• Welcome to Phoenix Rising!

    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. Asa

    Bedbound - constant struggle - brain on fire

    Hi,Frenchguy. I’m so very sorry you’re experiencing this. Some things which have helped me: a low-inflammation diet, incl. no gluten, limited-to-no dairy, red meat, or even fatty, processed poultry like turkey burgers, and limited-to-no processed sugar or grains, even other than wheat...
  2. Asa

    Bad News for Denmark: ME patients, say new guideline, to be made well by physical training

    Write to Eva Joly? https://en.wikipedia.org/wiki/Eva_Joly
  3. Asa

    Antiviral Research

    This is all very helpful. Thank you so much for sharing.
  4. Asa

    Antiviral Research

    Hello, fellow phoenixes, and well wishes to you all. It’s been a while… Am writing to ask, please, if someone familiar with antiviral research—particularly Valcyte/valganciclovir—, as pertains to ME/CFS, might share the most significant research papers regarding such. A primary care physician...
  5. Asa

    Rituximab Norway - Where, Who?

    Can someone please say where ME patients are accessing Rituximab in Norway? Clinic(s) and/or doctor(s) name? Contact info? Thank you. (Short answers please. Reading ability low.)
  6. Asa

    Would this help anyone with media responses to Dr White?

    "Apart from dietary requirements, that Norma Ware has mentioned, he was also very keen on massage; and his masseurs, if you read his work, were also very interested in talking to the patients." Recalled the following post on the success of physician-administered, orgasm-inducing "pelvic...
  7. Asa

    Medical harms poll (Potential for class action law suit regarding CBT/GET)

    What about harm(s) associated with -- and not sure how to best phrase it, but -- a culture of CBT/GET? So that a patient (in one or more appointments) is told some version of: Your symptoms are imagined. You need to be more active, socially and physically. You need to exercise. You need more...
  8. Asa

    How to forgive

    My thoughts are jumbled, but I'll still try to share... A once friend of a friend used to frequently say, "If it [in reference to whatever topic at hand] were easy, everyone would do it." Perhaps that applies here too. There's got to be books and books and books written on anger, I'm guessing...
  9. Asa

    Question / Animal / Biopsychosocial

    Not sure where to post this.... but was wondering if proponents of the biopsychosocial model ever advocate for it to be implemented into research within the (non-human) animal kingdom. Also, if "medically-unexplained-symptoms" is allegedly valid for humans, why wouldn't it also be valid for...
  10. Asa

    Vitamin D and ME/CFS - relating to new recommendations from Public Health England

    This is straying from topic (and can be moved -- just please say), but just happened upon a TED talk that shares info on research, I believe, which began with Vitamin D, then.... Just wondered if anyone (on the forum) has an opinion on if the above info (UV light/NO/Cardiovascular system --...
  11. Asa

    (not a recommendation) CFS - an update

    Piggybacking to the moon on wingless monkies has shown moderate effectiveness, as determined by influential persons doing important things you can't understand -- and which are top secret! :D
  12. Asa

    Complementary and alternative healthcare use by participants in the PACE trial of treatments for CFS

    For what it's worth, both the Journal of Psychosomatic Research and The Lancet are owned by Elsevier. From wikipedia: "In 2015, Elsevier reported a profit margin of approximately 37% on revenues of £2.070billion.Elsevier's high profit margins, and especially its copyright practices have...
  13. Asa

    Trudie Chalder to speak at Norwegian Research Seminar

    @Cheshire Though it may not have come out well (Sorry!), I did mean it as a compliment to the spirit @Mrs Sowester (post 162) so perfectly described!
  14. Asa

    Trudie Chalder to speak at Norwegian Research Seminar

    Boston Tea Party. Oslo Coffee Cup…. Even Jesus (no matter he be seen as “real” or as a “fictional character”) lost his temper. (Honest) Buddhist monks, who spend years and years and years cultivating patience/love/understanding/compassion, etc. admit to still struggling with anger… Would a...
  15. Asa

    Trudie Chalder to speak at Norwegian Research Seminar

    (If possible) I believe a charge of wasting-police-time should be filed against the person(s) who alleged the complaint. And the healthcare authorities who invited Chalder should be charged with medical negligence, public endangerment, and such. Shameful and sad...
  16. Asa

    Eysenck’s contribution to CBT for physical health problems: fraudulent data

    Only half way through Coyne's (history) piece... Good Lord, the drama connected to this disease never ends! ME history, politics, mad "scientists", real scientists, affected individuals, families, advocates... Somebody needs to write it all up and sell it to Netflix!
  17. Asa

    Eysenck’s contribution to CBT for physical health problems: fraudulent data

    http://web.archive.org/web/20160530200602/http://blogs.plos.org/mindthebrain/2016/05/30/hans-eysencks-contribution-to-cognitive-behavioral-therapy-for-physical-health-problems-fraudulent-data/ :)
  18. Asa

    Luleå Sweden hosts Psychosomatic Conference, EAPM 2016 June 16-18

    Notice of the upcoming European Association for Psychosomatic Medicine (EAPM 2016) conference in Luleå, Sweden was shared by @Denise in the discussion section of another thread --->...
  19. Asa

    Video on individuals at a UK Malingering and Illness Deception Meeting

    Just when I thought I'd heard it all... 2.22 (paraphrasing) CFS(ME?) is fabricated in order to avoid having sex??! (--Dr. Christopher Bass) -------------- All of this was terrible... cruel, sad... Thank you to whoever documented it though.
  20. Asa

    Great ME/CFS & Lyme awareness videos by Ren Gill - must see

    Antares, for what it's worth, I wish you continued strength and of course healing and peace of mind... Hang in there. Thank you for sharing the videos, and thanks of course too to trickthefox for creating them.
  21. Asa

    James Coyne: "Half year passes without release of PLOS One PACE trial data"

    If you provide smoke and mirrors to our liking, we'll release data of our choosing? (PACE is like beer goggles for data!)
  22. Asa

    Sweden: ME/CFS on TV Program "Fråga Doktorn"

    Regarding post #3 question of shortage of neurologists throughout Sweden: a general google search (terms: sverige, brist, neurolog) yielded a first page result of articles/blogs, dating back to 2012, on this shortage. A search with the earlier mentioned terms plus the term "2016" yielded more...
  23. Asa

    Sweden: ME/CFS on TV Program "Fråga Doktorn"

    @mango Thank you for sharing, and thank you of course too to your very brave friend and her husband too. I haven't watched this program series before but found on Wikipedia that Gunilla Hasselgren is the program's "TV-doktor" -- medical consultant? -- and she's worked as a general practitioner...
  24. Asa

    Gemma Climbs Her Mountain - please donate or share & help us go viral!

    "We work in short, sharp bursts and much of the show is interspersed with other things such as our film footage..." singinggem, thank you for your thoughtful response. The above use of time is clever and of course useful. Thank you for sharing, and best wishes in meeting your goals.
  25. Asa

    Gemma Climbs Her Mountain - please donate or share & help us go viral!

    I understand those diagnosed with ME are a heterogeneous population. And I understand that a general audience would not understand the significance of diagnostic definitions/criteria, but does the play mention the criteria by which Christie's character is diagnosed with ME? Also and so I...
  26. Asa

    Trudie Chalder to speak at Norwegian Research Seminar

    "Speak truth to power!" Well done, Marky90, and thank you! No Q/A is ridiculous. The speakers could have made their talks/slides available to *all people* by posting them online pre-seminar (In Norwegian and English?). *All people* then could have posted comments and asked questions--including...
  27. Asa

    Disability Adjusted Life Years - graph source / citation?

    Over and over and over... US and EU governments disappear people with ME. Reminds me of:
  28. Asa

    Fivefold to eightfold increase in the incidence of ME from 1980 to 1989

    @Hip -- Just wondered if you'd seen "Vanishing of the Bees". It made me recall this thread (though I've only read a small bit). The film though mentions the evolution of WWI chemical warfare agents into (and rebranded/used as) pesticides. The film then goes on to discuss systemic pesticides and...
  29. Asa

    Trudie Chalder to speak at Norwegian Research Seminar

    Should it be helpful (though original IOM sources woud be best... ): "...the [US .gov] National Guidelines Clearinghouse, which requires that guidelines comply with the IOM standards for creating trustworthy guidelines. (The NGC is a federal government database that lists guidelines meeting...
  30. Asa

    The PACE Trial Invalidates the Use of CBT & GET in ME/CFS: A Review

    "There was no difference in long-term outcomes between adaptive pacing therapy, CBT, GET and specialist medical care, and none of them were effective, invalidating the biopsychosocial model and use of CBT and GET for ME/CFS..." Question, please. What exactly is meant by "no difference in...