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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. justinreilly

    CALL TO ACTION! NICE ARE BETRAYING US!

    I absolutely agree 110% with Jackdaw! This is a lot like the Institute of Medicine and HHS panels that HHS sprung on us to try to get their anti-science propaganda enshrined even further. We realized this was an absolute disaster if this went ahead as they were staging it. They had panels that...
  2. justinreilly

    CALL TO ACTION! NICE ARE BETRAYING US!

    Not thrilled with a charlatan on the NICE ME Committee lying about your disease? Why not rate his BS book One-Star on Amazon? I did, and let me tell you, it feels great! Amazon USA...
  3. justinreilly

    Petition: Opposing MEGA

    As another patient said: “Burn me once, shame on you. Burn me twice, shame on me.” These charlatans- White, Crawley and friends- have burned us on hundreds of studies, probably substantially caused the early death of many many thousands of ME patients and incalculable suffering The only prudent...
  4. justinreilly

    NIH wants your views on what to research and research strategies

    My Response to the NIH RFI Please feel more than free to use my response as a basis for your response or to simply send my text in yourself, modified or unmodified, or send a response to NIH in support of mine (eg "I support Justin Reilly's response to Notice NOT-NS-16-024; Request for...
  5. justinreilly

    ME/CFS Alert: Episode 77 - Dr. Derek Enlander

    He just means their Karnofsky score went down (to a significant degree, Im assuming). It was just Karnofsky score pre-exertion; one day after and two days after. I assume he would use two control groups- one who came to the office and did not do the exercise/activity and one that did not come...
  6. justinreilly

    ME/CFS Alert: Episode 77 - Dr. Derek Enlander

    Noone should worry about this study hurting patients. I was in this simple study. I would be surprised if the exercise/activity caused any real harm. It was just two minutes on an exercise bike (some or most of the other patients did the same thing just with their arms instead of their legs-...
  7. justinreilly

    Online Vigil to Remember Vanessa

    Dear M.E. Community: Karen Goode is planning a "virual vigil" for Vanessa Li for TOMORROW and she still NEEDS HELP with several tasks such as editing images of Vanessa, posting things to the vigil facebook (or other site) page (not up yet) before and during the "vigil" and help with uploading...
  8. justinreilly

    Scientific American: Baffling CFS Set for Diagnostic Overhaul

    I wrote to the author. My letter below. You can tweet to her @KHCourage and/or send her a message at: http://katherinecourage.com/contact/?contact-form-id=170...
  9. justinreilly

    Interview with Ian Lipkin: posted

    I sent a letter to Prof. Lipkin. I will see if there is a response and if so will let you know if he says it's ok to repeat.
  10. justinreilly

    Eileen Holderman's Email to IOM: Continued Opposition

    I have emailed my support for Eileen's letter to the below people. Urge everyone to do the same. Thanks! fineberg@nas.edu (fineberg@nas.edu); Kathleen Sebelius (kathleen.sebelius@hhs.gov); Howard Koh (howard.koh@hhs.gov); collinsf@mail.nih.gov (collinsf@mail.nih.gov)...
  11. justinreilly

    Guardian: Dr. Dillner (BMJ) - Should I stop being a perfectionist?

    I commented on the article and also emailed the author at ldillner@bmj.com. I encourage you to send a short email to her endorsing my call for a look into this problem at BMJ. I know it probably won't go anywhere, but I think it would be good to raise awareness there about the problem or at...
  12. justinreilly

    Guardian: Dr. Dillner (BMJ) - Should I stop being a perfectionist?

    There are certainly anecdotes of perfectionistic people getting ME "CFS." Because I think anecdotes have some value, I would guess that perfectionism is correlated with ME. However, it seems to me almost all doctors and scientists do not value anecdotes at all (except sometimes their own).I've...
  13. justinreilly

    HHS Secretary Sebelius Resigns

    Obama will nominate Office of Management and Budget Chief Silvia Burwell to fill the spot. http://www.nytimes.com/2014/04/11/us/politics/sebelius-resigning-as-health-secretary.html?hp&_r=0
  14. justinreilly

    Suggested new name for ME/CFS

    Keep in mind that in the US that as a rule the medical and government communities do not consider there to be an "ME" apart from "ME/CFS." I think Derek Enlander's saying ME and CFS are different was the first time I have ever heard that distinction made in the medical or governmental spheres...
  15. justinreilly

    Suggested new name for ME/CFS

    Well, there is proof that one of CDCs namers had financial protection of insurance companies as a main goal. In Osler's Web, Hillary Johnson recounted that in response to a FOIA request she got the text of an email from one naming committee member to another stating that he favored CFS as a...
  16. justinreilly

    Occupy CFS blogpost "Congress: We Need an RFA"

    Here are the CFSAC recommendations cited by anonymous: May 2011: 2. CFSAC recommends to the Secretary that the NIH or other appropriate agency issue a Request for Applications (RFA) for clinical trials research on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). November 2012: 3...
  17. justinreilly

    Occupy CFS blogpost "Congress: We Need an RFA"

    The thing is, I am not clear on if this proposed RFA will actually raise funding at all. From how I understand it, funding could be lowered and still grant everything requested in this letter. I have asked about this on occupycfs, but haven't gotten a real answer.
  18. justinreilly

    Suggested new name for ME/CFS

    ICC did in 2011. WHO did in 1968 and still does. I believe Scotland also does. USA SSA appears to be recognizing ME as a discrete disease in its latest ruling on "CFS." Every branch of HHS (and the President) is using ME/CFS as the default term except for CDC, but Unger used ME or ME/CFS at...
  19. justinreilly

    Suggested new name for ME/CFS

    I think this would really hurt us. I think there are several interrelated negatives: (1) I think a lot of people think orphan initialism is seen as meaningless, soulless naming by committee and almost (but not totally) as hollow corporate doublespeak. For example, I think people, especially...
  20. justinreilly

    Suggested new name for ME/CFS

    Sparrow, my take is there is pretty widespread support for ME.
  21. justinreilly

    Suggested new name for ME/CFS

    I think it is very clear we need a name change. If I were solely in charge of deciding it (king for a day) I would probably go with Ramsey's Disease. Peterson/Cheney Disease and M.E. would be good too. I am going to strongly vote for ME though because I don't think we can afford to have...
  22. justinreilly

    Occupy CFS blogpost "Congress: We Need an RFA"

    Chris, you may know that going to Congress is, imo, the way to go, though they're going to have to care a lot more than they do now and not put out such wimpy requests. I think it will take a long time to make the progress we deserve, but as you say, anything is better than what we have now...
  23. justinreilly

    Occupy CFS blogpost "Congress: We Need an RFA"

    I think Patricia Carter has some valid points and questions here: http://www.mecfsforums.com/index.php/topic,19855.msg160917.html#msg160917 Namely- Who worked with Dr. Gutman to come up with this letter? No requirement that research be biomedical. Don’t really like all the thank yous and...
  24. justinreilly

    Occupy CFS blogpost "Congress: We Need an RFA"

    http://www.occupycfs.com/2014/04/02/congress-we-need-an-rfa/
  25. justinreilly

    CAA is Listening

    CAA IS HARMFUL TO ME PATIENTS A few years ago when the Phoenix Rising thread "CAA is listening" was active (it is the longest thread in PR history with over 1,500 posts, the vast majority scathingly critical of CAA) I said that in my opinion CAA's board was clearly breaching its fiduciary duty...
  26. justinreilly

    California Conference Season 2014: Stanford Presents - Advances in Clinical Care and Translation...

    So Lipkin didn't find anything? He gave the impression before that he had e.g. that the retroviruses were more in patients than controls. I guess these are endogenous retroviruses? Did he discuss any implications of this finding? Thought he found some cytokine markers too. At least Montoya...
  27. justinreilly

    David Tuller: Chronic Fatigue Controversy

    Everyone who is on LinkedIn, please join the group American Public Health Association and Like and comment on my two posts, below. The posts are displayed on the page from most to least 'popular.' Let's get my posts to the top of the page and in front of the 45K public health professionals...
  28. justinreilly

    David Tuller: Chronic Fatigue Controversy

    Great article! (just don't like the title!) I emailed Prof. Tuller to thank him profusely (and to suggest adding "syndrome" in)
  29. justinreilly

    IOM treatment recommendations for CFS

    Anthony Hardie did recently make a nice post on the Facebook group. He said he watched some of the IoM meeting videos and he made a few suggestions. So, some beginnings of contact which is good.