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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. snowathlete

    PR Collapse

    Maybe only the person who originally created the group can see the Delete option? Who created the group?
  2. snowathlete

    PR Collapse

    I spoke with Esther about RAG, which he still owns, he said there is a new option of "delete group" under the user controls. I can't see it in this group as an admin, but I am not the group owner I suppose. Who is, and can they see the option? If we could save what we want then delete the entire...
  3. snowathlete

    PR Collapse

    Sasha would like to come back in here to delete her messages. I don't anticipate anyone having an objection to that, but just in case someone does, please let me know quickly if anyone has a problem with that.
  4. snowathlete

    PR Collapse

    Given the situation on PR, I think it might be wise to delete threads here. If I remember correctly we'd need the first post in each thread to be deleted to kill a thread? As discussed previously on a number of occasions, we need to move to a more certain closed group where we have total...
  5. snowathlete

    Can UK based school legally require me to see their doctor to get extra time on exams?

    I'd start by politely asking them why your own doctor's evidence is not adequate? They're registered with the GMC etc. so what's the problem. If they could give a good answer I'd see their doctor. If not I might still see their doctor but depends. Nothing wrong with asking reasonable questions.
  6. snowathlete

    PR Collapse

    I think we have to archive then delete the existing threads at least because they regard people like Sasha who have left and want to be sure their information is protected. Although I think it is unlikely that those running PR will try to come take a look it is a possibility and some of us feel...
  7. snowathlete

    Very Sad

    I am deeply saddened. PR used to be a place where I could like almost everyone, even those I disagreed with, and who disagreed with me. Lately, if you say something somewhat doesn't like they hate you for it. It's completely stupid. Now, I don't feel secure in the same way as before. It feels to...
  8. snowathlete

    Another "Oh Well" thread.

    Sorry to hear Wonko, hope to see you somewhere else in the community.
  9. snowathlete

    Farewell, until we meet again

    What a sorry state of affairs, I am sorry to see you leave. I understand why.
  10. snowathlete

    Flu vaccine and ME/CFS - MEA info leaflet for 2017 - 2018 vaccine

    There are a number of ideas about it, a bunch of threads on here over the years, but it's under-researched I feel.
  11. snowathlete

    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    not much of this is new I think, but that his wife in involved in some of these suppliers, that bit I don't think was known before.
  12. snowathlete

    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    Didn't know his wife was a director where I was buying the 4ME (nexavir). It was very expensive.
  13. snowathlete

    Flu vaccine and ME/CFS - MEA info leaflet for 2017 - 2018 vaccine

    That's a thorough report Charles, noting the potential downsides as well as the benefits. Great stuff from the MEA, thank you. My family will be getting it. I won't simply because I'm largely immune to cold and flu since getting ME, but if I wasn't I'd probably have it.
  14. snowathlete

    How to fund our latest paper?

    I'd suggesting asking fora reduction, then MEA and other potential funders first. Then if we don't reach the amount we need then crowdfund it. I think a lot of patients would support it so only a few pounds each for people so not a big deal.
  15. snowathlete

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    sorry, partly my fault. I won't be adding anything further on that tangent.
  16. snowathlete

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    The ICC doesn't require immunological symptoms either. It's not mandatory, you can have that or something else like gut dysfunction. While it's possible with IOM criteria to not have cognitive impairment and yet meet the criteria instead because you have orthostatic intolerance, I think it...
  17. snowathlete

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    pretty similar in terms of their selection of patients, yes.
  18. snowathlete

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    I think they're pretty similar, the criteria, so I guess we disagree in this case.
  19. snowathlete

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    I think that depends on what people mean by "ME". If you mean encephalomyelitis in the true sense, as in inflammation in the brain and spinal cord that damages myelin, then yeah, I'd agree with you. But I don't think there is a great deal of evidence that most people with an "ME" diagnosis have...
  20. snowathlete

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    I personally think the IOM criteria are good and I don't have an issue with them being used for research purposes, even though, as you point out they did say they were meant for clinical purposes when they came up with them. It always seemed an odd thing to say to me because it was obvious...
  21. snowathlete

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    do we know who the reviewers were? Ron's son having ME should be no biggie, they funded Hanson and her son has ME too. It's not usually a barrier against funding or involvement in any other field of medical research that you have a family member with the disease you're working on. I'd be...
  22. snowathlete

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    It always takes years I'm sorry to say. I think Ron Davis' approach is quicker, but high quality research still takes a lot of time to carry out properly. It's particularly hard for patients waiting with no treatment. I think that unmet need is why the NIH needs to continue to fund more and more...
  23. snowathlete

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    I am very pleased that NIH has funded some promising research. Good on them for that because it's what we've been calling for and what is badly needed. I think there needs to be much more but it does seem they are beginning to deliver on their promises. Well done to those who got funding, I am...
  24. snowathlete

    Retuximab coverage

    good to hear you are reacting positively to the treatment @Butydoc I hope that continues.
  25. snowathlete

    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    thanks @charles shepherd you do a lot of important media work that helps us a great deal I feel, as without you it would be much worse.
  26. snowathlete

    New Times article on NICE (mostly good)

    Quite possibly, but perhaps more likely to get an invite if you register. I don't know. I do think the community needs to advocate for NICE to invite appropriate people. If appropriate ppl don't register then it makes it more likely that NICE end up selecting inappropriate ppl for the...
  27. snowathlete

    New Times article on NICE (mostly good)

    When I looked into this before, people have to apply to be on the committees. https://www.nice.org.uk/get-involved/join-a-committee There is a page on what the requirements are, which I cannot find at the moment. I would think you would meet the requirements though. I would suggest contacting...
  28. snowathlete

    New Times article on NICE (mostly good)

    I think we must do better at getting topic experts on board who actually know what they are talking about. I imagine the few good ppl we have in the U.K. do apply, but perhaps the community needs to be vocal and advocate for these ppl to be accepted by NICE.