• 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. sue la-la

    A 50,000 Foot Overview of Major ME/CFS Theories

    superb topic :star::star::star: i remember a list of criteria for ME causation theories ... does anyone have a link ? eg the causation theory needs to take into account - the epidemics and the sporadic cases - the gradual onset and sudden onset - the different pathogens involved - how it...
  2. sue la-la

    Link to full article to BMJ's Best Practice for ME

    i'm perplexed by "Pathophysiology" on page 6 - which includes an extended discussion of theoretical "Excessive or burned out stress responses" and "Rape-induced paralysis or immobility when under fire in battle". since when did random speculation have a place in an evidence-based clinical...
  3. sue la-la

    Beware homepathy

    hah !! thanks for fixing my faulty comparison :)
  4. sue la-la

    Beware homepathy

    separate to the homeopathy discussion .... low dose naltrexone DOES have a different effect than full strength ...
  5. sue la-la

    My doctor won't take me seriously

    is it possible for the ER doctor to send a letter to your normal doctor, confirming the diagnosis of serotonin syndrome ? that might stop the pressure to take SSRI. then you can get sick leave money. then you find a doctor who is less ignorant ...
  6. sue la-la

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    apologies - i've cancelled this project because my brain imploded Transcriptions of the Community Symposium (Sat 12th) i'm hoping to transcribe the 2 talks by Chris Armstrong, and Neil McGregor (University of Melbourne). i will post them in this thread, when ready - hoping others might...
  7. sue la-la

    Community Symposium: DVD, YouTube, Livestream!

    perhaps volunteers could transcribe the talks, for those people who need text ? i can volunteer to do a tiny bit, but imagine it would take a bigger team of volunteers, & some co-ordination / proof-reading.
  8. sue la-la

    D-Ribose

    i take d-ribose in a milkshake - with whey protein (incl cysteine), rice milk, cocoa powder & a dash of pink salt. it's especially useful when my muscles are exhausted after a minor activity - it gets them back to non-painful within a few days, instead of a few weeks.
  9. sue la-la

    Managing Pots in Public... lay on the ground?!

    not as effective as a portable seat, but ... if shopping, lean your upper body over a shopping cart - it brings your head lower to ground, so better blood flow. for queues - move your weight from one leg to another, pumping leg muscles to help pump blood. if half-faint in shops - half lie on...
  10. sue la-la

    The energy generators inside our cells reach a sizzling 50°C

    same here - ridiculous sensitivity to the cold, for a few years before ME hit me.
  11. sue la-la

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    @Quemist thank you for sharing your experience. i'm wishing you much better days ahead :heart::star::bouquet:
  12. sue la-la

    Did you have any problem with aerobic exercise before becoming ill? Like childhood?

    - age 0 to 10, I got tired easily, hated sports because clumsy & slow. very low iron levels. - age 11 to 24, always last in long distance runs (I had to walk 95%), out of breath & dizzy tired when playing clarinet. started cycling and became physically stronger, but still very slow. POTS...
  13. sue la-la

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

    the full transcript is now available. :) https://www.dropbox.com/s/mkbgukj89tlcnka/20170307%20-%20Ron%20Davis%20-%20transcript%20of%20video%20Q%26A%20-%20v0.3.pdf?dl=0 (version 0.3 - fixed 'impedance' and 'yeast' - @Ben Howell)
  14. sue la-la

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

    here's a transcripf of the video. please let me know if there are errors/corrections/suggestions. https://www.dropbox.com/s/mkbgukj89tlcnka/20170307%20-%20Ron%20Davis%20-%20transcript%20of%20video%20Q%26A%20-%20v0.3.pdf?dl=0
  15. sue la-la

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

    i'm attempting a transcript - if anyone else wants to help with a section, please contact me ...
  16. sue la-la

    Petition: Opposing MEGA

    i found this on the interwebs ...
  17. sue la-la

    Whey protein powder to address ME/CFS metabolic issues being identified by researchers - which one?

    I've been taking dymatize iso-100 for three years now. Seems to be helpful, and is easy to digest. I started with 1tspn, once a day, blended with 200ml rice milk, 1tspn d-ribose and 1tspn cocoa powder (ie a chocolate milkshake). Gradually increased to 3tspn, twice a day. I can't tolerate...
  18. sue la-la

    HLA DR in 23andMe Gene Set

    http://www.eupedia.com/forum/threads/31911-SNPs-linked-to-HLA-DR-types-in-Europeans-Caucasians
  19. sue la-la

    Psychosis may be an immune disorder

    NMDA is a single receptor. there are thousands of other processes that could become dysfunctional, and affect our central nervous system. i'm guessing that 85-99% of all psychiatric disorders, are actually biomedical disorders.
  20. sue la-la

    Cervical spine stenosis as a cause of severe ME/CFS and orthostatic intolerance symptoms

    this is me - narrow cervical spine (9-12mm) with osteoarthritis, and bony spurs jutting into the spinal canal - long term, and often quite painful - with loss of sensation in my legs and arms. i also meet every single criteria on the Canadian Consensus Criteria (diagnosed by an ME specialist)...
  21. sue la-la

    Radio on ME/CFS Sat 5th Nov 9-10amGMT

    If Crawley is now their most persuasive speaker, they may have a problem ...
  22. sue la-la

    E. Crawley: Time to end the damaging battle over chronic fatigue syndrome

    from a related thread, about Crawley's BBC Radio Bristol interview ... Transcript of Radio Interview - Esther Crawley & FITNET (also available as a PDF, at end of post ...)
  23. sue la-la

    Radio on ME/CFS Sat 5th Nov 9-10amGMT

    Maggie, apologies, i fixed some typographical errors, and edited the post. try the link at the bottom of the post - it should download to your computer ?
  24. sue la-la

    Radio on ME/CFS Sat 5th Nov 9-10amGMT

    Transcript of Radio Interview - Esther Crawley & FITNET (also available as a PDF, at end of post)
  25. sue la-la

    Aquatic therapy as treatment intervention for CFS: a pilot study (Australia)

    It's perplexing that so many exercise physiologists and rehab specialists DON'T UNDERSTAND that our metabolism is broken - and that increasing activity can cause long-term harm. I'd prefer that research money is spent on identifying & treating the physiological causes of our fatigue. When...
  26. sue la-la

    Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

    does the metabolomic testing require extra-fresh blood samples ? for people not in the US/UK, would international shipping delays make the testing unreliable ?
  27. sue la-la

    Dr Rashmi Cabena

    $1500 doesn't sound right - the initial consult at CFS Discovery, including testing, costs $781.50 ($675 with medicare rebate, less with medicare safety net). that includes a VERY long consult to understand your full medical history, and lots of testing. additional consults from $105 to $300...
  28. sue la-la

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    or that gremlins attacked ... true story ... http://me-pedia.org/wiki/Biopsychosocial_model#We_have_been_attacked_by_gremlins
  29. sue la-la

    #MEpedia: Page on Exercise

    i can do the coding - ie converting naked url into a formal reference/citation - but won't be able to start for 6-8 weeks. if you type it this way <ref>https://www.drugs.com/monograph/acetaminophen.html</ref>, it's still a usable link, and the extra info (authors, title, date, etc) can be added...
  30. sue la-la

    Naviaux Study Info Imbeded In Collaborator's Blog Post

    Duncan, there is a possibility - that Naviaux and Lipkin both have inside knowledge, that all the mislabelling is nonsense, and most/all of the 'PTLDS' and 'functional disorder' people have very real, objective pathologies (including mitochondrial dysfunction, immune dysfunction, and chronic...