This morning I sent the following e-mail to key NICE executives involved in the effort to overhaul the clinical guidance for ME/CFS. I cc’d several stakeholders in the process as well.
Dear Sir Andrew and Professor Baker (and others)—
In an e-mail to Sir Andrew last year, I posed some questions concerning the involvement of NICE with the Improving Access to Psychological Therapies program being rolled out across England by the National Health Service. According to the NICE website, the organization is working with IAPT to “assess digitally enabled therapies for anxiety, depression and medically unexplained symptoms which offer the potential to expand these services further.”
Here is part of that e-mail from last fall:
Chronic fatigue syndrome is included in the list of thirteen conditions identified by “the NICE expert IAPT panel” as appropriate targets for interventions developed through this program. The IAPT site indicates that these interventions need to be consistent with NICE guidance. The site then refers readers to CG53 [the 2007 NICE guidance for CFS/ME] but makes no mention that this guidance is undergoing a full update.
Why is chronic fatigue syndrome still listed under the IAPT program? Does the Guidance Executive agree that it should be removed, since it is not a psychological or psychiatric disorder and the use of CBT and GET is very much under 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?
Despite positive developments in the NICE process since then, these questions remain. IAPT’s interest in digitally delivered therapies raises particular concern among ME/CFS patients and advocates because it suggests the possible or even likely adoption or endorsement of some version of FITNET-NHS. That is the Bristol University trial investigating online CBT for children, based on the purported success of earlier Dutch research. Critics of the PACE trial, including me, have documented serious methodological weaknesses in both the Dutch study and the U.K. version.
Last year, before NICE announced its decision to pursue a full update of the guidance for this illness, FITNET-NHS was being cited as a study of interest to be considered in a future review. But given the identified deficiencies of this research into online CBT, it has no place being considered during the development of health policy or clinical guidelines for ME/CFS.
As the NICE process for producing the new ME/CFS guidance moves forward, so does IAPT’s implementation of its expansion strategy. IAPT’s recent publications contain no indication, as far as I can tell, that anyone from NICE has communicated with anyone from IAPT about the paradigm shift occurring in perceptions about and treatment of ME/CFS. Those involved with IAPT seem not to have noticed yet that the CBT/GET approach is rapidly losing credibility worldwide.
Does NICE have any current plans to communicate with IAPT about ME/CFS, and specifically about IAPT’s ongoing roll-out of CBT and GET services for these patients? Or will such communications need to wait until the new guidance is released in 2020? Does NICE at least plan in the interim to suspend its cooperation with the NHS on developing digitally enabled or non-digitally enabled IAPT services related to ME/CFS? Since a new NICE guidance is in the works, developing any ME/CFS services for IAPT based on what will soon be an outdated document would seem to be a questionable way to invest limited public resources.
Thanks for your attention to this matter.
David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley
One response to “A Letter to NICE About the IAPT Program”
Dear Mr. Tuller: The problem with using the acronym ME/CFS is that it leaves the impression they are interchangeable. I think that is one problem that needs to be solved. Is it or isn’t it? If the criteria used was an ME accepted criteria but the doctor called it CFS, then it is the same. However, if CFS criteria was used, then ME and CFS is not the same. For research and doctors to be able to operate properly and be on the same page, it is vital that this confusion gets resolved as we do not know which definition either the doctor or the researcher is using. We can not depend on the research data because of this confusion.
Lydia E. Neilson, MSM
NATIONAL ME/FM ACTION NETWORK