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  1. Suffolkres

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

    https://crowdfund.berkeley.edu/ Surely Berkeley should have some sort of accolade /award to those academics on their books or worthy causes who bring esteem and glory to them.. DT tops the list again out of the current 19 active projects, again and again!
  2. Suffolkres

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

    You are not the only one to use this term. Sir Mark Baker at the NICE Scoping meeting last year, in answer to my questions about dark forces lurking in the background, said to me, "Oh you mean the ME mafia......!"
  3. Suffolkres

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

    I thought this was a further testimony to our "activism', '.......vexacious or not'! I might ask permission to lift this and put it on our NHS Service blog and website! https://www.anhinternational.org/our-work/activism/ Activism “Change your life today. Don't gamble on the future, act now...
  4. Suffolkres

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

    Much as I find the need to Crowdfund a necessity in this modern age, having had to do it myself in 2016 for an environmental legal case with CrowdJustice in the UK, I have to say, I did find it stressful and a worry! So a double thank you to David for doing this for us, and I do hope the stress...
  5. Suffolkres

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

    28 April 2019 at 6:49 pm Thank you for this short pithy response to Jerome's excellent resume'. 'The claim that the cure for the crippling fatigue of ME/CFS was to change your mind always seemed bizarre. Now it really is on the way out…' Oh,.... if only .....and... I wish! NICE is currently...
  6. Suffolkres

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

    Jerome/statins/Adverse Effects etc.. Fascinated to find that Beatrice Golumb is also interested in CFS....... Buried in this artiticle/.... https://health.ucsd.edu/news/releases/Pages/2018-08-29-researcher-links-diplomats-mystery-illness-to-radiofrequency-microwave-radiation.aspx...
  7. Suffolkres

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

    Jerome/statFascinated to find that Beatrice Golumb is also interested in CFS....... Buried in this artiticle/.... https://health.ucsd.edu/news/releases/Pages/2018-08-29-researcher-links-diplomats-mystery-illness-to-radiofrequency-microwave-radiation.aspx ".....Golomb, whose undergraduate degree...
  8. 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
  9. 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...
  10. 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/
  11. 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..
  12. 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...
  13. 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...
  14. 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...
  15. 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!
  16. Suffolkres

    ME/CFS services in the United Kingdom

    And what better example to take to the NICE REVIEW and Committee!
  17. 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...
  18. 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...
  19. 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.......
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