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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Roseblossom

    Hear More on Tuesday about NIH study during CDC’s Grand Rounds

    Yes, my heart sank more & more as his presentation went on. If he's seeing such a large percentage of improvement/recovery using antidepressants & other drugs, and graduated exercise building up to aerobic exercise, then he must be studying patients who only have chronic fatigue due to...
  2. Roseblossom

    Solve CFS and Biovista release name of drugs for repurposing

    Unbelievable - a recommendation for Trazodone, an antidepressant that exacerbates core ME/CFS symptoms; side-effects include orthostatic hypotension, cognitive impairment, sedation/weakness, and cardiac arrhythmia. :grumpy:
  3. Roseblossom

    "Tug of War: Epic battle over data in controversial paper on chronic fatigue syndrome"

    Fortunately he quickly fixed that. o_O http://andrewgelman.com/2015/12/25/more-on-the-pace-chronic-disease-syndrome-study-scandal/
  4. Roseblossom

    The common link between functional somatic syndromes may be central sensitisation (PD White and Co.)

    Especially when it's the friendly Journal of Psychosomatic Research on whose editorial board sit several familiar names, including: P.D. White Queen Mary, University of London (QMUL), London, UK M. Sharpe Warneford Hospital, Headington, Oxford, UK S. Wessely King's College London, London, UK...
  5. Roseblossom

    New NIH article touting benefits of CBT and GET

    I wrote to them too. They responded today: RE: "Chronic Fatigue Syndrome" article inaccurate Dec 12/03/15 4:19 PM Dear ______, MedlinePlus news items come from an outside provider (HealthDay...). The National Library of Medicine does not write the news stories. After reviewing the recent...
  6. Roseblossom

    Petition for More NIH Funding

    Bump. "We've got 1,353 signatures, help us get to 2,000 by June 15, 2015" http://www.thepetitionsite.com/490/782/145/more-nih-funding-for-mecfs-research/
  7. Roseblossom

    Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

    Dr. Ellen Wright Clayton is impressive in her knowledge and her ability to speak to the urgency of addressing this illness. She spoke of how much research and discussion went into the IoM report to make it the most comprehensive to date. She reviewed the IoM report's important recommendations...
  8. Roseblossom

    Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

    Me too, Roy. I'll be even more hopeful when I find out which "...media, congressional leaders and executive branch decision-makers...." will be attending. (I'm not that interested in celebrities, though I appreciate their good will.) I've emailed SolveCFS.org asking if they can share any...
  9. Roseblossom

    Unum Class Action Lawsuits

    Good! Unum is like a giant poisonous spider with web strands reaching into every part of world. Their previous millions of dollars worth of fines don't seem to have slowed them down; they arrogantly behave as if they're above the law. And that's no surprise given how they've embedded...
  10. Roseblossom

    Depression Poll

    Another key distinguishing symptom is the patient's response to exercise. Patients with depression are improved by exercise. Conversely, patients with (SEID) Systemic Exertion Intolerance Disease are worsened by exercise. .
  11. Roseblossom

    Chronic Fatigue Syndrome: Right Name, Real Treatments

    Oh ha! thank you so much, halcyon - now the Twilight Zone theme music is playing in my head too :cautious:
  12. Roseblossom

    Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

    Registered. Please add your succinct comments about what you'd do if you were well: https://www.surveymonkey.com/s/IOM_IFIWereWell I said "Every day I'd turn on my favorite music & dance, as I used to do before I got sick. Then I'd work to get accurate information to every doctor NOW, and to...
  13. Roseblossom

    Poll: Suicide - as many as one in five CFS patients kill themselves

    Re: the title of this thread "...as many as one in five CFS patients kill themselves." I'm no math whiz, but one in five = 20%, right? So for every million of us, 200,000 of us are going to commit suicide? *blink* Edit: Well this is a good lesson not to post before I read the whole...
  14. Roseblossom

    Sign this e-card by 28 Feb to thank the IOM committee!

    Yes, many thanks for setting this up, Scarecrow & Co! I finally finished reading the complete report yesterday and was pleased to find a way to send my sincere thanks to the committee.
  15. Roseblossom

    Articles on the release of the IOM report

    Lots of science and medical journals are reporting too: JAMA Journal of the American Medical Association: http://jama.jamanetwork.com/article.aspx?articleid=2118591 The BMJ British Medical Journal: http://www.bmj.com/content/350/bmj.h775 BBC ScienceAlert...
  16. Roseblossom

    Let's not forget what's IN the IOM report!

    http://forums.phoenixrising.me/index.php?attachments/19012-pdf.9945/ Thank you, A.B. and DanME. It would be great to have the PDF of the complete Institute of Medicine report thumbtacked to the top of this IOM subforum, in a locked read-only post.
  17. Roseblossom

    Well, I like the IOM report! Who do I thank?

    I hope everyone will read the full 304-page report in its entirety. The free PDF file is very readable and easy to load onto your computer, so you can read it on your screen or print it out to read and/or share. To Download Free PDF file to your computer, start here...
  18. Roseblossom

    Articles on the release of the IOM report

    There have been more positive, accurate news articles about our illness in the past 24 hours than I have seen in the past 10 years.
  19. Roseblossom

    Washington Post -- CFS is NOT a psychological illness!

    Yes, I too was glad to see that the Washington Post reported today's IoM announcement/report release, except for that one glaring error. It's outrageous and VERY disappointing that in an article specifically about today's IoM announcements, the WashPost writer interrupted with this unrelated...
  20. Roseblossom

    this page at CDC about zombies was too tempting not to comment

    ~~~~ haha, yes! I'm a member of that myself, specializing in the ME/CFS Slow-Motion Stagger. ;)
  21. Roseblossom

    this page at CDC about zombies was too tempting not to comment

    ~~~~ Judging from the CDC's past history, probably they'll rename zombie-ism CWFD - Chronic Walking Funny Disorder.
  22. Roseblossom

    What Should Phoenix Rising Tell the IOM Committee?

    ~~~ Yes, that confusing name thing has to be fixed, especially so that the research can be clear. Even the thumbnail biographies of the IOM Committee members use the terms interchangeably: http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49592 Even Dr. Nancy Klimas' bio: "...She is...
  23. Roseblossom

    What Should Phoenix Rising Tell the IOM Committee?

    Me too. In this case I think emphasizing the impact on us would not be an effective use of the limited time Phoenix Rising will have for their contribution. The members of the IOM Committee are scientists who will be focusing on diagnostic clinical criteria. They will be looking at the...
  24. Roseblossom

    What Should Phoenix Rising Tell the IOM Committee?

    ~ ~ ~ hi Firestormm - yes, the CCC endorsement letter refers to the original 2003 version: https://dl.dropboxusercontent.com/u/89158245/Case%20Definition%20Letter%20final%2010-25-13.pdf According to the IOM website, both the original and the revised versions will be considered by the IOM...
  25. Roseblossom

    What Should Phoenix Rising Tell the IOM Committee?

    ~~~ ~~~ ~~~ Don't waste precious time on the negative. This is a done deal. The IOM (Institute of Medicine) Committee has been given authority by the highest Health & Human Services body in our nation. The authority of this IOM Committee can get ME/CFS recognized by our nation’s medical...