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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. Mark

    URGENT MESSAGE FOR UK ME PEOPLE

    There is a thread on this topic already -- http://forums.phoenixrising.me/inde...on-chronic-fatigue-26-sept.54596/#post-911162
  2. Mark

    "Unrest" review in NY Times

    Several posts have been edited or removed from this thread because they strayed into political discussion resulting in personal attacks. Please refrain from posting about politics: it just starts arguments and it's not what these forums are for.
  3. Mark

    Article Invest in ME Conference 12: First Class in Every Way

    Big thanks to both MEMum and OverTheHills for a great job tweeting and writing our articles on the conference. :thumbsup::thumbsup::thumbsup::thumbsup::thumbsup: This last one really brought things to life for me and made me wish I'd been able to be there this year. With the photos as well, I...
  4. Mark

    2017 CMRC Conference

    If anybody would be willing and able to attend the CMRC conference and tweet and/or write an article on the conference for Phoenix Rising, we could potentially pay expenses. If anyone's interested, please contact me via conversation.
  5. Mark

    James Coyne: Should authors declare a conflict of interest...

    In the context of academic research, yes that's the specific meaning of the term, and also in plenty of other contexts. But google it, and the dictionary definition I gave comes up at the top of the page. It gives the example "the conflict of interest between elected officials and corporate...
  6. Mark

    James Coyne: Should authors declare a conflict of interest...

    My understanding of the term 'conflict of interest' is that it refers to a situation where an individual stands to gain personally from a situation - usually, but not necessarily, financially - in which the individual is also acting in some other capacity. Dictionaries and wikipedia seem to bear...
  7. Mark

    BBC Radio 4: Children with ME

    There is no imaginable 'like' button powerful enough to express my pleasure at reading this news! :):):) :balloons::balloons::balloons::balloons::balloons:
  8. Mark

    MEA response to the GETSET trial

    I find it interesting that (IIRC) the recent Klimas study, which seemed to demonstrate a placebo response amongst its results, seemed to show that placebo response affecting self-reported fatigue but not self-reported physical function. Perhaps there may be good evidence from a number of other...
  9. Mark

    Eyes problems and CFS

    Dr Hutchinson got some really strong results from her study (I think it's the one referred to here) which seemed potentially very valuable, to me - her presentation at IiME seemed to promise a simple, objective test of the visual anomalies she found in the majority of me/cfs patients she tested...
  10. Mark

    UK NICE guideline consultation open 10 July 2017 until Friday, 21 July 2017.

    Last time I looked at this (when the same question was asked on the forums, I think), my rough impression (IIRC) was that as a US non-profit we probably wouldn't qualify, due to the list mentioning 'national' organisations (which I took to mean UK). However as Jo's post and subsequent discussion...
  11. Mark

    Best Info and Resources on ME/CFS and Workplace Issues (esp. US info)?

    I've been invited (by someone I met yesterday) to pass on any good information and resources I have about ME, with particular interest in: Workplace issues US information The Social Model of disability (note: this does not mean BPS, but rather means turning things round and identifying...
  12. Mark

    Dr Naviaux's Suramin & Autism Trial - publication and interview

    The abstract says there were two primary outcomes: ADOS-2, which seems to be a subjective assessment, and Expressive One-Word Picture Vocabulary Test (EOWPVT), which sounds somewhat more objective. On EOWPVT, the results say the scores did not change. Further grounds for scepticism that the...
  13. Mark

    Phoenix Rising: The Gift That Keeps on Giving All Year Long

    You can. Donations are via Paypal, but you don't need a Paypal account, and you can make a one-off or recurring donation through Paypal using your credit card. There's a page with some detail about how to donate here: http://phoenixrising.me/donating Thanks very much for your support. :thumbsup:
  14. Mark

    ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

    You're more than welcome Suzy - huge thanks to you and to Mary for the incredible work you've done on this issue over the last several years. We're constituted as a US non-profit of course, but our membership is international so it's always an open question whether to list ourselves as US or as...
  15. Mark

    ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

    Phoenix Rising has posted its comment on the proposal submitted to WHO by Suzy Chapman and Mary Dimmock for including our disease in ICD11 (International Classification of Diseases – 11th edition). The World Health Organization’s (WHO) ICD10 included CFS, ME, and PVFS in the Neurological...
  16. Mark

    ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

    Buried in my email somewhere, I've been focused on sorting out our technical foundations to ensure that PR forums continue to exist. I'd love for us to comment on this, I know it's important, but haven't had time to investigate what I need to do, let alone draft a response. If any member would...
  17. Mark

    12th Invest in ME International ME Conference 2017 registration is open

    I regret to report that neither I nor Kina will be able to make it to the conference this year. :( So I am hoping that one or more members who are attending may be able to cover the conference for Phoenix Rising, by tweeting and/or writing one or more articles about the conference. We are able...
  18. Mark

    Janet Dafoe Joins Phoenix Rising Board of Directors

    I'm delighted to announce that Janet Dafoe has joined Phoenix Rising's Board of Directors. I expect that almost everybody reading this already knows Janet as the wife of Professor Ron Davis; as the mother and caretaker of her son Whitney Dafoe who is severely ill with ME/CFS; as a deeply...
  19. Mark

    IiME have just received this letter from NICE

    Me three. It really seems to me that the time we want the guidelines reviewed is after the publication of the Rituximab Phase 3 trial. Immediately before that seems like the worst possible time. In theory, yes, Sasha's right that the guidelines can be scheduled for review whenever significant...
  20. Mark

    IiME have just received this letter from NICE

    We briefly considered this a couple of years ago and I think the conclusion was that as a US non-profit we aren't eligible. MEAction UK might need to be a UK charity similarly, I don't know if they are. If anyone can confirm that PR is eligible we can consider it, although as always it would...
  21. Mark

    UK academics view ME differently to US says NICE spokesman

    Thank you Roger, I've been wanting to make a similar point for a long time. It's a horrible gamble we have to take here, because as we all know here, lives are being lost and suffering and iatrogenic harm continues while the current guidelines remain in place. However, after the next review...
  22. Mark

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    I've notified our team at the conference about this thread, so hopefully there'll be an opportunity (in a very busy day for them) to keep an eye on it and just maybe pass on some questions to the presenters, or answer some of your questions themselves. But of course it's hard to do...
  23. Mark

    IACFS/ME conference in Fort Lauderdale, Florida on October 27-30

    It looks like we have a hastily-organised tweet team in place for the whole conference...hopefully, if everything goes to plan...so keep an eye on Phoenix Rising's Twitter account...
  24. Mark

    Livestream today! IACFS/ME Preconference event at Institute of Neuro Immune Medicine

    It looks like we have a hastily-organised tweet team in place for the whole conference...hopefully, if everything goes to plan...so keep an eye on Phoenix Rising's Twitter account...
  25. Mark

    IACFS/ME conference in Fort Lauderdale, Florida on October 27-30

    I'm working today on getting us a tweeter, or a tweet team...if anybody attending is interested in being part of a PR team tweeting from the PR twitter account, please register your interest here and I'll contact you with the details.
  26. Mark

    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    On the face of it, it seems to me that the new paper from Stanford contradicts the McLaren-Howard findings. The Stanford paper found no mitochondrial abnormalities (with one relatively minor caveat) and normal ATP production in mitochondria, but excess ATP production from an unknown source...
  27. Mark

    Are we close to a "unified theory" of ME/CFS? If so, what is it?

    Having attended IiME for the last few years, each year I have got the impression of a field of research that is maturing and moving forward. This year I noted a few tentative but tantalising connections between different research findings. To me, the current situation seems like this: we have an...
  28. Mark

    "Perceptions of Myalgic Encephalomyelitis" by Robert McMullen

    This is brilliant writing. Apart from the main article, further on is the best poetry I've ever seen about ME. Thanks Tom, and thanks to Robert too.
  29. Mark

    The real story about chronic fatigue syndrome

    We have: http://phoenixrising.me/stock-photography Article about it here: http://phoenixrising.me/archives/27244 Perhaps someone would like to highlight this resource on the comments on Dr Hanson's article...
  30. Mark

    Elevated Energy Production in Chronic Fatigue Syndrome Patients

    Swedish conference thread, Jo Cambridge reports they are now finding elevated glycolysis in naive B cells of ME patients, working this up now...