Dr David Tuller: My Predictions for NICE ME/CFS Guidance, Reprise


Senior Member

Trial By Error: My Predictions for NICE ME/CFS Guidance, Reprise

By David Tuller, DrPH

UC Berkeley’s crowdfunding campaign ended successfully last Saturday–thanks, all!!–but I haven’t managed to get much done in the news-filled week since then. I was prepared to have to join the resistance in the hills around the Berkeley campus, but now that has become unnecessary. Whew!

Now that I no longer have to worry about the looming threat of dictatorship, I can get back to regular things–like the coming release of the draft of the new ME/CFS clinical guidance from the UK’s National Institute of Health and Care Excellence. That draft will be released on Tuesday, so we will see how much the work of the last few years to discredit the delusion proffered by the GET/CBT ideological brigades–specifically, that their treatments lead to significant improvement and even recovery.

Do read the BACME document from David's link. Notice on the front page how they change CFS/ME which they have to use at the top as their name is based on it, but underneath it becomes Myalgic Encephalomyelitis/CFS.

Could this be considered significant?


Senior Member
The BACME document the other day seemed to basically just rename GET to Graded activity. I am not as convinced. Given much of CBT as taught by the NHS contains activity increasing recommendations it isn't any use to those with ME/CFS in its current form, they will need to dramatically rewrite it to be supportive to those with severe disabilities.

If David is right all the CFS Clinics across the country will be shut down early next year, the entire lot is run by psychologists and physiotherapists, they have zero biological knowledge. I don't see that happening the entire system is stacked against the patients, they have ignored nearly a decade of being ripped apart internationally. I expect a rebrand with a different premise as to why CBT and GET#2 is used. There will be zero in the way of actual useful research funding nor on using experimental drugs that work for some people nor trying to determine if people have something treatable that might be the cause of their symptoms. I question even whether the criteria will be properly updated for diagnosis. I just can't see it coming from this atrociously run organisation.