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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. K

    MKSAP Query on ME/CFS

    Thanks for your response, @Janet Dafoe (Rose49)! Just seeing it now. I will try to contact Dr Bateman as you suggest.
  2. K

    MKSAP Query on ME/CFS

    @Janet Dafoe (Rose49) I saw you commented on this piece. Do you think Ron and/or his colleagues who worked on the IOM report would be willing to submit a case study that could replace this one?
  3. K

    MKSAP Query on ME/CFS

    Thanks for highlighting this, @duncan. I have concerns too. I have sent emails to both KevinMD.com and the American College of Physicians (publisher of MKSAP 17 from which the case study was reportedly excerpted). I focused on diagnosis only, picking my battles, as the saying goes. Could...
  4. K

    Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri

    The PACE paper specifies that "GET was delivered by physiotherapists and one exercise physiologist" (White et al 2011 p.825). Nothing about cardigan colour. The webappendix (http://researchonline.lshtm.ac.uk/400/) has a table on p.1 outlining who gave what. APT was delivered by OTs, CBT by...
  5. K

    Comorbidities in the diseasome are more apparent than real: What Bayesian filtering etc

    I would have been interested to see how autoimmune conditions would have patterned here. @Jonathan Edwards, I’d be interested in your interpretation of the quotes from the paper in my post above (some repeated below)? I think this means that there is no real relationship between CFS and...
  6. K

    Comorbidities in the diseasome are more apparent than real: What Bayesian filtering etc

    Here’s a bit more detail on what they say about CFS specifically (I have divided the text into smaller chunks and added bolding): “Another interesting cluster of comorbid disorders are irritable bowel syndrome (IBS), fibromyalgia (FM), chronic fatigue syndrome (CFS) and migraine; all of them...
  7. K

    McDermott et al: Feasibility study for a community based intervention for adults with severe CFS/ME

    Yes, only 11% of the FINE trial participants were "non-ambulatory".
  8. K

    IAPT - Improving Access to Psychological Therapies - manages CG53!!

    Speaking of homeopathy, there was a bit of discussion about this in a thread started by @AndyPR which is relevant to your point @Jonathan Edwards...
  9. K

    The Guardian: 'A misuse of scarce funds': NHS to end prescription of homeopathic remedies

    I think context is important: homeopathy still ranks very low on the list of therapies that patients report as helping them/improving their symptoms in surveys, 19th of 25 in MEA 2010 and 18th of 20 in Action for ME 2014. Much, much higher proportions of patients report things like pacing as...
  10. K

    The Guardian: 'A misuse of scarce funds': NHS to end prescription of homeopathic remedies

    Patient surveys suggest that patients find homeopathy more helpful than GET, and a lot less harmful: ME Association 2010 (UK): 30% of 1100 patients reported improved symptoms after homeopathy and 10% that homeopathy made them worse, compared to 22% of 906 reporting improved symptoms after...
  11. K

    Patient surveys and PACE: what patient surveys tell us about efficacy and safety of GET, CBT and pac

    Hi @Dolphin, hope you don't mind me butting in! Previous tweets about the paper are at this link : https://sage.altmetric.com/details/20072990/twitter so you'll find Jaime's and others' there. Different people picked out different aspects of the paper to highlight. Many thanks @Tom Kindlon...
  12. K

    What is known about severe and very severe chronic fatigue syndrome? A scoping review

    Good point. I agree with others who have pointed out the problem with Strassheim et al's comments on "restricted exposure to the environment" in someone with severe ME and POTS "in extreme cases leading to hypersensitivity to light and sound" (p.12) - the idea that light and sound sensitivity...
  13. K

    What is known about severe and very severe chronic fatigue syndrome? A scoping review

    I find it concerning that Friedberg et al’s 2016 paper was included in this review of studies on severe and very severe ME/CFS by Strassheim et al. Friedberg’s sample did not have severe ME/CFS. Friedberg et al’s paper sounds like it’s about severe ME, given that its title is “Efficacy of two...
  14. K

    Prof Esther Crawley's paper defines the symptoms of severe ME as PRS

    Rowe et al’s 2017 paediatric primer does a nice job of distinguishing ME/CFS from PRS and is available here http://journal.frontiersin.org/article/10.3389/fped.2017.00121/full. It says: “Psychiatric Illnesses That May be Misdiagnosed in Young Patients with ME/CFS Lack of familiarity with the...
  15. K

    Correspondence with the Mayo Clinic re ME/CFS! (amazing response) - UPDATE

    Well done, @Mary. This is a nice alternative to the Crawley paper which could be worth flagging to any Mayo paediatricians you correspond with (if you haven't already!) - a paediatric primer published 19th June 2017: http://journal.frontiersin.org/article/10.3389/fped.2017.00121/full Its...
  16. K

    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    For an alternative view, I hope that clinicians and parents of children and adolescents with ME/CFS (and indeed, the adolescents themselves) will come across this open access paediatric primer, which includes Peter Rowe, Rosamund Vallings and Nigel Speight as authors. It is is well-referenced...
  17. K

    GETSET (white) in Lancet 22/06/17

    Sorry for misleading you @Valentijn! My eyes slid down a row when citing the IQR for the control group. I know @BruceInOz has alerted you to this already but just to be sure. I have now edited my original post.
  18. K

    GETSET (white) in Lancet 22/06/17

    You're absolutely right, @BruceInOz, going back to edit my original post now. Sorry for any confusion!
  19. K

    UK NICE guideline consultation open 10 July 2017 until Friday, 21 July 2017.

    Feels a bit naff to quote myself, but... I hope that my commentary and particularly the figure and table from my commentary on patient surveys might be useful to people putting together submissions to NICE. The figure and table give a brief, visual overview of UK patient survey data...
  20. K

    GETSET (white) in Lancet 22/06/17

    Duration of illness at baseline in the GETSET trial is reported as 46 months for the GES group (that's a median rather than a mean), with an interquartile range of 23-114 months (aka most fell within that range) and 42 months for the control group, with an interquartile range of 25-99 months...
  21. K

    Trial by Error, Continued: More on Graded Exercise from Peter White and The Lancet

    Exactly! It calls into question the reliability of the plethora of baseline questionnaires/scales used as outcome measures in the GETSET trial, all of which rely on ME/CFS patients’ perceptions: SF-36, Work and social adjustment scale, HADS depression scale, HADS anxiety scale, Patient Health...
  22. K

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

    One of my posts may have caused an issue. Just to clarify – “skewed perceptions” was my wording, not Prof White’s, and that exact phrase does not appear in the GETSET therapist manual, although in my view is an accurate assessment of what the section on rating of perceived exertion is saying...
  23. K

    Trial by Error, Continued: More on Graded Exercise from Peter White and The Lancet

    Sorry Trish, I meant to say that yes, I agree, that is a theoretical possibility. I just don't think we have any evidence to suggest it has happened. What I do think is possible is that people who have in the past promoted the deconditioning model might, over time, distance themselves from any...
  24. K

    Trial by Error, Continued: More on Graded Exercise from Peter White and The Lancet

    Since Tuller doesn’t mention the manuals, but just discusses the paper, then taking his piece at face value, he seems to just be hopeful that by not stating their hypothesis explicitly in the GETSET paper as they did in the PACE paper, they might have changed their minds. Alternatively, this...
  25. K

    Trial by Error, Continued: More on Graded Exercise from Peter White and The Lancet

    The example of what to do during a setback is also interesting (p.21 of patient booklet http://www.wolfson.qmul.ac.uk/images/pdfs/getset/GET%20guide%20booklet%20version%201%2022062010.pdf). Fictional "Joe" is supposed to be walking for 17 minutes 5 days a week, but he has a fictional ME/CFS...
  26. K

    Trial by Error, Continued: More on Graded Exercise from Peter White and The Lancet

    Thank you! I see it now. It's a while ago, eh? Yes I saw that the therapist manual link wasn't working so I replied to my own comment giving links again. Hopefully this will work: http://www.wolfson.qmul.ac.uk/images/pdfs/getset/GETSET%20therapists%20manual%20with%20appendices.pdf If not...
  27. K

    Trial by Error, Continued: More on Graded Exercise from Peter White and The Lancet

    I couldn't see a publication date - can you let me know where it is? And did you see one on the patient booklet too?
  28. K

    Trial by Error, Continued: More on Graded Exercise from Peter White and The Lancet

    I posted this comment on David Tuller's blog, showing how the manuals clarify that the rationale for GES in GETSET is essentially the same as that for GET in PACE: Thank you Dr Tuller and Prof Levin. I don't think there is a shift in rationale or hypothesis between PACE and GETSET, there is...
  29. K

    GETSET (white) in Lancet 22/06/17

    You may remember #GETSET Julie, a hypothetical patient who featured in the GETSET booklet for patients, discussed in this thread. That booklet was written by 9 GET therapists working in the NHS, edited by GETSET lead author Clark, and help of White, Cunningham and Bavinton was acknowledged (see...
  30. K

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

    Thanks for posting this, Keith, loved it. My favourite bit: “Once these classification schemes become enshrined in recommendations and guidelines, they ossify and reproduce our assumptions and prejudices. Furthermore, it makes those assumptions and prejudices scientific.” (15:00)