The ME community requests Oxford NHS Trust leaflet be withdrawn
A collection of physicians, physiotherapists MPs and patient charities have written to Oxford Health NHS Foundation Trust to object to the content of a leaflet by their Psychosocial Response Group entitled Coping with the Coronavirus. It is one of a series of leaflets about Coronavirus and mental health, and has been adopted by other English NHS Trusts. (WAMES sincerely hopes no Welsh Trusts adopt it!)
“We, the undersigned, request immediate withdrawal of the Oxford Health NHS Foundation Trust leaflet “Coping with Coronavirus: Fatigue” for the following reasons:
- The leaflet conflates post viral fatigue with myalgic encephalomyelitis (“ME”)
- The leaflet purports to provide information for post-COVID-19 rehabilitation but is predominantly comprised of rehabilitation advice for ME / CFS
- The information provided is incorrect or misleading
- The advice provided is potentially detrimental to patients and may result in deterioration and exacerbation of disability”
The Oxford leaflet says this about recovering from Covid-19:
“Most of us will make a full recovery, but if you are still not back to your usual levels of energy, and you feel very tired and low, four months or more after you had the virus (or three months in children), then you may have post-viral fatigue.
Some people may go on to develop Chronic Fatigue Syndrome (CFS), sometimes also called Myalgic Encephalitis (ME), which is a condition which affects people in different ways. The main symptom is persistent fatigue (tiredness) and exhaustion which can be severe and disabling.”
It goes on to advise people not to rest too much and to avoid a ‘boom & bust’ approach to activity. The treatment for this? Pacing, activity management and Graded Exercise Therapy, and Cognitive Behavioural Therapy!
NB The leaflet has now been removed from the Oxford site but is still online at another Trust site.
Why are patients and health professionals objecting?
The letter of objection asks for the withdrawal of the leaflet and offers an alternative, as soon as it is available, which would recommend:
“The emphasis should be on management of post Covid-19 fatigue and preventing the development of ME/CFS. This comes from effective management of post viral fatigue, in the form of paced activity, adequate sleep and nutrition. Inappropriate management may result in development of ME and reduces the likelihood of people being able to return to work36.
The recommended treatments of CBT and GET do not improve employment and illness benefit status. As a matter of fact, a systematic review of available data found that after CBT and GET more patients were unable to work and more were receiving illness benefits.
In brief, patients are advised to practice pacing techniques, which are a primary tool for managing energy and avoiding post exertional malaise. While some pacing guidance advocates a “quota-contingent” approach (undertaking activities according to an amount/distance/goal with the aim of improving function) for someone with ME, or recovering from a viral infection, this will ultimately push them beyond their limits and cause a symptom exacerbation and subsequent decline in abilities.”
Trial By Error: Oxford-NHS Recommends GET/CBT for Post-COVID “CFS” Patients
Dr David Tuller, a senior fellow in Public Health in Journalism at the University of Berkeley in the USA, and long time opponent of the discredited PACE trial, has announced his intention to challenge the Trust:
“I mean, really. Isn’t this 2020? The notion that there are “thoughts and beliefs” that “maintain” patients in a state of illness should have been discarded with the failure of PACE. I plan to ask the Oxford Health NHS Foundation Trust for references for the (mis)information provided in the pamphlet. I will also ask about the role of the agency’s “psychosocial support group.”
Prof Tuller reports he has file a FOI request to find out more about the Psychosocial Response Group