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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. LiveAgain

    Live tweeting from IiME conference, Friday 3 June 2016

    Thank you for the tweets, I've been following. Will the presentations be recorded and available online at some point?
  2. LiveAgain

    Today: Videocast of NIH Council Meeting to authorise major ME/CFS funding - Thursday 26 May 2pm EDT

    Oops and thank you @Kati too.. didn't see your response above NielK's.
  3. LiveAgain

    Today: Videocast of NIH Council Meeting to authorise major ME/CFS funding - Thursday 26 May 2pm EDT

    I don't see anything about ME/CFS when clicking on that link. What do we do once we get onto the page?
  4. LiveAgain

    Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

    Yes! I was hoping with the FMD group gone, the related doctors would go too. No clue what, if any role they play now.
  5. LiveAgain

    Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

    That's not what I'm saying. I'm saying Hallett compares "CFS" to the psychosomatic conditions he studies, therefore I'm concerned he's biased - like Walitt. How do we know which patients he's referring to in the article? He says "CFS" and I doubt he sees a distinction between M.E. or CCC CFS...
  6. LiveAgain

    Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

    Fukuda and Oxford CFS aren't MUS either, he made that leap ..so I'm not sure of your point. And I doubt handing him or any psychobabbler a copy of the CCC would make any difference. I don't think they're easily converted. But thank you for understanding my concern.
  7. LiveAgain

    Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

    What does it matter that it's a review article @viggster? The paragraph where he mentions CFS are his own words, he's not referencing anything. It's an article about psychogenic movement disorders (he calls MUS) and gives other examples of what he thinks are MUS.. CFS and Fibro. He may not...
  8. LiveAgain

    Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

    Okay, so what do you think of the FMD neurologists on board? Would you feel comfortable having doctors with a focus in "psychosomatic" illness analyzing your brain scans? I wouldn't. Here http://www.neurology.org/content/84/14_Supplement/P3.008 Maurer and Hallett say: "Autonomic activity is...
  9. LiveAgain

    Plasmapheresis study at Berlin (Charite Prof Scheibenbogen)

    Oh okay, I wondered if you knew specifically which ones. I can't access the paper you posted. Like here they talk about B1 and B2. http://jaha.ahajournals.org/content/3/1/e000755.full And there's M1-M5 https://en.wikipedia.org/wiki/Muscarinic_acetylcholine_receptor Maybe you can find out...
  10. LiveAgain

    Plasmapheresis study at Berlin (Charite Prof Scheibenbogen)

    Were you positive for the autoantibodies and if so, may I ask which ones? Also, do you know all of the ones they tested for? And finally, do you have POTS or any form of orthostatic intolerance/ dysautonomia? Thanks for sharing your experience and I hope the treatment helps you.
  11. LiveAgain

    Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

    An NIH contact person will be useless if they refuse to *really* address patient concerns. My biggest issue was and still is the psychologizers involved. Does anyone know if this petition has been delivered? Any response? I hope Dr. Nath's response isn't THE response...
  12. LiveAgain

    Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

    Yes exactly. Just to clarify, I don't think FMD is psychosomatic. They have non epileptic? seizures, tics, dystonias etc. I think it's real biologic illness labeled psych and I hope they get some real research too. We asked repeatedly early on why FMD was included as a control and got no...
  13. LiveAgain

    Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

    Yes, this and only this is what it should be about, but they muddied the waters from the start with the psych stuff. If they hadn't, maybe there wouldn't have been the backlash they're now complaining about. Their fault. By the way, I get the impression none of that was his idea. He seems...
  14. LiveAgain

    Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

    I wasn't going to say anything more but I can't take it. The individuals in charge of this study caused this problem by including doctors who have written or stated that ME/CFS is psychological, plus added a psych control group (still no good explanation why). And now they're upset that...
  15. LiveAgain

    Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

    That's awesome. Hope his tone is nicer when interacting with patients through e-mail than it was in the webinar. I can only go by what I heard today and he seemed annoyed and a bit dismissive when "addressing" patient concerns. Disappointing but no sense going on about it.. it is what it is...
  16. LiveAgain

    Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

    Well I'm not sure how NIH works.. as far as how scientists are assigned to projects. I assumed their boss gives them a job and expects them to do it. Scientists who are truly looking for biological causes have no reason to not want their name associated with the project. The ME/CFS community...
  17. LiveAgain

    Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

    I think he's just unfamiliar with the history and doesn't understand what all the fuss is about. I'm excited about the science and I'm sure he's brilliant, but not loving the attitude. It's like they're doing us a favor and we should just shut up and be grateful. What other disease is treated...
  18. LiveAgain

    #MEAction: Keep PACE out of WebMD and HealthDay

    Oh, there we go.. they already have plans to work on the CDC site. Yay. Then Mayo and others will have no excuse to keep out of date, harmful information up. "This new effort from the CDC is significant since the ME/CFS community has long been concerned that information on the CDC website is...
  19. LiveAgain

    #MEAction: Keep PACE out of WebMD and HealthDay

    That might be a good idea because in thinking about this, I was wondering how can we request Mayo revise their site when CDC still has sections dedicated to exercise and CBT.
  20. LiveAgain

    #MEAction: Keep PACE out of WebMD and HealthDay

    Done, thank you for making it so easy with the links and sample letters. So agree about Mayo Clinic. They are the worst! and many doctors rely on them for information. I guess we'd need a different letter for them though and I'm too foggy to take it on but if anyone else can come up with a...
  21. LiveAgain

    Question for former athletes/fitness rats

    I've found it interesting (and odd) that many people who develop POTS (and perhaps also have ME) were athletes at the time. There's a doctor in Sweden who has been looking at a possible association between Gardasil vaccination and young women developing POTS. She has observed that many were...
  22. LiveAgain

    Updated NIH reponse to CFSAC recommendations

    @Justin30 I think they're doing tilt and sweat tests so they may be thinking along these lines. Would love to see skin biopsies too though.
  23. LiveAgain

    Dr David Bell joins Open Medicine Foundation board

    @Justin30 I'm no scientist either and have a very simplistic understanding of this stuff but my understanding is there are small fiber sensory nerves and small fiber autonomic nerves. If the sensory nerves are affected, you get burning, tingling, itching, numbness etc. and if autonomic nerves...
  24. LiveAgain

    Dr David Bell joins Open Medicine Foundation board

    @Justin30 I had the Daxor blood volume test twice about 8 years apart. The first one came back normal and a recent one came back mildly elevated. I had the skin biopsy for SFN which came back very abnormal. I had another done a few months later (long story) which came back normal. This...
  25. LiveAgain

    Dr David Bell joins Open Medicine Foundation board

    I have POTS and normal or slightly high blood volume. My POTS is due to small fiber neuropathy.
  26. LiveAgain

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

    Oh believe me, I didn't mean to imply Walitt is experienced and I hate that he's involved. Maybe I didn't phrase my question well. I'm just asking who they could put in that role from NIH that would be acceptable to the patient community? I'd be okay with doctors new to the field who are...
  27. LiveAgain

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

    I think this is exactly what happened. Question because I'm not sure how this works.. if they were willing to replace Walitt (and others), who do they put in their place, assuming they have to come from NIH since this is an NIH study? and there are no doctors there with real ME/CFS knowledge...
  28. LiveAgain

    Has anyone had their blood volume measured with the Daxor BV-100?

    Yeah I was surprised, but I do have small fiber autonomic neuropathy which is likely causing my symptoms instead. I gather you had the test and it showed low blood volume? Have you tried treatments to address this and has it helped any of your symptoms?