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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. L

    Good article on Jen's film Unrest in The Telegraph today 24th Oct

    I think this is ultimately a matter of allegiance and the perception that one side cares and the other wants to make money. Publications like The Guardian will side with those who are generally regarded as caring as opposed to those who have clear business interests. The divide is roughly...
  2. L

    B cells expressing the transcription factor T-bet drive lupus-like autoimmunity

    Full paper: https://www.jci.org/articles/view/91250 I'd be grateful if @Jonathan Edwards and our more knowledgeable users could comment on this. Based on the current state of knowledge, do the researchers' conclusions that it may be worthwhile to target this subset of B cells make sense - at...
  3. L

    Counter petition to the MEGA petition, brainstorming stage

    @BurnA That's pretty much what I'd like to do: showing my support while also making clear that I'm worried about the inclusion of certain people and patient representatives. Of course, it may be that those who started the petition won't read the comments or ignore them. @TiredSam I have done...
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    Counter petition to the MEGA petition, brainstorming stage

    An alternative would be to vote for the MEGA petition and use the comment to register concerns. I just had a look at the comment section and have seen a few people who have done that. Comments can also be upvoted/liked and are by default sorted to show the top rated first. Critical comments I...
  5. L

    Counter petition to the MEGA petition, brainstorming stage

    I would also see the petition as a way to express support, but support for the study/research. Unfortunately, I cannot sign the MEGA petition as it is, so a different petition that points out the problems with the advisory board would be a good alternative IMO. Personally, I would prefer if...
  6. L

    Counter petition to the MEGA petition, brainstorming stage

    I don't have much time at the moment, but wanted to give my 2 cents as well. I think this petition should focus on the advisory board and not on the research. The message should be that ME patients want to be represented by people who work in their best interest and that this is not the case...
  7. L

    EU Referendum: what it means for ME (+ a poll)

    I find that most discussions about the referendum miss the point. The choice is about sovereignty and democracy. At this point, people can no longer claim ignorance about the nature and objective of the EU. It goes far beyond free trade and single market. It's an attempt to create a unified...
  8. L

    NIH phonecall and Q&A, Tues 8 March

    Silly patients don't realise that the NIH is always unbiased and the protocol won't allow any bias anyway. A bit more seriously though, they surely must be aware that bias is ubiquitous and while protocols and such are helpful in controlling it, they are no guarantee. I guess it would have...
  9. L

    Wall Street Journal article on PACE Trial and data-sharing

    Try deleting the cookies in your browser. That's usually how websites track the number of times you have visited.
  10. L

    #MEAction's questions for NIH’s intramural study team

    I strongly feel that the call needs to be recorded by one of the patient organisations that can listen in, if the NIH won't provide a recording. If the patient community cannot ask question individually (which I don't particularly mind, as long as questions are passed on), it should at least...
  11. L

    Investigating the Investigators of the Upcoming Post-Infectious NIH Study

    Eugene O. Major, Ph.D. Laboratory of Molecular Medicine and Neuroscience (LMMN) Division of Neuroimmunology & Neurovirology, NINDS The NIH website lists him as a Consultant for the Laboratory of Molecular Medicine and Neuroscience, with Avindra Nath as the Acting Chief. He calls himself a...
  12. L

    Investigating the Investigators of the Upcoming Post-Infectious NIH Study

    I'll do Dr. Eugene Major next. As for Elizabeth Unger, do we need to look into her? If I remember correctly, her position has been discussed quite extensively elsewhere, and it's a bit of a mixed bag, but not to the extent that it can be considered detrimental to the study. I might be wrong, so...
  13. L

    Investigating the Investigators of the Upcoming Post-Infectious NIH Study

    Jay H. Chung, Ph.D., M.D. Senior Investigator Laboratory of Obesity and Aging Research From the NIH website: The NIH site lists his publications as well. It's all purely biomedical and highly technical. He wants to understand the biological mechanisms of metabolism in humans, how it changes...
  14. L

    Investigating the Investigators of the Upcoming Post-Infectious NIH Study

    Neal Young, M.D. Senior Investigator, Cell Biology Section, Chief of the NHLBI's Intramural Research Hematology Branch His research focus is on bone marrow failure diseases and he conducted research on immuno-suppressive drugs for aplastic anemia which resulted in the first effective treatment...
  15. L

    Investigating the Investigators of the Upcoming Post-Infectious NIH Study

    It looks like Fred Gill, Stacey Solin and Penelope Friedman have been working together at the Internal Medicine Consult Service since at least 2008. There is info about a clinical elective program for students at the IMCS on the NIH website, which lists all three under staff and is dated 2015...
  16. L

    Investigating the Investigators of the Upcoming Post-Infectious NIH Study

    This may be of interest in general: http://clinicalcenter.nih.gov/about/news/newsletter/2008/nov08/newsletter.html The article is half way down the page. Note that all three in this picture are on the study. From left to right: Dr. Fred Gill, Stacey Solin (middle), and Dr. Penelope Friedman...
  17. L

    Investigating the Investigators of the Upcoming Post-Infectious NIH Study

    Just in case somebody else is still working on this, I'm going to look into these three next: Stacey Solin (Internal Nurse Practitioner) Dr. Neal Young (Hematology) Dr. Jay Chung (Metabolism of Aging)
  18. L

    Investigating the Investigators of the Upcoming Post-Infectious NIH Study

    Eunhee Kim, PhD Assistant Professor of Biostatistics Department of Biostatistics and Center for Statistical Sciences Brown University Email:ekim@stat.brown.edu, Eunhee_Kim@brown.edu Office of Biostatistics, NINDS Email: eunhee.kim@nih.gov He LinkedIn profile says she works for NIH and links to...
  19. L

    Investigating the Investigators of the Upcoming Post-Infectious NIH Study

    Tanya Lehky, M.D. (T Lehky, TJ Lehky, Tanya J Lehky) E-mail: lehkyt@ninds.nih.gov Assistant Clinical Director of Medical Affairs at NINDS Division of Intramural Research Director of Electromyography (EMG) Lab, NINDS, Clinical Neurophysiology Research Program The EMG Section engages in...
  20. L

    Investigating the Investigators of the Upcoming Post-Infectious NIH Study

    Mary R. Lee, M.D. Staff Clinician telephone: 202-641-6068 e-mail: leemary@mail.nih.gov Dr. Mary Lee received her medical degree from Columbia University College of Physicians and Surgeons in 1989. She completed residency in internal medicine at Columbia Presbyterian Medical Center and...
  21. L

    Investigating the Investigators of the Upcoming Post-Infectious NIH Study

    I'll check Dr. Eunhee Kim (Biostatistics), Dr. Mary Lee (Neurobehavioral Psychiatry), Dr. Tanya Lehky (Electromyography - Neurology).
  22. L

    James Coyne talk at Stormont in Belfast, Feb 9 - for professionals - tell your MLAs!

    Cheers, Keela Too. I'll contact the Irish ME Trust to see if they are interested. There will be two events it seems, one for professionals and one open session: http://www.shoutoutaboutme.com/advocacy/7-9-feb-coyne-on-pace-hope-4-me-fibro-ni/
  23. L

    James Coyne talk at Stormont in Belfast, Feb 9 - for professionals - tell your MLAs!

    Does anybody know if this is being recorded? If it is and there is interest for it to be transcribed, I'd be happy to do it.