The NICE guideline on ME/CFS- looking back and forward

This Wednesday, the publication of the revised/new NICE guideline in Great-Britain is being expected. The previous one from 2007 has had a major impact on the situation in many countries, and so will this one. A future guideline committee in the Netherlands for example will look at this guideline with more than an oblique eye.

NICE is the British National Institute for Health and Care Excellence, its role is to improve outcomes for people who use the NHS (the British National Health Service) and other public health and social care services.

Irish psychology professor Brian Hughes, who has previously written reviews of the PACE trial, compared in a recent blog the 2007 NICE guideline with the November 2020 draft guideline of NICE, which underpins the one to be published Wednesday. He concludes that the new guideline is not only different from the previous one, but superior to it. We highlight some pieces from his article on the subject, which appeared on August 10.

He writes:

“By extension, the so-called “science” of so-called “psychogenic illness” is on the verge of being discredited. The whole transition amounts to nothing less than a paradigm shift in what has long been a contentious area of medicine.

Of course, there has been pushback from some quarters. Recently I described a highly partisan news story that appeared in the BMJ. The BMJ journalist appeared genuinely confused as to why the old guidelines had to be changed at all. As they wrote:

In 2007, NICE recommended interventions such as cognitive behavioural therapy and graded exercise therapy for people with mild or moderate ME/CFS, whereas the draft update cites a “lack of evidence for the effectiveness of these interventions.” It is unclear, however, how the evidence became unsupportive.

I anticipate that this line — “it is unclear how the evidence became unsupportive” — will be the preferred narrative used by those who wish to discredit the new guideline when it is published next week.

For defenders of the status quo, it’s always about narrative. That is because when evidence and logic evaporate, narrative is all you have.

Many of these people are experienced media players. When the draft guideline appeared last November, they took to the media in unison to decry the proposed changes. Their chief weapon was wordplay: in what appears to have been a co-ordinated PR strategy, they persisted in referring to the old CBT and GET treatments as “evidence-based,” even though NICE had just revealed that the opposite was essentially the case.

In psychology, such wordplay is known as anchoring. It succeeds because it plants a set of assumptions in an audience’s mind. By pitching your own preferred view first — even if it is false — you shift the burden of proof onto anyone who contradicts you. You make your critics look as though they are the ones who are being contentious.


In the 2007 NICE guideline:

  • CBT was promoted as a treatment for ME/CFS — on the basis of 4 RCTs
  • GET was promoted as a treatment for ME/CFS — on the basis of 5 RCTs
  • The limitations of these studies were largely ignored by the NICE guideline committee

By contrast, in this year’s NICE guideine:

Source: The Science Bit – Brian Hughes
Introduction: Rob Wijbenga on behalf of the ME Global Chronicle
Picture: ME Centraal

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