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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. Stukindawski

    Simon Wessely to undertake Mental Health Injustice announced at Tory Conference

    The bigger you are, the harder the newspapers dig through your rubbish. :thumbsup:
  2. Stukindawski

    More from Science Medica Centre on SMILE

    Anyone with a keyboard can comment and make posts about ME/CFS, patient or otherwise. Everything is controversial on the internet and everything is public. I think a lot of people deeply embedded in Scientific and Journalistic careers have experienced a culture shock because the level of access...
  3. Stukindawski

    Request for NOD-DERS: Could your data be part of the NOD (National Outcomes Database of UK ME/CFS

    Pretty sure I was pre 2011 by some margin, but if I can help, I know at least filled out a HADS (aka, the "take your physical symptoms and turns them into a mental health problem" form)
  4. Stukindawski

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Since someone asked, it's totally cool to share those times codes, I don't need credit or anything, I have the joy of making information for digestable for fellow PWME ;). As far as YouTube goes, Youtube automatically processes the time codes without the need of creating links (provided they're...
  5. Stukindawski

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Clickable links to each part of the stream:- (Click the timestamps to go directly to that point in the video) Introduction & Welcome: Linda Tannenbaum and Ashley Haugen (00:10) Opening Remarks: Ron Davis: (00:14) Morning speakers: Robert Naviaux: The metabolism of the cell danger response...
  6. Stukindawski

    Scientists trade insults over ME (JHP special issue)

    If someone was able to put together very clear evidence of those lies and pass it on to some of the journalists who ran the initial story, might be worth a go. It's obvious they like fairly blatant content.
  7. Stukindawski

    GETSET (white) in Lancet 22/06/17

    If I spend 10 minutes in the garden cutting the weeds that are overgrowing into my poor neighbour's property, the muscles in my arms go weak and I experience temporary paralysis. I cannot pour a drink or raise my arms properly for an extended period and I lose the ability to string proper...
  8. Stukindawski

    ME is not mould intolerance; mould intolerance is not ME

    (Note: I'm basically using this thread to learn myself, so any arguments I form aren't sacred to me) It has been argued is that ME is a postviral condition since the term was used for a specific, postviral condition, for decades prior to the invention of CFS. Various CFS criteria have been...
  9. Stukindawski

    ME is not mould intolerance; mould intolerance is not ME

    Trying to see this from another point of view. Ramsay's ME (Thus: ME) is inherently Postviral as it describes the symptoms of a specific disease presentation to which the use of the term ME was attached. While it's impossible for a disease name to fully encompass its signs, symptoms and...
  10. Stukindawski

    ME is not mould intolerance; mould intolerance is not ME

    (Note: I'm not wedded to any of this and very open minded/excited to read good rebuttals) To put it another way, Myalgic Encephalomyelitis, describes Muscle Pain & Brain/Spinal Cord Inflammation. As far as I know, Muscle Pain & Brain/Spinal Cord Inflammation hasn't been limited to only one...
  11. Stukindawski

    ME is not mould intolerance; mould intolerance is not ME

    I've read various interpretations of the meaning of the term 'Myalgic Encephalomyelitis' over the years. The latter part of the term refers to an inflammation. Inflammation can be brought about by agitation, when the source of the agitation is removed, the inflammation may have the chance to...
  12. Stukindawski

    Cort Johnson interviews Tom Kindlon (Introduction)

    I boldly made that assumption myself. Hopefully this wont engender any hat eating on my part :D I'll make sure and edit that in later so it's clear.
  13. Stukindawski

    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    @IVI Quite a lot of important points here. Not popular points it would seem. When people or doctors ask me about my health lately, I tend to make more reference to my Orthostatic Hypotension since it's a meaningful diagnosis. The cause isn't known either but it's observable, reproducible and...
  14. Stukindawski

    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    If it's felt that studies like PACE are used to contribute to a posited aetiology and are touted as evidence of it, I think the comparisons then hold plenty of merit. Honestly I feel like PACE is a waste of psychiatry in many respects. If psychiatric care was first tailored to helping patients...
  15. Stukindawski

    Draft letter from Stukindawski

    Hmm coulda sworn I posted on here the other day, maybe I missed the button. I'm fine with this being posted here btw. I'm going to be focusing on the next couple days on getting your interview published, so I'll be back to refine this letter in a couple days. If you have suggestions where...
  16. Stukindawski

    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    Prof Winston's parry to a perfectly literal question on Twitter is quite telling:- It's like he's been briefed on how to derail legitimate enquiry.
  17. Stukindawski

    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    ME advocacy is in a crisis of public legitimacy, for this very reason. While the importance of continued work on supporting research remains ever important, I have to admit that the content of this debate leads me to believe that, ME/CFS in the UK has been all but utterly defeated on a media...
  18. Stukindawski

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    Hmm, I've never actually written a letter to a journal before. I've drafted a letter, if you think it's good enough, let me know how I would go about sending it for publication:- As a patient, I have yet to see substantial data that would make me feel confident in committing to such a...
  19. Stukindawski

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    I think there is always going to be something of a methodological black hole in CBT/GET research unless the effect of the treatment is substantial. But I'd really like to see something massive. OI symptom tracking POTS tracking VO2 max repeat exercise testing Inflammatory response post...
  20. Stukindawski

    FDA declines to approve Hemispherx's Ampligen new drug application

    According to Twitter, Bob's hunger strike is now directed at the NIH, I assume to fund trials. I think in lieu of approval, a government funded Ampligen trial is definitely a sensible goal. Of course like anyone, I'm worried about Bob's condition at this stage. If I don't eat I can't stand up...
  21. Stukindawski

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    It could be argued that pursuing CBT/GET research in an illness without a known cause is like licking a muddy puddle when there's a clean glass of water on the table. I think criticism of the recovery data is definitely better aimed at putting pressure on the MRC to fund investigative types of...
  22. Stukindawski

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    It could be argued that a stricter diagnosis might rub out that 25% just as effectively, but, in reality does it work out that way? I wonder if the CFS diagnosis is a mainline to cost-saving and a 'tacit-agreement' has somewhat naturally occurred in the system.
  23. Stukindawski

    UK: House of Lords to debate PACE study, Weds 6 Feb 2013

    The recent letter writing exercise bodes well no doubt as preparation for this debate. I would suggest to anyone who has a constructive improvement on what has been written in the course of that correspondence, send a message to the Countess, if that's possible.
  24. Stukindawski

    Continuing Correspondence, Countess of Mar and Prof White and Prof Sir S Wessely

    I think the one thing maybe I struggle with, comes back to the diagnosis or there-lackof. CFS in several classifications stands for little more than prolonged, medically unexplained fatigue. PD White himself has signed a statement in opposition to the Canadian Concensus Criteria that critiqued...
  25. Stukindawski

    Continuing Correspondence, Countess of Mar and Prof White and Prof Sir S Wessely

    That final response was a complete stonewall really wasn't it. Team BPS as ever, choosing the questions they answer and ignoring the rest. So there you have it, an obstinate commitment to non-engagement of inconvenient questions or suggestions. Clearly they're not going to expose themselves...
  26. Stukindawski

    Continuing Correspondence, Countess of Mar and Prof White and Prof Sir S Wessely

    I think the semantics of what is said by somebody like White isn't always as interesting as what isn't said. The liberties taken with inferences in many psych papers along with the abhorrent lack of any sincere attack on the hypothesis they make are more startling than anything that is claimed...
  27. Stukindawski

    Continuing Correspondence, Countess of Mar and Prof White and Prof Sir S Wessely

    Now this, is the letter I've been waiting for. Thank you Lady Mar.
  28. Stukindawski

    Professor Martin Pall's Response to Wessely et al, J Roy Soc Med paper

    EMS is one of those things which always draws out the sceptic bandwagon. But at best a sceptic can only supply you with 'no evidence of harm'. If there are genuine cases, I'm sure a lot of possible research will be precluded by bandwagoning. EMS would be an inconvenient condition based on the...
  29. Stukindawski

    Professor Martin Pall's Response to Wessely et al, J Roy Soc Med paper

    Can this letter be edited and re-submitted? Would be a shame for any valuable critique to be lost from the record, because somebody fell for the Wesselyan pantomime villain trap.
  30. Stukindawski

    Lady Mar writes to Prof Wessely

    That is a slightly selective interpretation of what was written I think. I can't see a battle of interpretations on either side becoming more than a sequence somewhat fruitless self-satisfying quests. Since some things have been removed that I can't personally review, the picture is also...