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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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Search results

  1. J

    NIH Sidesteps Critical Problems with the ME/CFS Study

    I don't know where to put this but it's all over the news. Seems like we overlap so much both with symptom and fighting the same battles. The study already has detractors. "You do a lousy study that's designed to fail, and you get a failed study. And that's basically what this is," says Dr...
  2. J

    NIH intramural research program update

    Did you see this in another thread? Thought it might be helpful. http://forums.phoenixrising.me/index.php?threads/nih-sidesteps-critical-problems-with-the-me-cfs-study.43799/#post-711248
  3. J

    NIH Sidesteps Critical Problems with the ME/CFS Study

    Reading the comment By Jeanette showed that they are using the IOM findings in ways that go directly against the IOM suggestions in multiple ways. I wonder if the woman who headed up the IOM would be able to speak up if she were made aware, They won't listen to us but I imagine they would...
  4. J

    "By J. Burmeister: Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability

    Sorry for late reply, bean dead. But yes That's what I meant but even if the PR community does't want to put whatever comes from it out in any official way, any individual could use the information provided to do with what they want, I think? IDK how it works here
  5. J

    "By J. Burmeister: Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability

    Yeah, I have no idea if what I described as far as continually changing a first post works or if there is a better way or a clearer idea of a purpose. I am definitely not the one you want to start or manage anything. My brain barely functions enough to put together sentences. so I have no claim...
  6. J

    "By J. Burmeister: Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability

    We could start a thread with a basic starting point of problem areas/suggestions and have people refine and contribute editing the first post until we can make it coherent and then write it up ourselves as one of the main patient communities. If nothing else it would be an organizing tool for...
  7. J

    Sense about science / PACE: The research that sparked a patient rebellion and challenged medicine

    You're right, sorry about that. As to to reasons why it's hard to get stories on us published I also agree but the story I'm talking about is not the same old neglected poor patient story. You're about that too, it is not news and that is what her story as good as it might be was as she...
  8. J

    "NIH to patients, 'We are your partners'" by Simon McGrath

    He also highlighted the key role patients who take part in the study will play, saying the history of medicine shows how doctors can learn from patients. So who do the patients in the study interact with that will make such a difference? Who is the coordinator or go between with the patients...
  9. J

    Sense about science / PACE: The research that sparked a patient rebellion and challenged medicine

    Right now seems like a perfect time for a really good investigative journalist who likes long form stories studied over months. There is a lot going on in our ME world right now and the timing is good with IOM and P2P acting as a legitimizers add Dr Tuller and the new story calling his blog...
  10. J

    The Real ME: A Stock Photography Resource for the Media

    I'm thinking more regular magazines, I don't read science mags but see images like this or the one Simon posted often enough. Maybe The Atlantic or The New Yorker off the top of my head? More in depth articles. But I see your point that the mass media and their standard use of photos is most...
  11. J

    The Real ME: A Stock Photography Resource for the Media

    They use images like this for Alzheimer's. Headline "It's Not Just Fatigue..."
  12. J

    The Real ME: A Stock Photography Resource for the Media

    Not that this isn't complicated enough but I thought I'd bring up the fact that for so many the brain disfunction is worse than the "fatigue". Funny, I actually miss real fatuige as I remember it. It was a pleasant feeling at times and I haven't felt it since I got "Chronic Fatigue"...
  13. J

    The Real ME: A Stock Photography Resource for the Media

    I definitely thought of this as perfect to depict the world and government's reaction to us. It's not stock photo but it's perfect. I have looked both great and heathy and grotesque and pathetic during different times yet there is always something in the eyes that you recognize in your own...
  14. J

    "By J. Burmeister: Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability

    Here is a former patient who was involved in a Walitt in the comment section o the Jeanette Blog we are discussing. "Thank you for this article. I met Dr. Walitt years ago when he opened the Fibromyalgia Center at Georgetown University Hospital and was recruiting patients for his research. I...
  15. J

    "By J. Burmeister: Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability

    Another angle we could take to get rid of Walittt and the others who gave a history of dismissing us and have a psych problem is the fact that the lead investigator role includes overseeing the well being of the patients making sure they do not come to harm. Enter Klimas..( god bless her and...
  16. J

    "By J. Burmeister: Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability

    Yes NIH made it sound like that, but it looks like they have with slick wording on multiple occasions tricked us into a false sense of security again. The wording below makes us think that our experts will be involved (and they probably will submit some patients even most patients for the...
  17. J

    NIH phonecall and Q&A, Tues 8 March

    I read somewhere that one of our advocates who met with the NIH people, when she was told that there was much surprise over the amount and passion of replies they were receiving from the patient community, she took some time to explain that we aren't like most patients. Due to the decades...
  18. J

    NIH phonecall and Q&A, Tues 8 March

    Ouch sorry to hear and hope you feel better soon. Thanks for all your hard work. It's the most comprehensive and illuminating on the trial participants and just thought a lot of people would find it useful. If I gave the impression that I was advocating sending nasty emails that is not the...
  19. J

    NIH phonecall and Q&A, Tues 8 March

    So this is getting started soon. What can we going to do? Did all the advocacy groups give up? If we can;t get them off the study I would at least like it on the record that we strongly object to these people being used as and labeled as ME clinical experts in charge of screening patients...
  20. J

    NIH phonecall and Q&A, Tues 8 March

    The objective of this research study is to begin to understand the clinical and biological characteristics of ME/CFS. The study will be conducted at the NIH Clinical Center in Bethesda, Maryland, to capitalize on the multi-disciplinary state-of-the art research and diagnostic facilities...
  21. J

    NIH phonecall and Q&A, Tues 8 March

    I guess a big problem is there are no real clinical experts at the NIH for our disease to chose from and that's got to be hard for them to admit. So we get the leftover Strauss people who have been proven charlatans but nobody will admit that either. Even Ian Lipkin who we like is not a...
  22. J

    NIH phonecall and Q&A, Tues 8 March

    Thank you Denise! Very helpful. Not completely putting me at ease. They played down Walitt's and Gill"s importance but as they are 2 of the handful of "clinical experts" deciding who gets in the study I'm disturbed by that. Just the fact that they are given that label by the NIH is...
  23. J

    NIH phonecall and Q&A, Tues 8 March

    Koroshetz's statements did not sooth me the way they did some. I felt he completely talked down to the people who asked some good important questions like they were a little simple minded and didn't get how science worked. A lot of be patient, we've got this, it tales a long time, there...
  24. J

    NIH intramural research program update

    @Valentijn, you should copy your post and send it to nash and the the advocates who will be talking to him. Wish you could be on the call.
  25. J

    NIH intramural research program update

    To me it's not even so much a factor that unknown infectious people could be part of controls, it's that the very people who helped discredit a massive and hard fighting group of lymes patients and made them into a joke much like us at the NIH are now showing up in our study. Pick a disease...
  26. J

    NIH intramural research program update

    Just a personal anecdote about lyme to add. My mom got classic Lyme with bullseye and standard treatment a few years ago. She and her doctor consider her cured. But to me it is obvious she went down hill after that both mentally and physically. She can't follow a conversation well, she's...
  27. J

    What Fixed/Aided Your Brain Fog?

    I'll join in the counterintuitive anecdotes. I also used pot at first to help sleep because I didn't like the sleep medication hangover. But I had to give that up after 6 months. But one thing for me that was weird was that alcohol, up to a point, gave me great clarity and energy, For years...
  28. J

    NIH post-infectious CFS study

    Why are they recruiting patients with really bad criteria? I thought they were getting their patients from our specialist? Mainly I wanted to ask, is there a game plan if this moves forward and they keep the bad researchers and bad controls? So far it looks like they are going forward as is...
  29. J

    NIH intramural research program update

    Good god are we up to 4 investigators who have public statements supporting the CFS is a psych problem theory? Talk about whack a mole. We just started trying to get rid of the first guy and three more pop up. At this point if these are the people involved I will advocate to put the whole...
  30. J

    Action alert: Fri 6 March: register on reddit to upvote Dr Mady Hornig to the front page & ask qns

    Yes, SOC and Soundthealarm21 I realize I made a mistake and tried to let Emily Litella (Gilda Radners character who is always going on about something she totally misunderstood and makes a fool of herself, then realizing her mistake says "Never mind" for those of you who aren't old and from the...