Links to articles and comments on the ‘pausing’ of the publication of the 2021 NICE ME/CFS guideline.

WAMES receives letter from NICE with the announcement  17 August

WAMES writes to NICE  18 August

WAMES ponders the NICE guideline shockwave  20 August

From the ME community

• Physios for ME response to delayed NICE Guidelines: Physios for ME, 29 August
• Wilful ignorance?  Margaret Williams  28 August
• When NICE becomes nasty: Chronic Illness Inclusion (CII)  27 August
• Can vested interests prevent publication of ‘independent’ NICE clinical guidelines?  Sian Leary, #MEAction  26 August
• Update on the “paused” NICE guideline for “ME/CFS”: the case for individual/community publication: Valerie Elliot-Smith   25 August
• Letter to NICE Management: from Invest in ME Research   24 August
• Dr Nina Muirhead & Dr David Strain discuss ME long Covid, the NICE guidelines & GET: Woman’s Hour, Radio 4 [16-28 mins]   24 August
• Helen McDade is interviewed about the harms caused by GET, the NICE delay & the implications for long COVID [5 mins]  Radio Scotland  23 August
• Delay of British chronic fatigue syndrome guidelines is a setback for people with long Covid, by Profs David Tuller & Steven Lubet: Stat news   22 August
• NICEXIT: Royal Colleges look to “take back control” of treatment standards: The Science Bit, by Prof Brian Hughes   22 August
• NICE – contemptuous and contemptible: the case for community publication of the “paused” guideline for “ME/CFS”: Valerie Elliot-Smith, barrister    20 August
• NICE delay publication of the new guidelines: Pheobe Boag    20 August
• Sign our petition, sign the NICE ME/CFS guideline now: #MEAction news    19 August
• ‘We Are In The Dark’: Despair For ME Patients As Doctors Can’t Agree On Treatment: HuffPost   19 August
• Trial By Error: NICE Squares Off Against Royal College Bullies Over New ME/CFS Guidelines: Virology blog  19 August
• Letter to NICE Management from Invest in ME Research: IiME Research   19 August
• The “pausing” of the new NICE guideline: Tymes Trust statement  18 August
• The NICE Guideline ME/CFS: Personal Observations Dr Charles Shepherd: ME Association blog  18 August
• A Stonebird Statement on the failure to publish the NICE Guideline on ME/CFS   Youtube video [7 mins]    18 April
• Newyddion S4C: Interviews with patient Rhian Linecar, her husband Peter Gillard and Dr Nina Muirhead. [14:55–18:19]  18 August
• ME charities baffled by delay to NICE guideline: Forward ME
• NICE guideline delay and accommodation of unlawfulness:  Doctors with ME   17 August
• Interview with pwme Chantal and Sian Leary from #MEAction: BBC Radio Bristol John Darval (starts 2h12)   17 August
• Defenders of CBT and GET claim that healthcare workers know these work for some patients. But the PACE results indicate that if there is any real effect it would be too small to distinguish from natural recovery in routine practice. Prof Jonathan Edwards, S4ME
• Cambridge ME patients fear ‘dirty tricks’ at NICE will halt vital review of treatment guidelines: Cambridge news   13 August

From the Media and online sources

• We don’t need rigid guidelines to treat ME: Daily Mail  31 August
• What we’re not being told about ME: NICE won’t admit its treatment of the chronic disease doesn’t work: UnHerd   25 August
• RCOT response to NICE ME/CFS guideline delay: The Royal College of Occupational Therapists (RCOT) blog   25 August
• If we can’t agree on ME, we’ve got no chance against long Covid:
  We need to stop quibbling over guidelines and treat patients on a case by case basis, by Dr Phil Hammond: The Times 22 August
• Carol Monaghan hits out over delay to guidance for ME diagnosis and management: The National   18 August
• NICE ‘pauses’ publication of updated guideline on treating ME/CFS: Nursing Times   19 August
• Complaint to NICE: VIRAS   19 August
• A national health body seems set to throw millions of people under the bus: The Canary  18 August
• NICE withdraws landmark ME/CFS guidance: Disability Rights UK  18 August
• Outrage at chronic fatigue syndrome advice update pause: BBC News  18 August
• NICE pauses publication of unsupported chronic fatigue guideline: Pulse   18 August
• ‘We are in the dark’: Despair for ME patients as doctors can’t agree on treatment: UK News Today  18 August
• NICE delays publication of new guidance about ME/chronic fatigue syndrome: Chartered Society of Physiotherapy (CSP)   18 August
• Health watchdog PAUSES publication of NHS guidelines for treating chronic fatigue syndrome amid dispute over right way to treat the condition: Daily Mail
• NICE delays update to ME/chronic fatigue advice over lack of support: GP Online
• Health watchdog accused of ‘capitulating to vested interests’ over chronic fatigue as it delays new advice: Independant, Industrinews
• Health watchdog pauses plans to scrap therapy and exercise as treatments for ME – Nice delays publication of controversial guidelines on diagnosing and managing the condition following backlash from doctors: Telegraph
• UK health standards body delays new ME guidance in therapy row: Guardian
• Interview with Dr Alistair Miller & Sonya Chowdry, AfME: BBC Radio 4 (starts 1h 52)
• Lack of agreement forces NICE to pause publication of ME/CFS guidelines: theBMJ   17 August
• expert reaction to the news that NICE have paused the publication of the updated guideline on ME/CFS: Science Media Centre  17 August
• Exclusive: Four members of NICE’s guideline committee on ME/CFS stand down:  theBMJ    3 August