Tuller / Trial By Error: Another Letter to NICE’s Sir Andrew Dillon

[Cheshire]

I would like to congratulate NICE on its decision to pursue a full update of CG53, the CFS/ME guidance, rather than accept the surveillance report’s recommendation to leave it as is. The Guidance Executive made the right call, based on the current science—and given the international controversy over PACE trial and other CBT/GET trials. In NICE’s announcement, the list of concerns about the 2007 guidance was a fair accounting of what has troubled people for years and led to the outpouring of stakeholder comments opposed to the initial recommendation.

http://www.virology.ws/2017/10/17/trial-by-error-another-letter-to-nices-sir-andrew-dillon/

 

[Valentijn]

Some excellent questions in Tuller's letter to NICE:

If these clinics and doctors prescribe CBT and/or GET, citing NICE as evidence and support, do they now have an obligation to explain that the effectiveness of these two treatments is under serious question?

If it is not removed from under the auspices of IAPT, does that mean NICE intends to encourage the development of digital methods of delivering CBT and GET to people with CFS/ME, even as the guidance itself undergoes a full update?

Given the current effort to revamp the CFS/ME guidance and the significant evidence of actual physiological dysfunctions, does NICE feel comfortable at this point describing the illness elsewhere as a “functional” symptom that is “not primarily” organic in nature but is “likely to have an emotional basis”?

 

[Joel]

Good to know David Tuller has remained focused on NICE, and isn't letting off just because they said they're going to review the CFS/ME guidelines. It's essential that the community maintains pressure on NICE to keep them honest and ensure the best outcome. We can't leave it to the powers that be as we largely did ten year's ago.

 

[Adrian]

The question I've always wondered about is does Nice give doctors cover for not talking about potential side effects of GET. If the guidelines are under review then perhaps that makes the approach of not talking about the potential to make people worse even less justifiable.