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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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Search results

  1. aimossy

    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    Jo Cambridge from UCL covered some interesting things regarding energy metabolism in B cells at the RME Sweden ME/CFS conference just recently. She gave some snippets of what Chris Armstrong and Fane Mensah (spelling?) were collaborating and working on with metabolomics too including some...
  2. aimossy

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    I am not sure if the project reporter information on the NIH CRCs have been posted here yet. Jenny Spotila gathered links to them all. Cornell Center: https://projectreporter.nih.gov/project_info_description.cfm?aid=9479859&icde=36166731...
  3. aimossy

    Fecal metagenomic profiles in subgroups of patients with ME/CFS

    I had that exact same experience!
  4. aimossy

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    Will the charities be able to let this latest unethical behaviour regarding EC at #scidata17 and TEDx slide and continue to associate with EC - or will they now have to take a stand?
  5. aimossy

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    They may be counting Alan Bec as their counter speaker. https://tedxbristol.com/speakers
  6. aimossy

    25 Oct E Crawley speaking at Better Science Better Data event......

    I hope someone is able to record the livestream of EC talk with a phone somehow or something - just in case her talk gets scrubbed from the record due to social media reaction.
  7. aimossy

    Solve ME/CFS Discovery Forum Saturday 14 October - live coverage

    FB live feed of Zaher Nahle talking at #DiscoverMECFS17 is here: https://www.facebook.com/SolveMECFSInitiative/videos/10154953632912108/
  8. aimossy

    "Enzyme Behind Immune Cell Response Revealed"

    From the Introduction: From the discussion section: Mady Hornig has stated previously (not published) that asymmetric dimethylarginine was notably low in their cohort findings.
  9. aimossy

    Columbia University's NIH funded Center for Solutions for ME/CFS - news and updates

    I haven't seen Lipkin or Hornig mention that they would use tissue sampling in any study yet.
  10. aimossy

    Columbia University's NIH funded Center for Solutions for ME/CFS - news and updates

    Thanks so much @AndyPR I have edited with your correct link!
  11. aimossy

    Columbia University's NIH funded Center for Solutions for ME/CFS - news and updates

    Not enough resources though. We need all the centers funded properly, and more centers as well as hundreds of extramural grants funded. Edit: In my opinion in the big picture that is..
  12. aimossy

    Columbia University's NIH funded Center for Solutions for ME/CFS - news and updates

    I think this involves the Tru Culture study and also includes looking at bacteria, contaminants, toxins and even airborne ones among other things. They can expose cells to many different variants in incubator tubes to see how they react. If this link takes you to the right place - Mady Hornig...
  13. aimossy

    Columbia University's NIH funded Center for Solutions for ME/CFS - news and updates

    It's worth reading the full write up by Simmaron.
  14. aimossy

    Grey and white matter differences in Chronic Fatigue Syndrome

    Although I am not keen on the conclusion terms I hope someone who knows more about this sort of work may be able to break down the study further because this was a larger size study at over 40 people not including controls. It seems like they can make up any conclusions they want with these...
  15. aimossy

    Grey and white matter differences in Chronic Fatigue Syndrome

    "Elevated GM volume in CFS is seen in areas related to processing of interoceptive signals and stress." :bang-head:
  16. aimossy

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    I understand that and feel if Ron doesn't get the R01 he has put in for then we have major leverage to hammer NIH with.
  17. aimossy

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    I am pleased we finally have some collaborative research centers. I think you also only need to look at Ron Davis, Mark Davis and Snyder's records to know that these researchers are excellent and deserve funding and we need them funded. Excellent teams have missed out. Based on what Ron has...
  18. aimossy

    BBC Radio 4: The Film Programme - Unrest

    I spotted Jen on Twitter saying that DVDs available in December.
  19. aimossy

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Hypnosis? This really seems like a form of hypnosis! Thanks for highlighting this and to the person who wrote about their experience.
  20. aimossy

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Bait and switch? @Cinders66 - to take focus off the actual study.
  21. aimossy

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    I personally agree but researchers/orgs have still worked with her.. I kind of feel that this may be or should be the last straw for them in continuing to do so. Edit: It seems like she has crossed a line.
  22. aimossy

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    She hasn't been which is why people are still working with her and she has access to cohorts? I appreciate the sentiment though. You would think this line has now officially been crossed!?
  23. aimossy

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Esther Crawely needs to STOP - spin round in a circle and chant "I must stop torturing people with ME/CFS" Can this Paediatrician now be officially classed as a quack Doctor?
  24. aimossy

    ME Association Summary Report of the 4th CMRC Research Conference 2017

    And many thanks for the summaries!
  25. aimossy

    ME Association Summary Report of the 4th CMRC Research Conference 2017

    I dont know about how other people feel about this Charles but I personally am really fed up with orgs 'seemingly' competing and digging at each other.. this just seemed like another instance of this.
  26. aimossy

    ME Association Summary Report of the 4th CMRC Research Conference 2017

    It would be really nice to see organisations when they promote themselves that they don't feel the need to disparage other organisations that also contribute and make important efforts. This did read like a hype sell in concert with a smarting kick in the shins to other organisations.
  27. aimossy

    The Real Problem With Chronic Fatigue Syndrome (ME/CFS) Funding: blog by Cort Johnson

    The amount of work needed to address the stigma and bias is huge and also the work needed to tackle congress. The NIH are issuing enough funds for some collaborative centers and a data management center to set up some crucial infrastructure and do some investigative research. But the amount for...
  28. aimossy

    The Real Problem With Chronic Fatigue Syndrome (ME/CFS) Funding: blog by Cort Johnson

    The standard grant process caters for hypothesis driven research and not investigative research and as a whole Korochetz stated 12% of the grants in the standard process get funded. There are only a couple of grants available outside hypothesis driven work from what I have been able to see. One...