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  1. Suffolkres

    Jerome Burne: "Independent investigation reveals NICE approved treatment only a fraction as effective as experts claim it is", 2016

    I can honestly say, Jerome is both really interested and truely interdependent thinking! He first wrote on the ME situation in the late 1990's early 2000, Wessley and Hooper! 'For ME sufferers, the bitter feud between the scientists as to whether it is a genuine physical complaint, or more a...
  2. Suffolkres

    NICE Guideline Committee Register of Interests, 9 April 2019

    Stage 1 and Stage 2 with NICE, then the Ombudsman next if we were not happy and not accepting NICE responses.
  3. Suffolkres

    NICE Guideline Committee Register of Interests, 9 April 2019

    LOcalME have drafted a stage 3 complaint to the Ombudsman - not yet sent ( my fault...)
  4. Suffolkres

    Royal College of Physicians article: "Do you really believe in ME?" by Dr Nina Muirhead

    It has repeatedly said that many with ME are 'atopic', have allergies and intolerances. I think the figure was about 60%. It applies in my family, husband/son.
  5. Suffolkres

    UK NICE - Projects to support the development of the NICE guideline on ME/CFS: diagnosis and management

    Also work was recently commissioned by Waveney CCG via Steven Wilkinson Dr Steven Wilkinson The Norfolk and Suffolk Primary and Community Care Research Office "Agenda Item: 17Fran O’Driscoll, Deputy Director Commissioning NHSGYWCCGJSCC 19th February 2019 Page 3 of 3 Dr Wilkinson has also...
  6. Suffolkres

    UK NICE - Projects to support the development of the NICE guideline on ME/CFS: diagnosis and management

    Ethical approval was secured for the Biobank research which served the severely affected in Norfolk and Suffolk, originally in 2011. At that time and until 2018, none of the researchers were involved in the service delivery.
  7. Suffolkres

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

    I promise I will too but nearer the end so I can do him justice!
  8. Suffolkres

    Updates from the UK ME/CFS Biobank / CureME team

    I know, but his appointment is for the wider more common good. Know anyone who wants this job?!!
  9. Suffolkres

    United Kingdom - Suffolk and North East Essex ME/CFS services

    Our loss, their gain, but even the 6 months of cover was SO worthwhile. ..... It's a model, now tested and one to build on!
  10. Suffolkres

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

    Hi A and S and young patient on GDC. Wondered if the committee is now complete as I believe the GDC met on the 29th March? I do hope the vibes were encouraging but I am not holding my breath........
  11. Suffolkres

    NHS Health at Work April bulletin

    Might be worth a look.......? http://www.nhshealthatwork.co.uk/news-bulletin.asp?info=bulletinApril19 The next edition will be circulated on 8th May 2019. In this edition: 1. 2. 3. 4. 5. 7. NICE guideline on Workplace health: long-term sickness absence and capability to work (update)...
  12. Suffolkres

    MUS services in UK and other MUS related issues

    Ahhhhhhhhhhhhh.....!
  13. Suffolkres

    Medical Independent Ireland: 'It's all in the mind' (2019) George Winter

    Merged thread https://www.medicalindependent.ie/its-all-in-the-mind/?fbclid=IwAR3ZCLjpUeBaLfMdn554wSMB0wRi_p6wnyzz_ncYxvjWXnD38tFFQ7Rt03Y This is worth a read and goes well with Brian Hughes' book! ........and a great comment too! There is no greater or more dangerous takeover by psychiatry...
  14. Suffolkres

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

    Don't apologise. We are will with and are very grateful for your support and professionalism. I will get my cheque book out!
  15. Suffolkres

    #MEAction: A response to Dr Mark Porter’s article about ME in The Times

    Well. this is ironic! "outcome switching"......or "moving the goal posts' https://www.bbc.co.uk/sounds/play/m0003jhq Inside Health Moving the goalposts in research,.......?????? or being a busy bee covering both sides of a known problem.........shame about Ben G though....
  16. Suffolkres

    The actual views of "ME activists" are...

    Fat chance! Suffolk CCGs this week......https://www.eadt.co.uk/news/suffolk-ccgs-improving-access-to-psychological-therapies-1-5955640 £2.6million NHS cash for Suffolk to target link between mental and physical health Andrew Papworth andrew.papworth@archant.co.uk @andrew_papworth PUBLISHED...
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