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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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Search results

  1. R

    BBC Radio 4 Today's Programme allows Prof Sharpe to publically attack ME patients again

    He recently tweeted 'no forcing ever'. I vaguely recall a paper on therapist difficulties delivering treatment including such gems as 'it's as if they don't want to get better'. Can anyone remind me of which paper this was, and if in fact Sharpe was involved.
  2. R

    BBC Radio 4 Today's Programme allows Prof Sharpe to publically attack ME patients again

    In the UK, the equality act imposes a duty to not discriminate against the disabled (or race or other conditions). Public bodies (such as the BBC) have a duty to consider beforehand if their actions will discriminate against protected groups. Broadcasting a piece which encourages discrimination...
  3. R

    PACE Trial and PACE Trial Protocol

    I may have missed it - it's been a while since I read the thread in full. Do we have any of the peer review reports on the publication of the PACE trials, and surrounding correspondance with editors from FOIA?
  4. R

    How Much Longer? ME Advances: Projected Timeline for Tx or Cure

    It takes typically 15 years to go from 'Oh - that is the biochemical pathway of the disease' to getting the first candidate drugs through drug development, animal studies for toxicity and effectiveness in biochemical pathway informed trials, phase I, II and III clinical trials. And any drug...
  5. R

    NICE: "We are looking for lay members to join the ME/ CFS guideline committee."

    From here Expenses may be covered, and the details of the role are above.
  6. R

    Reexamination of Cognitive Behavioral Model of CFS: Investigating Cogency of Model’s Behavioral Path

    These are not phrases chosen by the researchers, but specific research questionaires that attempt to measure disability, there are several, and most are terrible. This is the SIP. They are commonly used scales of disability in research,so it's a little different problem than the researchers...
  7. R

    (US) Tell Congress "Don't defund ME/CFS!" regarding the CDC budget

    From 2019 proposed presidential budget - zeroed again. https://www.cdc.gov/budget/documents/fy2019/fy-2019-detail-table.pdf
  8. R

    Energy envelope maintenance among patients with myalgic encephalomyelitis and chronic fatigue syndro

    You can make a damn good stab at it. 'Are you feeling better now', 'has your fatigue improved', 'are you sleeping better' are terrible questions. 'Did you go out of the house yesterday', 'What is 222/4' (timed), 'did you go to work/school yesterday', as well as various cognitive tests that can...
  9. R

    Glucocorticoid receptor DNA methylation and childhood trauma in chronic fatigue syndrome patients.

    Well, you can at least say the CTQ-SF is probably better than the ACE - but that's very much damning with faint praise. http://childhoodtraumarecovery.com/tag/childhood-trauma-questionnaire-short-form/ At least they put in. It would have been nice if 'lack of effect of childhood trauma' was...
  10. R

    Contribution to science of Regius Sir Simon Wessely: a thirty year retrospective

    He's still publishing, and publishing unhelpfully - from the Christmas 2017 issue of the BMJ Both paragraphs are basically explicitly 'the brain can make you ill with physical symptoms and doctors should pay attention to this explanation'. He last published on CFS/ME in Apr 2016, and is...
  11. R

    Fatigue Journal Editorial Differing case definitions point to need for accurate diagnosis of MECFS

    Reference 6 is https://www.ncbi.nlm.nih.gov/pubmed/25175478 Integrated collaborative care for comorbid major depression in patients with cancer (SMaRT Oncology-2): a multicentre randomised controlled effectiveness trial. Err - no. I find this 'these forms' cropping up a lot in defence, when...
  12. R

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    This is not how it works. There is no accountability of any department or organisation in any meaningful way that would make them care at all about ME/CFS treatment in that manner. This is the prime problem I have about treating it as a 'conspiracy of government' - it's not. It's external...
  13. R

    New law:scientists could face criminal charges in the future for false data

    It's worth remembering that none of the PACE et al trials appear to be affected by false data. Most of the flaws in the trial can be found by close reading of the papers. The problem is in the flawed analysis, which is very very much harder to prove is intentionally false, and to legislate for...
  14. R

    Woman 'with ME' won world kickboxing champs

    Eighteen weeks would also be a record.
  15. R

    Woman 'with ME' won world kickboxing champs

    "add up" ... for the typical course of the disease. There have been no (?) rigorous studies of what the normal disease process is in people with CFS/ME in the long-term. Do 50% of people recover to pre-morbid functioning soon after being badly affected - certainly not. Do 1%? We have no idea...
  16. R

    Voices:Bristol Uni. both denies and supports Prof Crawley in her career enhancing “heroic vict

    I can certainly state mine was not. I was healthy for at least a year or so prior to onset, and had had no prescribed medications at that time.
  17. R

    FDA Warns Of Kratom Harms Including Death

    http://www.tandfonline.com/doi/full/10.1080/02791072.2017.1371363 may be of interest. Full paper at https://www.researchgate.net/publication/319995007_The_Scheduling_of_Kratom_and_Selective_Use_of_Data In short, it goes through the various evidence for harm (near zero) and news around the...
  18. R

    Rt Hon. Jeremy Corbin MP, leader of the Labour Party, to give opening speech at IiME 2018

    Perhaps one of the few diseases where the patients campaigning for less specialist funding on the NHS.
  19. R

    Ms Crawley 17th Nov in Exeter Mood Disorders: New research in ME research

    I liked Elon Musks statement of this. ( http://www.rollingstone.com/culture/features/elon-musk-inventors-plans-for-outer-space-cars-finding-love-w511747 )
  20. R

    Rethinking childhood adversity in chronic fatigue syndrome

    https://www.coyneoftherealm.com/blogs/mind-the-brain/stop-using-the-adverse-childhood-experiences-checklist-to-make-claims-about-trauma-causing-physical-and-mental-health-problems - relevant. This goes onto the major problems with the ACA used in the above paper. As one example, it equates as...
  21. R

    PACE Trial and PACE Trial Protocol

    In short. SMC=standard medical care (essentially nothing) APT= adaptive pacing therapy CBT= cognitive behavioural therapy GET = graded exercise therapy. CBT is encouraging the patient to ignore their symptoms and push on, giving specious reasons. GET is the same, but with a gloss that it's...
  22. R

    Ms Crawley 17th Nov in Exeter Mood Disorders: New research in ME research

    I am unsure if there will be snacks provided, but historically, they do seem quite keen on sickness rolls.
  23. R

    The link between the first polio vaccine in 1934 and the first observed ME outbreak

    Toxoplasmosis has problematic implications too, before even getting to rabies which still kills a few tens of thousands a year in India mainly.
  24. R

    PACE Trial and PACE Trial Protocol

    This is a good start, but the emphasis on deconditioning is unfortunate for those that won't stop to think about if exercise deconditioning actually works like that. Thanks.
  25. R

    The link between the first polio vaccine in 1934 and the first observed ME outbreak

    There is no especial reason to blame thimerosal for this. Various natural infections have been found to cause CFS, from flu to giardia. The modified polio virus in these early attempts at attenuation is one plausible trigger. Polio already has a well known effect in those who get it...
  26. R

    PACE Trial and PACE Trial Protocol

    I've done some searching, and not quite found a nice definition in their own words concisely that CBT/GET is a psychological intervention. Is there a nice concise source for this that doesn't involve closely parsing the treatment guide, for example. Not third parties, those directly involved in...
  27. R

    Psychology Today: 'CF patients, more research backing you'

    And implying that it is recovery to normal definitions of recovery, not a temporary moderate functioning with limits that later declines.
  28. R

    :New paper 10th Nov: Brain chemistry study shows CFS and GWI as unique disorders

    Meh. It's not technically accurate, but the author gets a hell of a pass for the first words being I'd almost give them a pass if they gave the reason as problems with the midichlorians after that.
  29. R

    Well here's a treat: Two videos of Ms Crawley, leading ME researcher, (!) delivering her TEDx talk

    Recollections as a small child are terrible, and influenced hugely by what parents or carers tell us. It can be really hard to dig out what actually happened, as the conflated memory of what we were told and what we thought we were told and happened at age 6 (or whenever) merge with reality to...