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.
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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.
Thank you David, Tom, Physio for ME, Forward ME, and everyone in the ME community who has advocated to make this victory for positive change a reality!
They must think no one is watching. Thank you for taking one more piece of garbage on.
Instead of just hoping everything will go away, they seem determined to keep trying. There must be a HUGE pot of money, and a lot of STATUS, riding on this, for them to keep pushing this.
Please keep stamping out the brushfires.
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money hungry *&$#+$#&* exposed – thanks David and those bringing it to light
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Excellent result. The advice to patients suffering from a potentially fatal novel virus with who knows how much resulting lung and other vital organ damage, to exercise and do some CBT in order to recover, was incredibly inappropriate and bizarre.
Thank you for keeping guard and maintain focus in spite of COVID-19
So securing with you and Tom Kindlon on board. Thanks from Denmark.
My jaw dropped so far reading this that I nearly did myself an injury. UNBELIEVABLE
It beggars belief that these harmful untruths are still being written.
Thank you to everyone that keeps tabs on the continued misinformation. Will this battle ever be over?
I am astounded and dismayed that 35 years after I began suffering from ME and have passed through several stages/ variations of the illness and still suffer effects in my 80th year that a Health Authority should produce such a dangerous and controversial
Paper.
Thank you to all campaigners and organisations that have spoken out against it.
It is terrible that they would still be promoting GET and CBT but I do think they should prepare for possible post-COVID-19 cases of ME/CFS.