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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. Rick Sanchez

    Prof Michael Sharpe of the PACE trial admits on twitter that ME & CFS should have been kept separate

    I actually hate this trail of thought. It makes it appear as if some patients in PACE actually had some sort of benefit from CBT or GET. When the fact of the matter is that despite the absurly broad criteria of entry, they couldn't prove that CBT or GET was beneficial to ANYONE in the study.
  2. Rick Sanchez

    Despite being exhausted, do you have trouble sleeping during the day?

    Yep. I have experience exactly the same thing with worsening ME/CFS. Unless I feel completely terrible and am unable to do much I won't be able to sleep, during the day that is. I miss being able to sleep, and being able to actually enjoy sleeping :(
  3. Rick Sanchez

    What effect does getting drunk have on you?

    Getting drunk, or as I like to call it a week of the PEM flu
  4. Rick Sanchez

    Dr David Tuller:Trial By Error: The Crawley Chronicles, Continued 29 NOVEMBER 2017

    If we are lucky they will be researching SEID next!! Fingers crossed buddy!
  5. Rick Sanchez

    Well here's a treat: Two videos of Ms Crawley, leading ME researcher, (!) delivering her TEDx talk

    A lone beacon of intellect. Such an inspiration. So brave. No one has done more for helpless and abandoned children in Britain since the catholic church. My prayers go out to Ms Crawley. May the heroic work you have done never be forgotten in the annals of history.
  6. Rick Sanchez

    Cytokine signature in chronic fatigue syndrome

    Just in case people do not know who ''Jos W. M. van der Meer'' is. From his wiki page Is this some sort of fucking joke? Successful CBT = recovery in CFS patients? CFS seems to be a central disorder of BODILY PERCEPTION!?!?! To be honest, the Dutch CFS researchers seem by far to be the worst...
  7. Rick Sanchez

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

    This piece was great. Also loved how Jen was allowed a rebuttal against the coward... Sorry I mean respectable nameless neurosurgeon. I honestly feel like vomitting every time I see Theguardian writing some piss piece on ME/CFS where they always end up with some fraud who spouts out some...
  8. Rick Sanchez

    Dr Phil Hammond talks to Jen Brea about Unrest this morning on Radio Bristol

    The point Solstice is making is actually an incredibly important one. Even in the ME/CFS community a lot of people seem to think that some people in the various CBT / GET trials have been benefiting from CBT / GET. What PACE and other trials seem to show is that actually no one, benefits from...
  9. Rick Sanchez

    Documentary: Undercover in German Lyme Clinics

    Almost no ME/CFS patient group has received as much neglect as the Danish patients. Sadly, this has turned a lot of them into paranoid loons. Most of them seem to believe that almost everyone is involved in some grand conspiracy against them. Which is of course absurd, especially because Fink...
  10. Rick Sanchez

    Documentary: Undercover in German Lyme Clinics

    Mattie I am so sorry to hear about your experience. But kudos for posting this video! I would argue that 95 % of all ME/CFS patients have fallen for sham tests / treatments during their illness (I know I have), and it is incredibly brave of you to come forward and share your experience. The...
  11. Rick Sanchez

    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    I have studied law, and you clearly do not know what you are talking about. Secondly, regarding my comment. KDM has absolutely NO sound evidence that his treatments work. Please inform me of how many of his treatments have showed significant results in a double blinded trial with a high number...
  12. Rick Sanchez

    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    For me, the most distressing part about Dr Meileirs treatment is that it might very well be harmful for ME/CFS patients. It is clear that the disease is extremely complex and when even mental and physical exertion can worsen the disease in patients, then it should come as no surprise that...
  13. Rick Sanchez

    ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

    I am from Denmark where ME/CFS is classified as a functional somatic disorder. I have to stress that it is of the greatest importance that ME/CFS does not get classified as a functional somatic disorder in the UK. Denmark actually used to be one of the leading countries in ME/CFS research, but...
  14. Rick Sanchez

    Guardian article "I had CFS. the Lightning Process at least offers hope."

    Almost looks like Theguardian is actively baiting all the dangerous militant ME/CFS activists out there with all these quackery articles. Better watch out, there will be riots soon, and someone might have a soiled sock thrown at them if things keep on escalating!!
  15. Rick Sanchez

    Is psychotherapy for functional somatic syndromes harmful? A mixed methods study on negative effects

    Ah yes. Forskningsklinikken for Funktionelle lidelser. Sadly, being from Denmark I am somewhat of an expert on this area. These guys, especially Fink and Schröder (who is also as obnoxious as he is arrogant) are complete wackos, who do not believe ME/CFS to be a separate disease entity at all...
  16. Rick Sanchez

    A Entire State Goes ME/CFS: Nevada Congressional Breakthrough - the First of Many?

    Emily is such an inspiration when it comes to ME/CFS advocacy.
  17. Rick Sanchez

    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    I figure you are correct. The statements made by #6 do come across as borderline bonkers. Either the person is completely inept, or the person hasn't been in the game long enough to have learned the mind-body-duality boogaloo.
  18. Rick Sanchez

    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    Disturbing reading. Whoever #6 is, we know that the person is someone with a hard on for the umbrella term somatic functional disorders, this also precludes the person from being someone like White, who has been critical of somatic functional disorders in the past. My guess would be someone...
  19. Rick Sanchez

    Sign the petition and help Dutch patients: "ME is not MUPS"

    What the hell '' The results clearly showed that CBT and GET improved both symptoms and disability more than the other two treatments.'' So suddenly self-reported improvement in function and fatigue is equal to reduced disability? This is absurd!! These morons make my blood boil, at least it...
  20. Rick Sanchez

    'Independent' PACE TSC member speaks on MUS at British Infection Association

    Only a sith deals in absolutes
  21. Rick Sanchez

    'Independent' PACE TSC member speaks on MUS at British Infection Association

    What amazed me when I read about Functional Somatic Disorders, Medically Unexplained Physical Symptoms and Bodily Distress Syndrome was that even White (yes our White), disagreed with Wessley over the Functional Somatic Disorders. It was an odd feeling agreeing with some of White's arguments...
  22. Rick Sanchez

    Unknown PACE-trial advocate tries to block JHP issue dedicated to the trial

    Yes. I just read an interview with a Danish ''scientist'' who claimed that the criticism of PACE could not possible be correct because they were released on online blogs, and not in published journals. This criticism was from a couple of months ago, I think I will be reaching out to the editor...
  23. Rick Sanchez

    Remember to ''like'' good ME/CFS posts on Facebook

    Hey everyone Firstly, I was not sure where on this forum I should be posting this. This is going to be a short post, but I find it to be very important nonetheless. The topic is advocacy, and how you can help spread more awareness with very little effort. I used to work successfully with...
  24. Rick Sanchez

    HANSON, FLUGE AND MELLA JOIN OMF SAB!!!

    This is amazing news!!! Davis already strikes me as an incredible pragmatic scientist, but I definitely see it as a boon to have some Scandinavian pragmatism on the advisory board. Very proud Scandi!
  25. Rick Sanchez

    Ron Davis featured in "nature" journal of science article

    While it is true that there was increased awareness, the coverage of the Karina in Denmark was actually borderline abysmal. The only good coverage of the case was actually in one of Denmarks famous tabloid papers. Most major outlets barely covered the case, and if they did so the coverage was...
  26. Rick Sanchez

    Ron Davis featured in "nature" journal of science article

    The movie ''Unrest'' has done loads to change the narrative in Denmark already. It is actually quite incredible. A lot of people whom I know and who had previously never heard about CFS have read about the movie in some very well written articles. I feel like the movie could have an even bigger...
  27. Rick Sanchez

    "Unrest" updates

    http://politiken.dk/forbrugogliv/sundhedogmotion/art5874906/Deres-celler-er-syge-–-læger-og-venner-siger-de-bare-skal-tage-sig-sammen The article in Politiken is pretty amazing. The journalist displays both a thorough understanding of the recent developments in CFS research and also manages...
  28. Rick Sanchez

    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    This might be because of too much sunburn. Being out in the sun from 12-3 often fatigues me.
  29. Rick Sanchez

    Ben and Claire's adventure to Davis-Dafoe land!

    Did not know you were so severe Ben. Makes all the work you do for the community that much more impressive. Thank you :)!
  30. Rick Sanchez

    Jen Brea: What happens when you have a disease doctors can't diagnose - TED Talk!

    JenB's argument is not that female CFS sufferers get treated worse than male CFS sufferers. Her argument is that everyone who suffers from CFS and other invisible illnesses are suffering as a consequence of hundreds of years of psychobabble which has historically mostly been aimed at women...