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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. J

    Farewell, until we meet again

    I hear you loud and clear, and can only echo your sentiments .. far too many folks here on PR to mention, who have my sincere thanks. John
  2. J

    New Times article on NICE (mostly good)

    aka 'policy-based evidence making' by 'self-appointed' topic experts only too happy to put career advancement before the needs of patients .. a case of "I see said the blind man to his deaf wife .."? Wishing everyone improved health and every happiness. John :)
  3. J

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Another article in the Guardian .. Hospital bosses forced to chant 'we can do this' over A&E targets Trust leaders say they were left feeling ‘bullied and humiliated’ by the incident at a meeting to improve performance I can only hope that these same Trust leaders recall their experience -...
  4. J

    Adolescents and mothers value referral to a specialist service for CFS or ME (SMILE trial)

    This 'nested' study was included as part of Surveillance proposal consultation document July 2017; for those interested - link to latest version can be found here on the NICE web site, see p38. So how many children and parents have passed through St Esther's 'hallowed' doors, and this is the...
  5. J

    Will you help raise the last £1,000 for Projects 1&2 of the UK Gut Microbiota Research?

    No worries Jo, and no offence taken. Wishing everyone improved health and every happiness. John :)
  6. J

    Will you help raise the last £1,000 for Projects 1&2 of the UK Gut Microbiota Research?

    Done :)
  7. J

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

    Will do via back-channel most likely .. :)
  8. J

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

    @lilpink I can recall my GP was required to undertake basic blood tests, and a questionnaire (or two?) as part of the referral process to my local ME/CFS clinic, but do not know if results and questionnaire(s) were also included as part of my referral. Unfortunately, the vast majority of my...
  9. J

    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    As yet, I can only find the following references in Developing NICE guidelines: the manual as applied to "Expert Witnesses", which seems to term applied to so called (external) Topic Experts that are not on the Topic-Specific Committee? Perhaps @charles shepherd can confirm my understanding ...
  10. J

    Wessely meets Stephen Hawking

    Stephen Hawkings response to Jeremy Hunt is can be found online Jeremy Hunt can attack me all he wants – but he is wrong to say the NHS is working Hunt ain't alone in the above regard .. :bang-head: Wishing everyone improved health and every happiness. John
  11. J

    NICE guideline for ME/CFS is unethical – Dr Diane O’Leary, Kennedy Institute of Ethics | 23 August 2

    Naff as is it is to refer to my own thread from a month or so back Barry - NICE Guidelines Disclaimer - I would suggest that NICE together with the DoH, NHS England, NGC/NCGC, leaders of the various Royal Colleges and others are jointly responsible for willfully misleading/misinforming GP's and...
  12. J

    ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

    Many thanks for the update Suzy .. as you say, not good news :bang-head:
  13. J

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

    If there is no full paper, then no worries .. no need to go to all that effort, when you know that only abstracts will be reviewed, for the purposes of a surveillance review. Heck, you can even get a 'qualitative study' nested within an unpublished [SMILE] trial used to justify no change to the...
  14. J

    NICE Guidelines Disclaimer

    Perhaps to therapists working within an NHS setting, not sure about private clinics? Happen that is why they developed a whole new CBT/GET approach just for us, and continue to re-label and tweek their psychosocial therapy of choice. Healthcare it ain't, a 'marketing health strategy' it is...
  15. J

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

    As I'd noted in post #130 above, the scope of evidence is limited from the outset, and places a heavy bias towards UK-based psychosocial research. Also in the same post, this will likely refer to employees of the National Clinical Guideline Centre (NCGC). In addition you can find an outline of...
  16. J

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

    From the current 'Code of Practice for declaring and managing conflicts of interest' .. and Now who could I thinking of on the CDG with 'hard-coded' conflicts of interest? :rolleyes:
  17. J

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

    So true .. and here in the UK, it would appear that the 'triage' of which you speak, is further compounded by the limited scope of evidence searches for any given condition - see Developing NICE guidelines: the manual, Process and methods [PMG20], Appendix F and Appendix G. Through doing some...
  18. J

    NICE Guidelines Disclaimer

    Just by way of a quick intro .. As most on PR will have noted, NICE have undertaken a surveillance review of the guidelines as applied to our disease. Following on from the IiME consultation response to the review, I noted the following: "Going forward then any harm coming to patients by...
  19. J

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

    My thoughts exactly .. :rolleyes:
  20. J

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

    In the existing guidelines (p3) "For the avoidance of doubt, the fact that an individual is living with a disease or condition, or has a family member who is in that position, is not regarded as a conflict of interest. (See Definitions for an explanation of ‘family member’.) In the new draft...
  21. J

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

    Having read through the new draft guidelines, my thoughts as follows: given page numbers refer to *.pdf document, not the original document. You are neither a member, or work with the advisory committee. My reading is that you need to be present in those meetings, i.e. in person or via...
  22. J

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

    The current NICE 'Policy on Conflicts of Interest' only apply to the following: Board members and employees of NICE. Employees of NICE national collaborating centres. Committee chairs and members (including co-opted members) and remunerated expert advisers. Appeal panel members. Agency workers...
  23. J

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

    https://www.nice.org.uk/news/article/managing-conflicts-of-interest-making-good-decisions?utm_medium=social&utm_source=twitter&utm_campaign=coijuly17 “To maintain people’s trust we need to manage interests and identify potential conflicts of interests effectively. We need to make sure that...
  24. J

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

    A question I've been asking myself since starting to read through the manual for developing Nice guidelines - Process and methods [PMG20] - and found the following extracts which may provide an answer to your question: Note the reference to 'critical appraisal' is applied to key papers only...
  25. J

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

    I'm damned sure that IAPT process of implementation regards proposed digitally-enabled therapies, will be used to provide yet more 'non' evidence which will support the maintenance of the status quo; that is the BPS model of illness and treatment, as is so inappropriately applied to #PWME. This...
  26. J

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

    https://www.nice.org.uk/about/what-we-do/our-programmes/nice-advice/iapt#IAPT-conditions My bolding .. I think the more likely scenario is that IAPT do not 'manage' NICE guidelines for ME, directly. They do, however, appear to be a department within NICE; their email contact info is given as...
  27. J

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

    And more from the document above .. (p9) I think it highly likely the above examples would apply to some members of CDG (Guideline Development Group) in my opinion. If time and energies allow, I think I recall mention of an Annual Register of Conflicts of Interest, which may well be worth...
  28. J

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

    @Keith Geraghty Firstly thank you for your sustained and continuing work on the behalf of all #PWME .. Thought this NICE 'Policy on Conflicts of Interest' would be of help with regard to refuting the absurd requests of Professors White, Chalder and Sharpe...
  29. J

    David Tuller needs our help

    Donated with sincere thanks to David Tuller for his continued advocacy for #pwme :)
  30. J

    PACE trial re-analysis paper (Wilshire et al) is now open access - thanks to MEA!

    Many thanks! In the expectation that the serious flaws with the PACE trial, as highlighted in this paper, will not filter down to the NHS 'coal face' for some time, I will make sure to drop off a copy with the Practice Manager at my local GP surgery, and my local MP. Likewise, I will keep a...