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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. BurnA

    How do you market a disease to researchers?

    Give them money.
  2. BurnA

    Interview with Walter Koroshetz (NIH/NINDS Director) & Zaher Nahle (Solve ME/CFS Initiative)

    Unless we are contagious or unless we are in their faces it probably doesn't matter how many.
  3. BurnA

    Solve ME/CFS Discovery Forum 2017

    Thanks. What i was really wondering was, who do they expect to attend, as in what influence these people might have.
  4. BurnA

    Rituximab Aids in IgA Vasculitis

    Rituximab (Rituxan) may be an effective treatment option for adults with immunoglobulin A (IgA) vasculitis, a small observational study suggested. https://www.medpagetoday.com/Rheumatology/GeneralRheumatology/68387
  5. BurnA

    General ME-related news from Scandinavia

    This does make sense. If Cyclome comes first, its 'just' another unblinded trial with low n. If RituxME shows positive results, CycloME becomes a trial showing another possible treatment option and avenue for further research, from the same researchers who brought you the first trial which...
  6. BurnA

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Do you think they may understand but dont want to admit it becasue as one reviewer said - nothing in psychiatry would be believed so it shouldn't be said.
  7. BurnA

    Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research pr

    I don't know anymore than anyone else but I don't think it will collapse this weekend. There is a board meeting tomorrow I believe and we probably shouldn't talk about it until we get an update after that. (but don't let this put you off making a donation to the Biobank :))
  8. BurnA

    False hope?

    A bit more about Maria Gjerpe in this thread Both really. But my life is centred around research and ME news in general, so it's hard to seperate the two sometimes. But in life, I try not to think too far ahead and definitely not behind either. One day at a time. The decade will be gone...
  9. BurnA

    False hope?

    I havent given up hope but I do think a decade is a realistic timeframe. But I don't think about the long term anymore I just focus on what's next. Within the next 6-12 months we will have RituxiME and CycloME results and then possibly news of a biomarker. ME research will snowball as soon as...
  10. BurnA

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Have you seen the journal of health psychology special edition on PACE? One of the most important publications on ME. You are forgetting that it doesn't matter how much "we" know, the only thing that matters is what gets published in a peer reviewed journal. That's why we need Keith and the...
  11. BurnA

    Solve ME/CFS Discovery Forum 2017

    Thanks for your time here, please drop by whenever you can. About the discovery forum - can you tell us who you expect to attend in the audience - who will be listening to all the great speakers ? Thanks
  12. BurnA

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Would severe patients nor present like that? It's kind of obvious but it reinforces the importance of post exertion studies. Maybe that is where the secrets will be found.
  13. BurnA

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    If I can ask you another question: Why do you think its hard ? The problem I assume is there are no obvious or consistent biomarkers - Becasue we dont have the technology, not enough research or a lack of understanding / knowldge of a key component of ME ?
  14. BurnA

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Baraniuk is on the East Coast, that could be a problem ;)
  15. BurnA

    Investigating Post-Exertional Malaise as a Core Symptom of ME & CFS: A Meta-Analytic Approach

    We might know it, but for the medical profession to know it, it needs to repeated. It is useful to have something like this, at least to rubbish any study done using Oxford criteria.
  16. BurnA

    More from Science Medica Centre on SMILE

    Not even where to start? I would have thought there are enough clues by now. Even in the absence of a conclusive place to start, playing video games is unlikely the best place to look.
  17. BurnA

    More from Science Medica Centre on SMILE

    Yes I agree too. But if he sticks to exposing the bad science he will get a lot of support. Coyne manages it because I guess he just doesn't care about it. And he seems to be a viper at times himself so maybe he feels at home. Yeah I think he only got involved now because the LP is another...
  18. BurnA

    More from Science Medica Centre on SMILE

    I also tried to get his attention on twitter about a year ago, but he wouldn't bite. In fact he came out with a ridiculous excuse for testing video games an ME patients - something along the lines of -might as well try it because nobody has a clue about ME. James Coyne set him straight but it...
  19. BurnA

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    The criteria discussion is a seperate discussion. Sorry, but that's a fact. Otherwise this thread goes into a tailspin. It's easy to set up a new thread and call it "Criteria used for NIH funded centres" Then anyone who wants to discuss that topic can join in there.
  20. BurnA

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Could you start a new thread or visit an already existing one to talk about criteria? Otherwise this thread will become very sidetracked.
  21. BurnA

    Chronic Fatigue Syndrome Treatment Market Projected to Grow at a Steady Pace During 2017-2025

    OK this is completely off topic. But Eliza reminded me of this. I had a lecturer at one point, who passed the Turing test when he was a student in the late 80s in Dublin. Its quite funny and simple how he did it and the story is now quite famous in AI circles but if you have a passing interest...
  22. BurnA

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    It's fine to have that position but this thread isn't about NIH total funding for ME it's about the grants being awarded.
  23. BurnA

    "Is Cognitive Behavioral Therapy the Gold Standard for Psychotherapy?"

    Some exerpts for any other odd interested people.
  24. BurnA

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Agreed. The NIH cannot be seen to be swayed towards individual grant applicants, by petitions or it would be like sending an open invite for everyone to petition them. They at lease have to be seen to be merit based decisions. Petition for more money, more grants, whatever, but focusing on a...
  25. BurnA

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    But where do good intentions lead.? The CMRC has nothing to show for it's existence, ( not even a website) so patients have lost more years while the CMRC allow their Vice Chair to spout on about the lightning process. According to David Tuller, Stephen Holgate said they can't take a position...
  26. BurnA

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    A check against the full applicant list will confirm or deny this. Discussed in this thread
  27. BurnA

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    It's good news that we have finally got this far and the 3 research centres look like worthy winners. However it makes you wonder when the NIH says things like they don't receive enough high quality grant applications for ME. I am sure they could easily fund other groups based on the quality...
  28. BurnA

    Derya Unutmaz Jackson Laboratory - announcement Weds 27 Sept

    Not a problem, if the news is big it will deserve it's own thread anyway!