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  1. Suffolkres

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    I did try to make contact with her, as she would be excellent, but she was abroad and colleagues (or ex colleagues) said on her return they would pass on my message. David Vickers Cambridge paediatrician (who was involved with the 2007 Guideline) may be in contact with her?
  2. Suffolkres

    FITNET-NHS Esther Crawley - 5th protocol out now

    There is another issue here. If the children and Young people being contacted "For 16 or 17 year olds "invitations" go straight to the kids", -if they have a diagnosis and are, or have been out of school, other agencies will be involved and they may come under the heading of 'vulnerable" or...
  3. Suffolkres

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    I suggested Janey Readman, Team Leader, Children's Community Nursing for CFS/ME. I think she retired recently though. CFS/ME and Young People - Milton Keynes University Hospital https://www.mkhospital.nhs.uk › ... › For patients › Health Psychology Our keynote speaker was Dr David Vickers...
  4. Suffolkres

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    FYI the now 2 members of the NICE Guideline Committee and review for ME who were regarded by Waveney CCG as having a "conflict of interest” in the delivery of in their feasibility report for Suffolk and Norfolk ME and CFS Services, and who had offered to steer the ME Service ship into calm and...
  5. Suffolkres

    Trial By Error: And Another Prebuttal…

    .......lumping broad CFS umbrella....... This works if you have the right call or voice....
  6. Suffolkres

    'Benchmarking' exercise by our local NHS

    https://bmjopen.bmj.com/content/4/6/e005083 also useful background.
  7. Suffolkres

    'Benchmarking' exercise by our local NHS

    Useful background from Northern Ireland and Hope4ME and Fibro
  8. Suffolkres

    'Benchmarking' exercise by our local NHS

    ....and this fact needs conveying formally to the NICE review?
  9. Suffolkres

    'Benchmarking' exercise by our local NHS

    Exactly Peter! My thoughts and my concerns at the local provider manager being let loose on this. He will 'cherry pick" in his own image, and quote 'NOD' at Bristol , ... which was closed down in 2015... BACME historic perhaps. This exercise is intended to serve his agenda and not serve ours, so...
  10. Suffolkres

    'Benchmarking' exercise by our local NHS

    https://www.whatdotheyknow.com/request/cfs_clinical_exercise_assessment_8 CFS - clinical exercise assessments and objective outcomes at NHS clinics Dear NHS Benchmarking Network, I am trying to obtain information on the effectiveness of current practices at NHS funded CFS clinics and appear to...
  11. Suffolkres

    'Benchmarking' exercise by our local NHS

    Our local NHS provider and lead commissioner have stated they will be going through a 'Benchmarking' exercise... So I thought I would do a little digging taking into account the current parlous state of NHS Services for ME and CFS... any thoughts would be welcome ...
  12. Suffolkres

    Trial By Error: Bristol Investigating Crawley Papers

    The answer to this, in my experience is Yes! Conversely, many of the students in my specialist Pupil Referral Unit who were wrongly labeled as"phobic" or "refusers" or "anorexic" actually had ME.
  13. Suffolkres

    UK: Social prescribing on the NHS (and possible implications for ME/CFS services)

    The patient example on the BBC did not help or inspire me with confidence! More 'social prescribers' to ease pressure on GPs Arif was diagnosed with pre-diabetes and joined an exercise club to lose weight
  14. Suffolkres

    Royal College of GP training facility (2018)

    It's the METRIC on line CPD course. Been through it and have screen shot most of it. To be scrupulously fair, it was not as bad as I thought it might be....... I think we have to be measured and careful in our comments and any specific criticisms about it....... The content is different to the...
  15. Suffolkres

    Royal College of GP training facility (2018)

    1. Assessing People with Symptoms of CFS/ME Overview Est. Time: 45 minutes Author: Carolyn Chew-Graham Curriculum: 3.18 Care of People with Neurological Problems Description This lesson explores the challenges GPs encounter in the assessment of adults with chronic fatigue syndrome/myalgic...
  16. Suffolkres

    METRIC (UK) Royal College of GPs' online course on ME/CFS

    RCGPs is linked/affiliated?, 'allied' to the RCP? The Academy of medical Royal Colleges (the Academy) http://www.aomrc.org.uk/ Who we are The Academy of medical Royal Colleges (the Academy) is the coordinating body for the UK and Ireland’s 24 medical Royal Colleges and Faculties. We ensure that...
  17. Suffolkres

    David Tuller: Trial By Error: Steve Brine's Troubling Claim in Parliamentary Debate on ME

    @dave30th So who carries ultimate responsibility in Education Training etc? http://www.aomrc.org.uk/about-us/ Should not this august body be copied in n'est pas? I am extracting key info/names/ /movers and shakers within Academy to speed things up. The Academy of medical Royal Colleges...
  18. Suffolkres

    Sources of online information for medical professionals

    Add to that local "Mickel Therapy" which is equally expensive I am told. A local private provider had the temerity to put our local NHS logo on their site (as endorsement) without permission, until it was discovered by us and a complaint made by local NHS and us to Trading Standards.
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