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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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  1. Ren

    The IOM clinician's guide is out

    As stated earlier, CCC and ICC diagnostic criteria include neurosensory disturbance (sensory impairment). So, what do the ME experts who wrote and/or support CCC and/or ICC think about this change? And again, recognition/validation of these neurosensory disturbances affects an individual's rights.
  2. Ren

    The IOM clinician's guide is out

    These symptoms are among my very most debilitating, all day every day going on seven years - though they were even far, far more extreme at onset. I end up in the same place, so to speak, following physical activity or cognitive activity (which can include exposure to light and sound -...
  3. Ren

    The IOM clinician's guide is out

    And one more in continuation of posts 32 and 35: Hallmann et al. state that social institutions are ignorant of or ignore disabilities/impairments common to individuals with ME/CFS [postexertional neuroimmune exhaustion PENE and neurosensory disturbances]; for example, a significantly lowered...
  4. Ren

    The IOM clinician's guide is out

    Building on my post 32 above and borrowed/adapted, in part, from a thread/post by Nielk: http://forums.phoenixrising.me/index.php?threads/comparing-the-iom-criteria-to-the-ccc-criteria.35765/#post-562254 Others elsewhere have pointed out that sensory bombardment is a type of torture. I...
  5. Ren

    The IOM clinician's guide is out

    Neurosensory disturbance as a form of sensory impairment. The following came to mind (though I may have just missed it being mentioned elsewhere) that: pwME/CFS experience fatigability related to neurosensory disturbance: “sensitivity to light, noise, vibration…sensory overload”. Individuals...
  6. Ren

    *Having read the full IoM report*, do you think it was written to help allow insurers avoid paying?

    At least one EU country already denies long term coverage to pwME/CFS who also have a psych diagnosis; Even when the psych condition is a secondary development - for example, following prolonged abuse within and by the country's socialized healthcare system and its workers. ------------ EDIT...
  7. Ren

    Best US Docs?

    Thanks, Sushi (and melamine and deleder2k). I'll comb through things. I assumed it was pretty doubtful that the cream of the crop would be within my reach, but you don't know unless you ask / look around a bit! And I thought being more familiar with who's who might help me access any...
  8. Ren

    Best US Docs?

    Which ME/CFS physicians in the US have the highest rates of significant patient improvement? (This is a desperate - "What else can I do?? What else - if anything - can I afford to do? What can I one day hope to afford to do?) Post a response or PM me. Thank you in advance. .
  9. Ren

    Psychology Today Opinion piece regarding the IOM release

    Thanks, Bob. I saved a copy too and submitted the link to http://archive.org/web/ so this piece will (hopefully) remain in easy public access. I (and someone else, according to the archive website) did the same with the piece halcyon (#17) mentioned too. From what little I know, the only bad...
  10. Ren

    IOM and the name game

    It could be argued that a new name/criteria creates another layer of confusion and chaos, while bureaucrats (1) dump a term (CFS) they've long been criticized for - and (2) avoid adopting CCC or ICC? Where's significantly increased funding for biomedical research? Where's acknowledgement of...
  11. Ren

    Yes vs No - respectful discussion

    What works - and why? What doesn't work - and why? This was from a writing course I once had. The instructor made us use the above formula when critiquing each other's texts. It's simple, but it seemed to help generate useful comments.
  12. Ren

    IOM and the name game

    Good points. Maybe it's fairly common knowledge, but I only recently learned that "the flu" / "influenza" is from Italian "influence", as it (the flu) was perceived to be the result of "unfavorable astrological influences". Since pwME often describe disease onset as following a flu-like...
  13. Ren

    Prayer Tree for January & February 2015

    @Gingergrrl Branch and root for me as well. Thank you.
  14. Ren

    Update on Karina.

    I'm sorry - I don't know. I just recalled that someone had shared the info on the Justice for Karina FB page. To my understanding, this site http://justiceforkarina.webs.com/faq is linked to the FB page, and there's contact info there, and so I guess these might be the folks who would really...
  15. Ren

    Update on Karina.

    Amnesty refused to assist in abuse against ME patients even before poor Katrina [edit - Karina]. As last I understood, their primary focus (in Europe at least) is on gender-neutral ID cards.
  16. Ren

    This is what we're up against

    A number of us can also do screenshots and privately save/document comments, should anyone want/need them for future legal action, reporting, etc.
  17. Ren

    Update on Karina.

    I think cultural issues are at play too. From an outsider perspective (and many things in life are double-edged swords of course - so there's much good as well), Scandinavian societies can feel intensely focused on conformity and unquestioning obedience to state experts. Maybe it's akin to how...
  18. Ren

    Update on Karina.

    I suspect the Danish government has used Karina as a lab rat so psychopathic doctors could have a test subject for their hypotheses and so insurance (public and private) could deny long term disability insurance [and/or proper treatment] to probably tens of thousands of people in Denmark (and...
  19. Ren

    At least 60 Canadians experienced debilitating illnesses after Gardasil vaccination

    Observations: Gardasil belongs to Merck & Co., who also publishes the Merck Manuals medical reference books. A free-access Merck Manual entry describes CFS (with recommendations of CBT/GET, etc.) here...
  20. Ren

    HHS already spruiking the benefits of CBT and GET

    " If it's not been mentioned elsewhere (and in addition to the above) -- The NIH "Medline Plus - Trusted Health Information for You" CFS page was updated 15 January 2015 with a reference/link to the "Therapists must end patients' fear..." article. (See also archive.org.) Said reference/link...
  21. Ren

    Medscape: CFS: Wrong Name, Real Illness

    For all I know, "Ofeigur Thorgeirsson" could be the "John Smith" of Icelandic names, but... http://wcrxfmstandby.wordpress.com/2013/10/31/iceland-airwaves-day-two-hellvar-quadruplos-and-cousins-1031/ http://eng.velferdarraduneyti.is/...
  22. Ren

    The P2P Draft report is out

    From the other P2P thread, Bob wrote: Does anyone remember which study/researcher (Price? Prince??) claimed to use patients diagnosed according to Fukuda, but in reality, they did something like accept patients with chronic fatigue minus the other Fukuda requirements? I thought this might be in...
  23. Ren

    de Meirleir's involvement in 'catastrophisation' studies

    + posts 25, 31, 42 (culture of power) http://www.nytimes.com/2014/12/21/magazine/the-unbreakable-laura-hillenbrand.html?_r=0 .
  24. Ren

    Nonpharma = No Risk

    Thanks @WillowJ. I knew of the Kindlon paper, but I don't recall seeing the other references before. With the idea of context in mind, I believe P2P also had an exercise themed workshop some time ago. I keep tripping over words - but I'm concerned that contemporary societal problems (in the...
  25. Ren

    Nonpharma = No Risk

    I. Don't test, save money. Advise CBT and exercise. Since some people group ME/CFS with Fibro as central pain syndromes, I wanted to note a November 2014 Medscape article. More precisely, this is a physician training tool focused on Fibro. References include Clauw and Wessely. I believe this...
  26. Ren

    The P2P Draft report is out

    Just a recent thought... The draft report acknowledges the stigma associated with ME/CFS, and this is good. But Per Fink (and others?) has also said how patients are treated so poorly by medical personnel, etc. and have no help, and so that's why he works so hard to help such poor patients...
  27. Ren

    The chronological events of the HHS contract with the IOM

    General info peripherally related to the IOM timeline... Under (P2P) “Other Programs and Events” are references to: the Consensus Development Program (for controversial medical issues) and Medicine in the Media (to help journalists evaluate and report medical issues “in the most accurate way...
  28. Ren

    The P2P Draft report is out

    Question, please. @Sasha (or to anyone): Is Phoenix Rising, as an organization, submitting comments on the draft report?
  29. Ren

    Laura Hillenbrand Interview on Face The Nation

    Snagit ("a screenshot program") seems pretty easy to use, and I believe you can test it out a few weeks (months?) before purchasing it. http://en.wikipedia.org/wiki/Snagit The recent (Dec 9?) Hillenbrand NBC video was archived at this website: https://archive.org/details/tv. The CBS video in...
  30. Ren

    The P2P Draft report is out

    I've only read here and there on this thread, and it's a bit too long for me to tackle (now at least). That said, I just wanted to share a couple of thoughts associated with post 461 :) above. Re statement 1 - "cost to the US economy..." I see that this statement is related to the economy, but...