• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. P

    The third (second open) IOM meeting May 5th

    In regards to why NLP might get the NIH into difficulties, this 2012 systematic review of NLP effects on health outcomes: "Conclusion There is little evidence that NLP interventions improve health-related outcomes. This conclusion reflects the limited quantity and quality of NLP research, rather...
  2. P

    The third (second open) IOM meeting May 5th

    That is an interesting point jspotila, though I also understood that there were going to be some private sessions; though maybe this just means sessions where the audience may not comment or ask questions. If it turns out that they do have some private sessions, then perhaps a Freedom of...
  3. P

    The third (second open) IOM meeting May 5th

    Thanks for the good news. I am still curious to know how Arroll was even considered to appear in the first place. If anyone gets any info I'd like to see it.
  4. P

    The third (second open) IOM meeting May 5th

    Although the video I mentioned earlier has been deleted, there is another which is still available. Though tediously long I found it amusing to see Dr Arroll and Howard talking for several minutes about her PhD without ever mentioning what the study was about other than getting the idea that it...
  5. P

    Cochrane Review protocol: Exercise therapy for chronic fatigue syndrome (individual patient data)

    My apologies if this has already been covered. The review fits perfectly into plans laid some 9 years ago. Three (at least) of the authors were present at a meeting described by Williams and Marshall in Proof Positive: http://www.meactionuk.org.uk/proof_positive.htm I recommend reading the...
  6. P

    The third (second open) IOM meeting May 5th

    I would add that regarding Dr Arroll's recovery (or not) I have a recording of the relevant part of the video I mentioned earlier and this segment which was published on the OHC website. The Optimum Health Clinic biography on Dr Megan Arroll stated: “Meg was diagnosed with ME at the age of 14...
  7. P

    The third (second open) IOM meeting May 5th

    I would speculate that Dr Arroll was invited to address the IOC on the grounds that she is an expert on M.E. If she is an expert then perhaps she has sufficient knowledge to decide whether or not she herself actually has M.E. In a video that was on the OHC website (which now appears to have...
  8. P

    The third (second open) IOM meeting May 5th

    I think it rather telling that the OHC's details of staff includes post-nominal titles including e.g.: ***** **** Dip.Clin.Hyp.NLP.Coach.EFT (http://freedomfromme.co.uk/psychology-team/) This 'qualification' is bestowed by Phil Parker for learning to teach the lightning process. The taught...
  9. P

    The third (second open) IOM meeting May 5th

    The Optimum Health Clinic have had a number of complaints regarding claims made on their website. I copy one that I made to the Advertising Standards Authority (ASA). This led to the OHC promising to remove the offending information. I cannot interpret their false claims as being an innocent...
  10. P

    (PACE Trial) Response to FoI request: Numbers within normal ranges for CFQ and SF36 PF at baseline

    This is great, Tom. I would be curious to know if this data was generated in response to the FOI, or, if it was already available, when was it produced? You can probably guess where my dirty little mind is going! Did they generate this as part of the process of deciding where to put 'normal...
  11. P

    Some letter thoughts

    I do find that the phrase gives me a jolt. Why this sudden need for researchers to define 'recovery'? If interventions are only able to improve or stabilize patients then setting criteria for 'improvement' makes sense because every illness is different. Many people with Class 2 Rheumatoid...
  12. P

    Some letter thoughts

    I hope this is not going off on a tangent too much, if it is, please ignore. "The authors are right to explore the concept of measuring recovery for ME/CFS." Why? What is it about ME/CFS or the PACE Trial that makes this (re)defining of 'recovery' appropriate? The PACE Protocol defined...
  13. P

    Letter draft - lack of objective measurements, focused- on claim that jobs and actometer measurements are inappropriate

    Just a suggestion: "Actometers could have shown whether any potential gains on questionnaires or brief exertional tests were real and sustainable." maybe: Actometers could have shown whether any apparent improvement measured in questionnaires or brief exertional tests correlated with...
  14. P

    1st draft of my letter

    Excellent. If it could be done, I'd quite like to see para 3 at the beginning. It is such a good point that it grabs the attention and really summarises the issue.
  15. P

    Some letter thoughts

    Dear Valentijn, I hope you find this interesting: Jenkinson, Coulter and Wright, analysed the, Short form 36 health survey questionnaire: normative data for adults of working age; in the British Medical Journal. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1677870/) Using White et al’s...
  16. P

    Margaret Williams Critical Riposte to Wessely

    Thanks All. And here is the update! More of wessely's fiddling with history and using misdirection. The disturbing thing is that he actually appears to believe he is smart enough to bamboozle Lady M. http://www.meactionuk.org.uk/Simon-Wessely-to-Lady-Mar.htm...
  17. P

    Lady Mar writes to Prof Wessely

    Letter from the Countess of Mar to Professor Simon Wessely [House of Lords Logo] 4 December 2012 Dear Professor Wessely I note from recent correspondence arising from the report in the Independent on Sunday on 25 November 2012, that you believe me as guilty of harassing you. Perhaps it...
  18. P

    PACE Trial Recovery Rates

    Hi Alex. The date on the analysis came from me, the PACE Trial was published in the Lancet in Feb 2011. Recruitment started in May 2006 and all data was collected in 2010. One of the participant newsletters (2008) mentions participants will be recontacted after 2.5 years for an update. No...
  19. P

    ME: bitterest row yet in a long saga

    Wessely is also the Science Media Centre 'expert' on M.E. and CFS. It was their press-conference held for the publication of the PACE Trial in the Lancet that led to inaccurate claims in UK national newspapers.
  20. P

    PACE Trial Recovery Rates

    Thanks all. I agree Sean, no recovery happening but I suspect a common phenomenon is occurring. Clients (especially getting 'free' therapy as in research) are not only beholden, they can actually fear appearing critical. Personally, I reckon I must have told doctors, friends and relatives at...
  21. P

    PACE Trial Recovery Rates

    Dear All, The PACE Trial Recovery Rates An M.E. friendly document with graphs and charts analysing the recovery rates for participants in the PACE Trial. http://www.scribd.com/doc/115343781 (doc or pdf) https://docs.google.com/open?id=0B4Hu7D6DycascHlVUUpNZ3o0NkU The google doc displays with...
  22. P

    A preliminary prospective study of nutritional, psychological and combined therapies for me/cfs

    In a video on OHC’s website Dr Arrol states: http://www.freedomfromme.co.uk/research-overview/ (Accessed April 20th 2012) “when I was about 14 I had a bout of glandular fever and this developed into M.E. I was very severely affected for 2 years. I was housebound. Very sensitive to light and...
  23. P

    Margaret Williams Critical Riposte to Wessely

    Margaret Williams replies to Wessely's self-aggrandizing advice to Scotland's medical authorities. http://www.meactionuk.org.uk/Ruffled-feathers.htm?forumid=331851
  24. P

    PACE Trial and PACE Trial Protocol

    I understand that there are good people still working to get the Lancet to address problems with the PACE trial. Unfortunately, Richard Horton, the editor, has already taken a position in defence of the research and researchers so it is going to be difficult to get it changed. An independent...
  25. P

    Interactions with Medical Professionals

    I think this page speaks volumes about ME/CFS research: http://report.nih.gov/categorical_spending.aspx Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) some examples (annual dollar amounts in millions): 362 Prostate Cancer 277 Asthma 151 Multiple Sclerosis...
  26. P

    Research into Forum Use by People with ME/CFS

    I agree that the wessely-school will bend what they can, but my view is that what they cannot shape to fit with their theories they simply ignore. Psychosocial research into pwME/CFS has never, so far as I can see, contributed to the wellbeing of patients except when research results can inform...
  27. P

    Research into Forum Use by People with ME/CFS

    Assuming that Ellen has done her homework, she will be aware that there is a school of thought (the wessely-school) that people with M.E. or CFS are simply phobic (hysterical) and deconditioned. These theories have led to the 'treatments' Graded Exercise Therapy (GET) and Cognitive Behavioural...
  28. P

    PACE Trial media coverage UK

    Do you like spin? Now available as PDF or Doc: examples of media coverage of the PACE Trial: http://www.scribd.com/doc/112487732/Media-Coverage-of-the-PACE-Trial Some PACE Trial details in easy to read bullet points as doc or pdf...
  29. P

    Interactions with Medical Professionals

    I apologise if I seem to have been heavy-handed over this, but I have seen too many research invitations about psychological and psychosocial factors of M.E. and CFS that were disingenuous. Why do researchers appear to believe that they must approach us surreptitiously and wheedle for...
  30. P

    Interactions with Medical Professionals

    My reply to 'their' reply: Dear Faustina Layne, Firstly, am I to understand that your establiment's Ethics Committee consider unethical research practice acceptable when the research is adjudged to be 'minimal risk'? Secondly, how is 'minimal risk' calculated? The participant group is...