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  1. Suffolkres

    Claim (PACE) ME/CFS cured by changing mind on way out HealthInsightUK Blog post by Jerome Burne (2019)

    I agree and will take matters further (Cambs & Peterborough) as it is our Clinical network area
  2. Suffolkres

    Claim (PACE) ME/CFS cured by changing mind on way out HealthInsightUK Blog post by Jerome Burne (2019)

    effects is reportedly low,” Golomb said. “Being vigilant for adverse effects in their patients is necessary in order for doctors to provide informed treatment decisions and improved patient care.” Worth quoting for GET approaches in patient info leaflets at Cambs and Peterborough insisted on by...
  3. Suffolkres

    Claim (PACE) ME/CFS cured by changing mind on way out HealthInsightUK Blog post by Jerome Burne (2019)

    The power of fellow professional's disbelief! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5316517/
  4. Suffolkres

    ME/CFS services in the United Kingdom

    "What would you do in my shoes?" Doing battle at Joint Health Overview and Scrutiny!! ...for 600 local group members..
  5. Suffolkres

    Claim (PACE) ME/CFS cured by changing mind on way out HealthInsightUK Blog post by Jerome Burne (2019)

    Doesn't help that GPs are being performance paid to push statins........ In 2010, my mother in law's GP was brilliant and agreed with our concerns and took her off against cardiac specialist consultant advice. I sent him the Beatrice Glomb research, APRIL Charity medical advisors telephone...
  6. Suffolkres

    ME/CFS services in the United Kingdom

    Cambridgeshire and Peterborough NHS guide to Graded Exercise therapy "To equip people affected by CFS / ME with the skills for self-management towards a better quality of life’." Jan 2017, reviewed in Jan 2019 This Health Service News item on Patient Safety is interesting today and follows...
  7. Suffolkres

    Claim (PACE) ME/CFS cured by changing mind on way out HealthInsightUK Blog post by Jerome Burne (2019)

    Have followed this for years to family/friends problems- Malcolm Kendrick's book is good and for older people Beatrice Golomb, MD, PhD, professor of medicine at University of California San Diego School of Medicine research is good. Statins can cause muscle breakdown and COQ 10 was recommended...
  8. Suffolkres

    Claim (PACE) ME/CFS cured by changing mind on way out HealthInsightUK Blog post by Jerome Burne (2019)

    Dr Aseem Malhotra @DrAseemMalhotra Dr Aseem Malhotra This guy is awesome!
  9. Suffolkres

    ME/CFS services in the United Kingdom

    And what better example to take to the NICE REVIEW and Committee!
  10. Suffolkres

    David Tuller crowdfund: Trial By Error: Reporting on ME/CFS and Related Controversies

    Just emailed a request to fund David! The Barclay Foundation Charity no. 803696 Contact details Email: mseal@ellerman.co.uk Tel: 02079150915 Public address 2Nd Floor, 14 St George Street, London, W1S 1FE Aims & activities Provision of grants towards organisations with a focus on, but not...
  11. Suffolkres

    ME/CFS services in the United Kingdom

    So sorry to hear this feedback about this fellow Eastern region service which has been abducted by BSP 'aliens'. What happened to the Cambs local support group who we used to liaise with? Back in 2004, we went to meetings in Cambridge to help knock the proposals into shape! Peterborough under Dr...
  12. Suffolkres

    ME/CFS services in the United Kingdom

    I am appalled at what this says. The service obviously has been taken over by aliens and is nothing like the one Terry Mitchell was in volved in. Terry would turn in his grave.......
  13. Suffolkres

    David Tuller crowdfund: Trial By Error: Reporting on ME/CFS and Related Controversies

    Having problems with the online donation as I am uk and I cannot find where to put Suffolk in! All the options are USA . Maybe a Noscript issue for me? Sorted and donated .......doh.....!
  14. Suffolkres

    A general thread on the PACE trial!

    I know Panorama has still an interest and I have had conversations with one of the producers in the last year/
  15. Suffolkres

    Claim (PACE) ME/CFS cured by changing mind on way out HealthInsightUK Blog post by Jerome Burne (2019)

    I absolutely agree that NICE is not to be trusted, nor the RCP the Guideline developers ..... operating behind closed doors....and NICE is being 'superceded" by NHS England and NHS Improvements it would appear. The whole process is a set up! So I will make a first Suggestion. How about...
  16. Suffolkres

    A general thread on the PACE trial!

    Jerome mostly covers other issues like diet ( with Patick Holford) and adverse reactions to medication, particularly the statins fiasco. He dips into ME and CFS, as and when. He knows Jo Edwards quite well I believe. He's attended Invest in ME conferences. He is quite approachable, so when asked...
  17. Suffolkres

    Claim (PACE) ME/CFS cured by changing mind on way out HealthInsightUK Blog post by Jerome Burne (2019)

    http://healthinsightuk.org/2019/04/22/the-claim-that-the-cure-for-the-crippling-fatigue-of-mecfs-was-to-change-your-mind-always-seemed-bizarre-now-it-really-is-on-the-way-out/ So glad he has taken up the mantle and run with it!
  18. Suffolkres

    ME/CFS services in the United Kingdom

    https://nspccro.nihr.ac.uk/ Who are the Research Office? We are the Norfolk and Suffolk Primary and Community Care Research Office. We work with the NHS, academics, health and social care practitioners and commissioners, patients and the public to develop, manage and support the delivery of...
  19. Suffolkres

    Announcing #MillionsMissing 2019! Join us!

    Barbieloo @BarbR666 What would you do in my shoes? pic.twitter.com/z1yPHsNoQU
  20. Suffolkres

    ME/CFS services in the United Kingdom

    A while back, NelliePLedge said, "Don’t want to be negative about your idea @Suffolkres as I know you’re battling to come up with something workable that keeps people away from GET........." Well by stealth of hand, Waveney CCG and Norfolk CCGS (5 in all), have shelved 10 years of co prodiction...
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