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  1. Suffolkres

    Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline, 2006

    http://www.meassociation.org.uk/2007/06/minutes-of-the-appg-may-17/ Worth a re read…….’cos it’s still out there being used and in July NICE suggested they would reference and link to it….I think this needs to be incoporated within David Tuller's work as it's all inextricably linked....It...
  2. Suffolkres

    Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline, 2006

    I am seriously thinking of suggesting a peaceful protect outside of the FOM Conference in London in June? What do others think? Or we could sponsor some delegates like Jo Edwards and David Tuller to attend? http://www.occupationalhealthconferences.co.uk/index.html "25TH TO 27TH June 2018...
  3. Suffolkres

    Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline, 2006

    The sorry history of NHS Occupational Health Guidelines. http://www.meactionuk.org.uk/MW/2014/hansard-important-debates-on-me.pdf
  4. Suffolkres

    Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline, 2006

    The MUS/..."Fatigue", "Chronic Fatigue" plot thickens! Question is, can a leopard change it's spots? This NHS Guidance is critically important IMHO and I am determined to chase and get it dealt with! It's material to the NICE Scoping..... Work to date, contacts and with movers & shakers and...
  5. Suffolkres

    Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline, 2006

    Thanks for revisiting this SlySaint! Indeed NHS PLUS- Now morphed into NHS Health at Work is alive, well and spreading it's pernicious advice some 12 years on without review. Despite my and others best efforts in 2008, we could never get the damaging 2006 Report withdrawn. NHS Health at Work...
  6. Suffolkres

    S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

    I will look up the whole "Questionnaire" used by the Norfolk & Suffolk Service- which patients say can take up to an HOUR to do---- which the service manger told us -they uploaded to the "NOD Database"- yes, you know the one- BACME-Bristol -EC etc- BUT this was closed down in 2015 and...
  7. Suffolkres

    S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

    Another consideration. CCGs?/NHS ME and CFS Services have to PAY to use the Chandler Scale I am told as it is a "commercial product". Patients find it lengthy, onerous and challenging- and for what outcomes....? It should be discontinued on lack of cost effectiveness and for dissipating the few...
  8. Suffolkres

    NICE announces next steps in updating its guideline on ME/CFS

    No guesses for what I am talking about here! ( I also posted this on thread about closure of East London Service) Oh how the mighty have fallen- "Barts and services linked to it such as an in Essex..." I learnt that funding was cut by the CCGs by 50% last year, when I was researching for our...
  9. Suffolkres

    NICE announces next steps in updating its guideline on ME/CFS

    An addendum- most of the statements in the bubbles I took from NICE's own literature on their website. (Say it and it is/will be done)- ....or not as the case may be...! I did it in preparation for the Engagement meeting.
  10. Suffolkres

    The Chronic Fatigue Service run by East London NHS Foundation Trust (ELFT) is closing

    Oh how the mighty have fallen- "Barts and services linked to it such as an in Essex..." I learnt that funding was cut by the CCGs by 50% last year, when I was researching for our local dilemmas in Suffolk & Norfolk. In my view, the closure of services has nothing to do with NICE -(who I...
  11. Suffolkres

    NICE announces next steps in updating its guideline on ME/CFS

    I received no alert about this which is unacceptable! I registered as a Stakeholder then was told by NICE HR that I was not permitted as a local/ regional group! I guess it will be worth muscling in on the May Scoping just to give them a hard time….. NICE is all about the noise, not any...
  12. Suffolkres

    EDS and ME - is there a connection? hEDS

    Jo, I suggest a conundrum here! NICE need to catch up with "patient experience" even if the "science" at present is not there. They might actually learn something and be able to effect some positive change. People you have "close to you", I suggest may be part of the problem. They are...
  13. Suffolkres

    Format of NICE stakeholder meeting?

    From what I remember and what i'm checking through now, the legal challenge would be different this time due to changes in status of NICE since then, 2005 and in 2013, and to the new legislation and hierarchy of accountability and responsibility, 2012, 2014 and recently Accounting Officer...
  14. Suffolkres

    Format of NICE stakeholder meeting?

    Sally, I would be happy to share my final 3 pages with your two so we know we may be singing from the same hymn sheet.....? let me know. (my 3 pages sits alongside my submissions in both March, -via 125% group response to NICE Intermediate Care and reablement and my July response to the review...
  15. Suffolkres

    Format of NICE stakeholder meeting?

    I too have prepared "one I did earlier"- 3 pages! I suggest we also send them electronically and request written replies formally to any points not raised or covered tomorrow? This morning I have come across some useful background material about compliance and accountability.........DH...
  16. Suffolkres

    Format of NICE stakeholder meeting?

    I am grappling with a significant question I wish to have answered by NICE for tomorrow. I want to know if they are obliged to achieve legal compliance with the legislation, in particular the following; 2003 Health & Social Care Act (Community Health & Standards, ( Standards for Better Health)...
  17. Suffolkres

    Format of NICE stakeholder meeting?

    Are NICE to be toothless wonders?
  18. Suffolkres

    Format of NICE stakeholder meeting?

    Some of my thoughts for Tuesday........
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