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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. Ash

    Differentiating Multiple Sclerosis from Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

    I believe they are referring to CFS as the Fuduka only patients & ME as the Carruthers et al* CCC definition patients (* 2003 CCC in the notes at reference #18, not 2011 ICC, both are Carruthers et al so had to check that reference)
  2. Ash

    BBC Radio 4: Children with ME

    That would be bloody amazing! I think given the context that the reporter in question has been burnt by the powers that be in the past on this topic, it makes perfect sense that this time he is playing a more conservative game with the recent radio show, so that a repeat of the attacks on the...
  3. Ash

    BBC interview with Ron Davis

    Perhaps just a note that it may not be as bad as it sounds first rather than totally delete it, until we actually see what ends up on the radio?
  4. Ash

    BBC interview with Ron Davis

    Unless he specifically wanted horrified Americans saying the UK system is barbaric, what you've said and what Janet said don't match up very well at all, almost like there are two BBC reporters? :(
  5. Ash

    Comment by 'Ash' in 'Who Benefits?'

    I think you are right
  6. Ash

    To the Aussies

    During the election campaign I sent Bill Shorten (and others, but he was the only one who sent a meaningful reply) an email template that has been passed around a few disability advocacy groups (QLD Spinal injuries something or other & Queenslanders with Disabilities Network) & he had replied...
  7. Ash

    Concerned about TWiV/Virology.ws & Alan Dove - so I sent an email....

    I got a brief reply from Vincent Racaniello today confirming he was on holiday with his family the last two & a bit weeks & that no disagreement or controversy would prevent him from covering this topic. I like your razor urbantravels :Sign Good Job:
  8. Ash

    relavent cfs tests for aussies in australia

    I'll have to come back to this later & write up a list for my Brisbane trip... Do you think Dr D will know what to run heapsreal or will I have to ask for a list?
  9. Ash

    Concerned about TWiV/Virology.ws & Alan Dove - so I sent an email....

    I was kind of wondering if rather than saturating the blog & podcast with one topic they might be waiting for the upcoming conference to be held rather than cover it now & then again in a fortnight - I mean c'mon, the 3rd human retrovirus family has to have virologists excited no matter what it...
  10. Ash

    Concerned about TWiV/Virology.ws & Alan Dove - so I sent an email....

    Firstly, yes I'm cross posting this on both PR & mecfsforums, I don't see why I should favour either community's population over the other. If moderators feel it is in the wrong section please feel free to move the thread or indeed merge it with an appropriate existing thread, I've burnt off my...
  11. Ash

    http://www.cfidsreport.com By Craig Maupin

    Read that in a link on Facebook yesterday, top read!
  12. Ash

    Seven MLV subgroups with different symptoms

    Kerr's work was 7 human genetic expression patterns matching different symptom patterns within ME/CFS patients, as a guess I would think those variations/patterns would be linked more to pattern co-infections rather than MLV strains, but no one followed it up & Kerr's funding disappeared.
  13. Ash

    NEW - FDA Website Q&A on XMRV, MLV's & Alter/Lo PNAS Study outcomes

    remember this study had bugger all patients & controls so any percentages will have a much higher margin of error - they used an established banked cohort for speed (just like the negative studies)
  14. Ash

    Dr. Alter Paper embargo ends today at 3:00pm, press conference today

    from --> http://www.vipdx.com/order/ Does that mean full on FDA approved test?
  15. Ash

    Dr. Alter Paper embargo ends today at 3:00pm, press conference today

    So news should be out by the time I wake up then (eastern Australia puts it at 6am tomorrow)
  16. Ash

    To the Aussies

    Makes me glad I'm a "grandfathered" client under the old 30hr PW rules, they haven't touched me since my initial assessment in April 2005. I'd actually asked about assistance with training & was advised by the lady at Centrelink's disability & carers line to do it myself & not involve them as...
  17. Ash

    To the Aussies

    Where is the name change coming from? I googled HGRV & the only hits other than this site was some "Eurolyme" blog. ps: Hi Greg!
  18. Ash

    Life After XMRV?

    I'm scared of DSM V & Complex Somatic Symptom Disorder - will the rest of us who end up XMRV- be in Wessely/Reeves town forever? The whole CDC & Wessely neglect thing being exposed should change how everyone looks at it, but will it? I mean, look at MS/hysterical paralysis - that didn't wake...
  19. Ash

    To the Aussies

    Queensland Medical Cooling/Heating rebate bummer about it is a GP can't sign off, you need a specialist & with no specailty looking after ME/CFS, especially in hicksville I can't get it
  20. Ash

    To the Aussies

    Diagnostic criteria section - the 2002 RACP CFS Criteria (Aussie version of Fuduka) --> http://www.mja.com.au/public/guides/cfs/cfs2.html Can't find the Aussie modified version of the CCC atm (was it on the SA site?) *subscribes to thread*
  21. Ash

    Article: The Best XMRV Study Underway? Dr. Singh Talks!

    Loved the TWiV podcast, best one yet. Isn't that wired brain feeling common to both? If I was a little younger I'd probably have both diagnoses (too old by the time ADD/ADHD became "popular" enough to be diagnosed here in Hicksville, I just needed a good beating :Retro tongue: ) I've...
  22. Ash

    Viology podcast - XMRV special with Singh 8th August

    If they manage to replecate the WPI/NCI/CC results without using the CCC (something the CDC have attacked as "abnormal CFS patients", remeber the exclusions in their study?) then really using "just" Fuduka & still replecating it will bite all the those producing negative papers in the arse...
  23. Ash

    New blog by The CFS Patient Advocate re: WPI

    It appears to be back, good read & sad to hear about Dr Kerr
  24. Ash

    Should XMRV be called HIV-X?

    HNDV, I like it - XAND sounds like sand.
  25. Ash

    Dr. Kathleen Sibelius on NPR tomorrow.....................

    Haha, love the last slide of Dodd's, Crockoduck!
  26. Ash

    Are you uncomfortable to leave home? (possible xmrv symptom)

    I don't like those hard to answer social questions & getting out in the world usually results in a spike of my symptoms' intensity compared to laying down at home, but I don't have any "fear" or feel uncomfortable or weird going outside - I love getting out & about, I'm just quite limited in...
  27. Ash

    The Moment We Become Credible

    Wonder why they refer to "#3" rather than name it?
  28. Ash

    New Nature Paper on XMRV

    Here I was thinking I was a 31yo man.... :tear:
  29. Ash

    xrmv testing- australia

    oh, just their own taking forever to actually be built building - being in a thread about Australian's being tested I thought I'd missed some special new announcement about a planned WPI affiliated testing lab in Australia - stupid me, I'll be dead before that happens, carry on