A medical lesson in the failure to listen to the patient’s voice in CFS/ME: on the need for co-production in CFS/ME (and #LongCovid ) services #meawarenesshour #pwme #MECFS

The new NICE draft guidance for CFS/ME services advises against the use of graded exercise therapy (GET) and CBT as curative treatments for CFS/ME:

These two treatments have been central to the clinical management of CFS/ME in the U.K., despite widespread reports of adverse effects by patients in charity surveys (most particularly in response to GET).

As Robert Saunders notes,“surveys consistently show that patients experience a worsening of their condition following these therapies [...] 67.1% of the ME/CFS patients [..]surveyed who had been given GET reported that their physical health had deteriorated following treatment.”

Despite knowledge of consistent reports of harm by patients surveys, and widespread criticisms of the #PACE trial by researchers, NHS services maintained that there was no evidence of harm in relation to these therapies.

Patients were directed to the PACE trial in evidence of this claim. However, it is notable that no offical channel existed for patients to register adverse effects in response to these therapies in the context of treatment/clinical practice.

“One of the difficulties in assessing the harms of GET & CBT is that the Medicines & Healthcare products Regulatory Agency does not allow adverse health events resulting from non-pharmacological treatments such as GET/CBT to be recorded through its Yellow Card Scheme” (Saunders).

The failure to listen to patients in the context of therapy sessions has typically resulted in fraught encounters with medical professionals for patients with CFS/ME and has frequently encouraged patients to disengage with NHS services.