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  1. Suffolkres

    UK CMRC 2018 Conference - Prof Stephen Holgate

    https://www.meassociation.org.uk/2011/08/professor-simon-wessely-column-the-spectator-26-august-2011/ Professor Simon Wessely column | The Spectator | 26 August 2011 From ‘The Spectator’, 26 August 2011 (think piece by Professor Simon Wessely) Mind the gap: it’s time to stop separating...
  2. Suffolkres

    UK CMRC 2018 Conference - Prof Stephen Holgate

    I remember SH Saying something to the effect, that ME and CFS Research applications had to go by way of a certain MRC Committee, and a certain specialty, the head or a member of which was the great SW! ... and guess what they did to the bids, like Julia Newton's at the time? Reject, reject and...
  3. Suffolkres

    [Just a registration] Paediatric immune dysregulation disorders - FITNET plus from Elise van de Putte ISRCTN12612526

    Thank's for this professional perspective which greatly helps us lay people see issues in a holistic and balanced way. Shame that those in Bristol don't appear to have that benefit..........or the benefit of hindsight....?
  4. Suffolkres

    Suggesting an additional advocacy direction

    I watched a piece on Newsnight BBC last night which was very interesting and relevant. 26 minutes into programme. https://www.bbc.co.uk/iplayer/episode/b0bnb3jf/newsnight-09102018 "Plus a look at how Bellingcat beat the MSM and a review of the papers" It's worth a watch especially in terms of...
  5. Suffolkres

    UK CMRC Conference 2018 - David Tuller

    The bird may have flown from his shoulder but the excrement remains hanging around for quite a while.
  6. Suffolkres

    UK CMRC Conference 2018 - Dr Luis Nacul

    Yes, with the research and Biobank work expanding and Suffolk and Norfolk benefiting from this..... Not that the "Famous Five", Norfolk and Waveney (Suffolk) CCGs) care or are interested. That's why we are about to aim a rocket of a letter to make them at least sit up!
  7. Suffolkres

    David Tuller: Trial By Error: My Latest Letter to Archives of Disease in Childhood

    "We are finding out more information all the time about vCJD which we are then able to pass on to patients who may be at risk," she added. Now here's a scary thing and aside......... https://www.ncbi.nlm.nih.gov/pubmed/16303485 The risk of transmission of variant Creutzfeldt-Jakob disease...
  8. Suffolkres

    David Tuller: Trial By Error: My Latest Letter to Archives of Disease in Childhood

    It's about a wholesale cover up of patient harm and culture of denial of harm; it affected a local man, A BT engineer who lived across the fields to me at Rushmere. His name was Mark Buckland. I have the newspaper stuff archived somewhere...
  9. Suffolkres

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

    About to finalise an Open Letter about the patient safety and patient risk from "insufficiency of services for ME" within Waveney (Suffolk) and Norfolk (5 CCGs). Waveney (Suffolk) and Norfolk (5 CCGs) have a new Joint Strategic Commissioning Committee who meet bi monthly- next meeting is the...
  10. Suffolkres

    Concerns about Cochrane

    'Cochrane: Collaboration or Cult? https://davidhealy.org/cochrane-collaboration-or-cult/ The Cult have even put SMC (the Science Media Centre), who co-ordinated the launch of the Cult Review of the HPV vaccine, in an awkward spot. Which side do SMC take now, when the BMJ are coming out in...
  11. Suffolkres

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

    The point is about "skepticism" and delivery of promise.... ( MRC) CMRC etc... and to illustrate a point, be wary!
  12. Suffolkres

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

    It would be good to show our "Open Letter' and show how £ billion service provision is being run by headless chickens and turkeys -albeit highly paid ones..... What would Bernard Matthews say? Just post about CQC failing to deal with Duty of Candour (medical negligence) - has important for both...
  13. Suffolkres

    Duty of Candour issues today in Health Service Jounal

    https://www.hsj.co.uk/quality-and-performance/cqc-cannot-be-relied-on-to-enforce-duty-of-candour/7023478.article?mkt_tok=eyJpIjoiTWpSaE5HWXdZelUzWmpFMSIsInQiOiJqSnZvVXBlNndkbFQ3XC9jMEk2MUNWU05kSkNUSldEcXJQRzFpK0p0SXVMRTlqZlwvaXg0NlMzYmxQWWdEeXI2Mnp1Nm43SHhBTm9cL29qVG42QTdBQzFPcWhJKzE2VkgrRXBiSVcz...
  14. Suffolkres

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

    Normal for Norfolk..Forget the fighters, Norfolk had NHS Billions..... About the CCGs in Norfolk and Waveney Local need – local choice With a population exceeding 1.1 million, Norfolk and Waveney’s CCG arrangements are in step with other areas of the country. In 2011, GP practices were asked...
  15. Suffolkres

    David Tuller: Trial By Error: The CFS/ME Research Collaborative Conference

    Exactly DT, in 2009, we convincingly proved our case locally for a new service (or reinstatement of the lost consultant one). This post and the following discussion has been moved to this new thread: UK campaign for better ME services in Suffolk and Norfolk
  16. Suffolkres

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

    This thread has been formed by merging several threads This discussion has been split from this thread Edit November 2024, this thread has been renamed to reflect changes in areas served. UK campaign for better ME services in Suffolk and Norfolk Exactly DT, in 2009, we convincingly proved...
  17. Suffolkres

    David Tuller: Trial By Error: The CFS/ME Research Collaborative Conference

    Although he allegedly co authored, "Allergy the Unmet Need"- https://www.bsaci.org/pdf/allergy_the_unmet_need.pdfmany years ago- things are not improving on that score in terms of Government action and support. In terms of the history of disease and conditions, this report could be written...
  18. Suffolkres

    David Tuller: Trial By Error: The CFS/ME Research Collaborative Conference

    Seeing SH in operation mode since about 2003, both as a member of the Royal Commission on Environmental Pollution and then the Collaborative makes me apprehensive. He's an "establishment", don't rock the boat man, in my view. He seems to say the "right" thing at the right time, to the "right"...
  19. Suffolkres

    Children with ME, schools and the problems of FII diagnosis

    Keep the group hugs coming for Tilly! Every little helps breaks the frustration and feeling of being isolated and marginalised by the small minded service providers like the school, and some local Officers and politicians who are backing their officers. RE MPs. A very mixed bag here in the...
  20. Suffolkres

    Children with ME, schools and the problems of FII diagnosis

    Absolutely Adam! Hope this helps broaden the debate! I happened to be well versed in this, professionally and personally.(Only "retired" /made redundant from LA Specialist Services for children with complex needs SEND, on the 31st August this year!) This was my area of work since 1991(...
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