMJ as an opinion piece

    Keith Geraghty is obviously on point with that, but is it realistic at this point in time to expect the bmj to publish something that really tackles the sheer amount of iatrogenic harm and abuse that has been going on in depth before the 'general public' of bmj readers have even caught up to the...
  18. P

    "Unrest" updates

    Isn't the fact that this comedian even attempted to do this basically an admission of 'guilt'? If he stood by his work he would not bother to even attempt this. It is hard to see how the context in which his joke is presented could change much about it in this instance. If you make fun of...
  19. P

    Endotherapia (GEMSP) as a customized treatment for ME/CFS?

    Is cholesterol-pll-oleic a potential lxr-agonist or do they just have similar names? Sorry if I am mixing something up, bit foggy right now, but I believe there was something about sterol-derived stuff being a ligand in your lxr thread...
  20. P

    Jen Brea and Unrest make it into the BMJ as an opinion piece

    This is a good piece. Straight to the point. I think it is interesting that the author seems almost surprised how people could still be caught up in 'mental equals completely controllable'-thinking, yet roughly 85% of the (obviously selectively biased by availability) sample of doctors I have...
  21. P

    Grey and white matter differences in Chronic Fatigue Syndrome

    What would a grey/white-shift ostensibly lead to (in general, and in the areas in question specifically)?
  22. P

    Dutch fatigue scientists getting worried

    On first glance: Saying exactly how and why the objections were baseless would have been helpful, because all that follows after this sentence is a lot of 'quantity' and no 'quality', but I guess that would not fit into such a short notice. Garbage In, Garbage Out very obviously applies to...
  23. P

    NPR: For People With Chronic Fatigue Syndrome, More Exercise Isn't Better

    On the one hand, it is great that this kind of stuff finally gets out there. On the other hand, we are in a situation where we are actually happy about articles that basically say 'breaking news: smoking more and more does not actually cure lung cancer'. Well, I'll take it for now.
  24. P

    Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

    To be honest, I think the entire psychological/biological debate is a bit beside the point. The reason behind being for or against CBT/GET/LP/Rituximab/CoffeeEnemas/Amphetamines and everything else should eventually always be if an intervention does or does not work. Even if someone wants to...
  25. P

    Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

    I think the interesting point here might be that several professors of Psychiatry/Neurology responded to the trial release with statements that seemed to either take the abstracts/conclusions at face value without looking at it, or showed that they genuinely still do not understand the most...
  26. P

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    If any judge/policeman wants to get involved I am all for them 'calling it as they see it'. ;-) What I meant was that there is usually not much point in telling someone your opinion in private if you are not a person of authority of some sort. And with people like Parker/Crawley this seems...
  27. P

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    Yeah, that... sort of is the entire problem here isn't it. That's why we do need to have our Tullers and Geraghtys and Rehmeyers and so on put out a thorough analysis and publish it somewhere where it cannot be ignored as easily. Private emails can just be discarded if one does not care to read...
  28. P

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    That is beside the point here, though. What good do you think will come from telling a person you think is a criminal, that, in fact, you think she is a criminal? Especially one with a history of lying on radio (see yesterday), making accusations of libel she cannot refute when challenged to...
  29. P

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    I've just now had a look at this. Can anybody tell me why it says that out of 49 people in the SMC only arm, 1 received LP and 2 SMC+LP, while in the SMC+LP arm, 9 received SMC only and no LP? Is this a joke?