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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. dancingstarheart

    Updated NIH reponse to CFSAC recommendations

    Another possibility is NIH extramural funding Rituximab trials in Canada. NIH could also help fund Norways or UKs trials, because NIH has been known to fund international research. Like the one HIV research done in China that Senator Bill Cassidy mentioned at the Fall appropriations meeting...
  2. dancingstarheart

    Updated NIH reponse to CFSAC recommendations

    Here is an idea to get around the excuse of loss of patent for Rituxumab, that Pharma won't risk funding a costly phase 3 trial. How about the brand new fully humanized version of Rituximab? It basically works same way as Rituximab. So it should have less side effects since it is fully...
  3. dancingstarheart

    NIH post-infectious CFS study

    No inconsistency, just some misunderstanding that I hope I can clarify. The petition went to Collins because he was the one promising a research study and made several comments in regards to the type of research. See this blog for further details...
  4. dancingstarheart

    NIH post-infectious CFS study

    Saw this quote in jimells post in this thread. "Solve ME/CFS said: Solve ME/CFS Initiative President Carol Head will continue to raise the concerns over Dr. Walitt when she meets with NIH officials in D.C. on March 8 along with fellow advocate Mary Dimmock" here is the link...
  5. dancingstarheart

    NIH post-infectious CFS study

    I appreciate the courage, use of energy, and time to communicate your experience to Cort Johnson, and when that failed to be included in his article, you took the time to report it here. This is very important. Thank you so much. Even if Walitt is not in charge of the study, the protocol...
  6. dancingstarheart

    NIH post-infectious CFS study

    I am not angry about a delayed response from the recipients. I did not expect a quick response. The confusion came from how others were responding to that email and trying to elicit a response from MEadvocacy, but that has been resolved. I will not become fearful of government officials...
  7. dancingstarheart

    NIH post-infectious CFS study

    SOLUTIONS FOR BETTER COMMUNICATION: MEadvocacy expects any information e-mailed to us to be turned into official statements for all to see. We are asking for full disclosure of the selection process for this study. We understand this is a learning process of improving communication, but was...
  8. dancingstarheart

    NIH post-infectious CFS study

    The US ME community has had a very bewildering, fast paced week. First with the news that this protocol for an intramural study went up on the NIH website and then followed up by snippets of information here and there. One advocate gets a phone call, the other one just happens to be at meeting...
  9. dancingstarheart

    NIH post-infectious CFS study

    Competition and collaboration. I think Ron Davis explained that well. I agree, we wouldn't be in this mess if the CDC and NIH had prioritized this disease properly. Agreed, no specifics provided. NIH/NINDS still has to prove that they can put a decent study together. Final protocl with...
  10. dancingstarheart

    NIH post-infectious CFS study

    Ron Davis does not have NIH's budget.
  11. dancingstarheart

    "NINDS Director Expresses Shock (and Awe) at Community Response to Clinical Center Study Protocol"

    MEadvocacy was not talking about defining a new set of ME criteria. My thoughts, there are three types of criteria that ME patients have supported, the CCC and the ICC and Ramsay's, though some have a preference. Why not a biomedical study evaluating for all 3 criteria and compare and contrast...
  12. dancingstarheart

    NIH post-infectious CFS study

    We have had 30 years of documenting abnormalities. We need large studies to replicate and confirm, not try to re-invent the wheel. How many ME researchers have done or are currently doing small studies over the 30 years showing NK cells not functioning, cytokines profiles that were irregular...
  13. dancingstarheart

    NIH post-infectious CFS study

    Who is the historically damaged and disdained group here? That would be the patients. NIH needs to build trust with us, not the other way around.
  14. dancingstarheart

    NIH post-infectious CFS study

    Flour, sawdust, and I will add rat poison to the possibilities. Because previous studies have been poisonous and resulted in the medical establishment treating us with neglect and many times contempt.
  15. dancingstarheart

    "NINDS Director Expresses Shock (and Awe) at Community Response to Clinical Center Study Protocol"

    This is stretching for reasons not to put a stop to this study and all based on fear, and helplessness to the whims of NIH, worrying that NIH will just decide drag their heals or not fund a study at all. And those those feelings are very validated, because NIH has not funded to study this...
  16. dancingstarheart

    "NINDS Director Expresses Shock (and Awe) at Community Response to Clinical Center Study Protocol"

    Excellent explanation! This is an urgent issue due to the CDC presentation by Dr. Nath. I have heard no one on PR addressing any concern about this presentation. Why is that?
  17. dancingstarheart

    NIH post-infectious CFS study

    Why were these communications not made public, or were they? Where is the transparency this community most definitely needs?
  18. dancingstarheart

    NIH post-infectious CFS study

    I have heard there are some Lyme patients after treatment that development arthritis in the knees but don't have the other symptoms common to chronic lyme patients such as fatigue, pain, etc.. But all I have found are studies on Lyme patients with arthritic knee pain compared to osteoarthritis...
  19. dancingstarheart

    NIH post-infectious CFS study

    My guess is they do not want artifacts from old brain injuries interfering with their fMRI scans. Plus, multiple small concussions and also severe concussions have been shown to lead to dementia symptoms. So easier just to say no to all with that type of injury.
  20. dancingstarheart

    NIH post-infectious CFS study

    Specifically it was asymptomatic for fatigue symptoms. "had Lyme disease, were treated, and don t have fatigue symptoms" So does this mean those post-treatment arthritic knee lyme patients are acceptable as long as they don't have fatigue? The selection of this cohort does not make sense to me.
  21. dancingstarheart

    NIH post-infectious CFS study

    I am concerned that they will say that ME patients were misdiagnosed functional movement disorder, than the other way around. They already believe the mind controls the brain to make changes during a fMRI for FMD/ somatoform disorder. Now the study would let them compare ME fMRI studies and...
  22. dancingstarheart

    HHS, NIH, AHRQ and CDC respond to Aug 2015CFSAC recommendations

    Hi Mark, Gabby has kindly shared this thread with our MEadvocacy advisory group since some group members are not PR members. You have made very valid points. One of our group's members, Colleen Steckel has a great response that I concur with: "You may be willing to wait another year... I'm...
  23. dancingstarheart

    Invitation to Participate on CDC's ME/CFS Technical Development Workgroup

    @leela Oh, I do not know Samuel personally. Just saw this blog posted the other day and thought it very riveting. Sorry to hear he is doing so bad.
  24. dancingstarheart

    Invitation to Participate on CDC's ME/CFS Technical Development Workgroup

    Here is an interesting blog that might give perspective on the CDC workgroup process. Or at least something to think about, and how we can think of solutions. http://thekafkapandemic.blogspot.com/2015/12/bureaucratic-theater.html?m=1
  25. dancingstarheart

    Invitation to Participate on CDC's ME/CFS Technical Development Workgroup

    I was wondering how transparent this CDC workgroup process will be. Is the only public meeting going to be at the completion of the working group? Will the representative for Phx R be able to take information from the working group and get feedback from the forum? Since this is such a long...
  26. dancingstarheart

    Social Media - Community advocacy fail. Why?

    Not sure if you mentioned this somewhere else. But here might be something to make things easy for Phx Rsing members. Have some moderators create public lists under Phx Rsing twitter account. Anyone can follow a public list. So, that might help all those who are new at starting twitter about...
  27. dancingstarheart

    Social Media - Community advocacy fail. Why?

    To help with the crazy newsfeeds.... you can create lists and add not only people you follow but those you don't follow to the list... then whenever you want to see latest news, you just view the your list's feed. So you can have a knitting list of all tweeters and sites featuring that topic...
  28. dancingstarheart

    Social Media - Community advocacy fail. Why?

    Hi, just as some more info. I have had people follow me, just because I retweeted their tweet. Or I have had followers of the person I retweeted, like that I retweeted and started following me. Also, whenever a tweet has a hashtag in it, there is a whole different group of people the watch...
  29. dancingstarheart

    Sign petition to HHS stating CAA/SMCI does not represent "our voice".

    Your first point, basically restated my comment. For your second point, I agree it is difficult to determine motive but it can and should be attempted. A person's actions and comments over their career/ life, will indicate what outcome they are trying to influence. A sum of actions that...
  30. dancingstarheart

    Sign petition to HHS stating CAA/SMCI does not represent "our voice".

    They have specifically stated they want to turn the report into action, which to me means implementation of the report. They also have brought in Morgan Fairchild who they are promoting as an activist and a patient and mentioned the meeting is for "our community", which gives the impression...