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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Flash of Hope

    James Coyne: Should authors declare a conflict of interest...

    I have thought this patients conflict of interest before. First there seems to be some merit to it as patient has special interest's in research. But then again if you think it further patient has special interest to get it right. And this is something those cronies don't seem to get. They seem...
  2. Flash of Hope

    David Tuller needs our help

    $60k already achieved, but I needed to chip in, Daivid Tuller has had such an impact. :thumbsup: Thankyou!
  3. Flash of Hope

    Looking for ellusive publication papers and need help please

    I tried to put it here "If I recall they refer both, but better check, my memory..." If you need definitive answer and this difference is important, better check from the article or search from the PR. If you do this, put it to this thread too please. I got around this by being bit vague of my...
  4. Flash of Hope

    Looking for ellusive publication papers and need help please

    Chronisch Vermoeidheidssyndroom: diagnose, behandeling en zorgorganisatie, KCE reports 88A Federaal Kenniscentrum voor de Gezondheidszorg Centre fédéral d’expertise des soins de santé 2008 Study it self is in English. Section 6.2.3.2 at the bottom. Page number (not pdf number) 80. If I recall...
  5. Flash of Hope

    Looking for ellusive publication papers and need help please

    I will explain the results in text. Like: "After CBT people will report they are better off, but there is no objective indication of increased activity" :D. There so much citations already >50. This one is currently in order 14th. If by chance they just home on this one, they might start...
  6. Flash of Hope

    Looking for ellusive publication papers and need help please

    Thanks a lot! From your posts and links I have so far grabbed these: Zorg voor ME/CVS-patiënten by Nivel How does cognitive behaviour therapy reduce fatigue in patients with CFS? The role of physical activity Managing my M.E. by ME Association That Twisk - Maes one I already had. And of...
  7. Flash of Hope

    Looking for ellusive publication papers and need help please

    Thank you for your replies Effi and Andrew. I will look at those when I feel up to. I'm currently half blind to text as something is messing my brain. Not so fun. If you have research papers at hand, doesn't hurt to put them here. I will look at them too. From the study I linked I got this...
  8. Flash of Hope

    Looking for ellusive publication papers and need help please

    I'm currently writing to my government officials and I'm looking two more papers I simply can't locate. These papers are from around 2004-2012 and describes how CBT and GET affects patients in practical clinical setting, not in research. There is some economical thinking done too. I have found...
  9. Flash of Hope

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    In current system "payment for the crimes" would be quite arbitrary as there is high chance (like >95%) you get away with it. The time it takes to investigate and prosecute the case in several layers in legal system would make payment long overdue. And the is no guarantees of verdict. If big...
  10. Flash of Hope

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    8< snip 8< by FoH 8< snip 8< You would be surprised how sensitive many psychiatrists are of their self (at least those I have met). And the harsh comments they drop about their patients metal status and belittle their thoughts. My experience is they can't take constructive critique of...
  11. Flash of Hope

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    I hear you. And I agree with you. But I will reserve my judgment until we have PACE trial data or biomarker for ME/CFS. I'm advocate for innocent until proven otherwise so at the moment I don't want to declare them guilty. Of course I don't like their actions, it looks suspicious and more and...
  12. Flash of Hope

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    I agree with you, but I will eat my hat if this happens. Its not impossible, but so unlikely. Look at this case Mr Matthees & IC vs. QMUL. This is clear, cut and dried case of information request based on FOIA and to release or not to release. It took 2.5 years to get to this point and we are...
  13. Flash of Hope

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    I would like to hear PACE authors explanation how holding data from bona fide researchers is best for science? We have Ronald W. Davis, Jonathan Edwards, James C. Coyne, David Tuller + 40 more signatories in open letter. This just proves that it is not about science or benefit to everyone.
  14. Flash of Hope

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    My thoughts exactly. There should be research done to these "researchers" to investigate if there is link between childhood trauma and gross exaggerating of threat feelings. Maybe they are suffering from negative feedback phobia coming from daddy issues mixed with bowel control problems in...
  15. Flash of Hope

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    I don't know how it is in UK and QMUL, but here if professors misrepresent facts, cause 200k£ loses and legal embarrassment to University, they better have very good friends in administration or axe will fall and they can start filling job applications. Tho if this would happen I'm sure...
  16. Flash of Hope

    Who first called it a 'phobia of movement'?

    Psychiatrists should understand you. But they don't even get this. They are frightened if you say this to them. I don't have specific experience have been too level headed trough my live not to say it, even when angry. But I can deduce this from much milder disagreements with them. Psychiatrists...
  17. Flash of Hope

    Comment by 'Flash of Hope' in 'The Privilege of Evidence of a 'Real' Illness'

    I have whole range of diagnosed mental illnesses from public health. I have spend more than 50 hours next to psychiatrist hoping them do something concrete like write letter to doc to do something on somatic side. Psychiatrist agreed that my condition was not "normal" and response to treatments...
  18. Flash of Hope

    "Chronic Fatigue Syndrome" by Chalder in The Wiley Handbook of Cognitive Behavioral Therapy

    This is something I have told few doc's when they tell me about power's of mind. I just ask them submit blood sample and second at later time where they have raised their tyrosine level over normal range by their mind power. From the looks of their face I construct mind power only applies to...
  19. Flash of Hope

    Widespread pain and altered renal function in ME/CFS patients.

    +1 I'm constantly around 6.5-7.5l/day. I take extra salt for 7g/day. Normally when I tell doctors I take extra salt they look me in weird way and when the discussion goes to urine output they quickly tell me its the extra salt which causes this. And when I tell them before I started taking salt...
  20. Flash of Hope

    Sen et al: Systemic exercise intolerance disease: What’s in a name?

    Naming isn't so important as long as its some what descriptive. PEM is unique feature of most of our condition so it's close. But labels are only important to insurance benefits or quickly passing generic information. I know we ME/CFS/SEID patients are touchy about the naming, mostly duo to past...