Patient activism is not behind the British guidelines for CFS/ME

Live Landmark claims in an article on ScienceNorway December 1 (also in Norwegian on the Forskersonen site november 20) that the Norwegian health authorities do not need to take into account the new English guidelines for the treatment of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), made by the National Institute of Care and Excellence (NICE). Landmark believes the guidelines are the result of activism and not research. These are baseless accusations.

NICE put together an impartial committee with a large majority of qualified professionals. That the committee members take into account and change their mind as evidence emerges is part of the process. Landmark cannot question the integrity of the committee just because she does not like the conclusions. NICE specifically warns against using the Lightning Process (LP) course on ME patients, of which Landmark herself is an instructor.

Transparency at NICE

Everything NICE has done and assessed is transparent and can be read on NICE's website. It is quite a job, there are several thousand pages of evidence evaluations of all available research, the report is the result of three years of work.

It is especially the assessments of non-pharmacological treatment in Appendix G that are disputed. NICE reviewed hundreds of studies of non-pharmacological treatments and found these studies to be consistently of poor quality, using the evaluation tool GRADE. Landmark refers to a comment in the British Medical Journal from Jason W. Busse and others, claiming NICE used GRADE incorrectly, but the claim is refuted and explained as unfounded by Michiel Tack.

No factual arguments

Landmark also writes that the major professional bodies in UK oppose the new guidelines and refers to a joint statement from seven associations.

But what does the statement say? There are no substantial arguments against the work NICE has done, however they say they will continue to use graded exercise therapy and cognitive behavioural therapy.

As far as we have seen, there have been no substantial objections to NICE's work on the guidelines, just speculations that they are "pressured by activists".

Desire for better research and treatment

Landmark rejects patients' involvement and claims it to be anti-scientific activism, but what the patients want is better scientific rigor, i.e., better studies that control for systemic biases. We also want the press to check better what the conflict is really about, before describing patients as anti-science activists.

NICE does not recommend further use of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) because the studies do not check for systematic biases such as the placebo effect. The studies have been done on very broad patient groups, which makes it difficult to use the results.

The effect of exercise therapy and cognitive therapy is similar to placebo effects

The long-term follow-ups show that the control group catches up with the treatment group, and there is a zero effect on objective goals, i.e., the effect of exercise and therapy corresponds to a mild placebo effect. Patients want to be healthy, not just feel better for a shorter period of time.

Injuries and negative effects of gradual rehabilitation have not been well documented in previous studies. On the other hand, an analysis of surveys of a large number of patients in different countries shows that more than half of all participants became worse after exercise. It is reasonable for the committee to take this evidence into account when preparing exercise treatment advice.

No "new criteria", only further development of old ones

Landmark writes that NICE has made new criteria for diagnosis, but NICE recommends a slightly modified version of the diagnostic criteria developed by the US health authorities. Although there is some disagreement about which criteria are best, a consensus has emerged that PEM (Post Exertion Malaise) is the symptom that best distinguishes ME/CFS from other conditions.

NICE does the same as the health authorities in the USA, the Netherlands and Belgium have done, that is defining ME/CFS according to stricter criteria that exclude mental/psychosomatic causes of the ailments.

Norway should follow and update the guidelines for treatment of ME in Norway. This will provide a basis for being able to distinguish between the different types of disease that currently come under ME/CFS diagnoses.

It is crucial to try to find the right treatment for the right patient, something that everyone involved in ME/CFS should be able to support.