NICE

The (Welsh) Health Minister Comments On Covid-19, ME, Rehabilitation & NICE

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From The Welsh Association of ME & CFS Support (WAMES).   The Health Minister Vaughan Gething has replied to the letter WAMES sent to him on International ME Awareness Day highlighting the links between Covid-19, PVFS and ME, and requesting a combined strategy for care.  We note that the forthcoming guidance on rehabilitation “will not be condition specific” so […]

A Continuing Saga Of Ineptitude

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From Invest In ME Research.   Comment After failing ME patients for so many years with their guidelines, and despite being taken to a judicial review (by patients), and despite the NICE guidelines director seeming to admit that the current guidelines were unfit for purpose, NICE were able to begin afresh and really concentrate on […]

A Morass Of MUS

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From the Spoonseeker.com Blog.   As you are probably aware, here in the UK, NICE are currently engaged in the lengthy process of revising their guidelines for ME/CFS. The current guidelines recommend the use of GET (graded exercise therapy) and associated CBT (cognitive behavioural therapy), the latter being used in this case to persuade patients that GET is […]

Trial By Error: My Six-Month Review

David Tuller

  By David Tuller, DrPH.   This month is the start of the second half of my one-year crowdfunding commitment to keep reporting on ME/CFS, so I figured I should review what I’ve done so far, what I still hope to do, and what changes have taken place during the last six months. So, here […]

Trial By Error: My E-Mail Exchange With NICE Chief Executive

David Tuller

  By David Tuller, DrPH.   On Friday, I had an e-mail exchange with Sir Andrew Dillon, chief executive of the NICE Guidance Executive. The other seven Guidance Executive members are various directors within the NICE hierarchy, including the communications director. This group will make the final decision about whether to accept the provisional decision of a […]

NICE Refuse To Take Down Harmful Treatments 25,000 Children Harmed ?

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  By Tina Rodwell.   I had my reply from NICE. For some reason David Hahalam did not want to talk to me. Well I am not important, am I? After all I am just one of the 25,000 parents that would like ME taken seriously to protect the children from harm. A good solid […]

Trial by Error: NICE Rejects My FOI Request

David Tuller

  By David Tuller, DrPH in Virology Blog.   The National Institute for Health and Care Excellence, the U.K. organization that develops clinical guidelines for medical conditions, has rejected my freedom-of-information request for the names of the experts involved in the reassessment of the guidance for the illness it calls CFS/ME. This isn’t surprising, since […]

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