National Institute for Health and Care Excellence
Professor dr. Gillian Leng CBE, Chief Executive
2nd Floor, 2 Redman Place
London E20 1JQ
Subject: guideline ME/cfs
By e-mail and by mail
Etten-Leur, August 18, 2021
Dear professor Leng,
According to the NICE message dated August 17, 2021, you have decided to pause the publication of the guideline ME/cfs that was scheduled for today after a period of three years.
‘NICE has used its usual rigorous methodology and process in developing this guideline but despite the best efforts of the committee, that followed these to the letter to bring together the available evidence and the real, lived experience and testimony of people with ME/CFS, we have not been able to produce a guideline that is supported by all.’
Your decision has far reaching consequences for patients, for science and for your own institute.
- Patients have been confronted with a very poor and damaging NICE-guideline since 2007. That guideline is based on hardly any scientific underpinning at all. Despite that, it recommends the detrimental treatments CBT/GET and GET. As you have found according to the draft guideline, the scientific base for these treatments is actually non-existent. As stated by NICE the quality of the evidence for these treatments is low to mainly very low.
As a result of your decision this obsolete and damaging guideline will be followed even longer. Patients will still be confronted with these treatments. For your information: our daughter has deteriorated after undergoing CBT in combination with GET and is bedbound for six years now.
- According to your message NICE has used its usual rigorous methodology and process. The question is what will be accomplished by talking to professionals who don’t agree on the outcomes of that process. Will you consider compromises? That would be inevitably contradictionary to the evidence you rigorously evaluated. By not adhering to the scientific considerations towards the low to very low quality of the evidence you will degrade the importance of science as a result of your decision. Apparantly eminence prevails over evidence.
- The mere fact that you decided to pause the publication (again) based on the very feable argumentation that a number of professionals will not accept the guideline and the fact that you are going to negotiate despite your rigorous methodology and process, undermines the position of NICE.
Once a guideline has been established along your rigorous process and methodology, professionals have an obligation to follow those guidelines. You don’t have to negotiate about that. That is what guidelines are for.
The credibility, trustworthiness and independent position of NICE have been damaged severely. That is not only the case in the United Kingdom. You can be assured that the whole world is following this process.
Based on the above I ask you to reconsider your decision and publish the guideline this week.
Lou Corsius, Msc Health Sciences
Copy to the Board: Mrs Sharmila Nebhrajani MA, OBE, chairman