By David Tuller, DrPH
In this traumatic time, small victories should be savored. Last week, I noticed a tweet from patient and advocate Tom Kindlon about a pamphlet from the Oxford Health NHS Foundation Trust, the entity that oversees NHS services in the Oxford region. Other patients and advocates also flagged it on social media and sent it to me directly.
The pamphlet addressed concerns about possible post-COVID-19 cases of what it called “chronic fatigue syndrome,” and then promoted graded exercise and cognitive behavior therapy as treatments. This dung heap read is if it were written by Simon Wessely, Trudie Chalder, and Michael Sharpe way back in the early 1990s. It was credited to something called the “psychosocial response group”–a mysterious-sounding phrase that did not yield any results when I searched for the term on Oxford Health’s website. But the acronym–PRG–is kinda cool-looking.)
(Are the “psychosocialists” the same as the “biopsychosocialists”–with the difference that they are now making it clear the “bio” doesn’t really matter much to them? Hm.)
In addition to blogging about this new development, I also filed a freedom-of-information request to find out more about the PRG and the scientific literature reviewed to produce this nonsense. Over the weekend, a group called Physios for ME [Corrected same day: originally I wrote “Physios with ME”] organized an open letter to Oxford Health NHS Foundation Trust, signed by leading ME advocates. The letter was sent and posted today.
Oxford Health NHS Foundation Trust has now apparently taken down the pamphlet, although luckily it had been saved and stored in online archives. I will be very interested in reviewing the response to my freedom-of-information request.
The ME Association has posted the following update from medical director Dr Charles Shepherd:
We have today signed an open letter calling for the withdrawal of an inaccurate and potentially harmful document about which we have received many complaints.
The booklet from Oxford Health NHS Foundation Trust Psychosocial Response Group, was about coronavirus and fatigue and appeared as part of series that can still be viewed on their website.
However, it would appear that the booklet containing inappropriate and potentially harmful guidance on fatigue (which also talked about managing post-viral fatigue syndrome and ME/CFS) has now been removed.
The letter was initiated by Physios for ME €“ a group of physiotherapists with a special interest in the neurological disease €“ and signed by members of Forward ME €“ the advocacy group chaired by the Countess of Mar. The letter was also signed and approved by the ME Association.
The main concerns about the booklet were:
- that it conflated post viral fatigue with ME/CFS
- it purported to provide information for post-COVID-19 rehabilitation but is predominantly comprised of rehabilitation advice for ME/CFS
- it provided incorrect and misleading information, which was potentially detrimental to patients and might have resulted in deterioration and exacerbation of disability, by recommending graded exercise therapy, without any consideration of the potential harms.
As well as highlighting the issues with the leaflet, the letter sets out clear evidence for pacing, the symptom management people with M.E. tell us they find most helpful.