Leading ME charities, including ME Research UK, have joined in a Physios for ME led initiative which includes the All-Party Parliamentary Group on ME, the Forward-ME Group and other notable signatories in a united response to Oxford Health NHS Foundation Trust’s leaflet entitled ‘Coping with the Coronavirus‘.
Oxford Health NHS Foundation Trust offers both an NHS community-based service for people in Oxfordshire with CFS/ME and also a Chronic Fatigue (CFS/ME) Service.
The publication is one a series prepared by the Psychosocial Response Group in the context of Coronavirus and mental health. However, immediately it focuses upon the possible longer-term effects of the virus and elaborates the theme over a number of pages linking specifically to CFS and ME –
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.
Anyone can be affected by CFS, but there may be common themes for those with persistent problems. We know that there are both helpful and unhelpful ways to manage symptoms following a virus:
* Resting too much, for example spending most of the day in bed or doing very little, will lead to loss of fitness and muscle strength. When you then try to resume normal activities, you may find that you cannot do as much as you expect to do, and then rest more, causing further loss of fitness in a vicious cycle.
* Sleeping for hours during the day can lead to general malaise and problems sleeping at night. This in turn leads to more daytime fatigue and more resting, which in turn leads to more problems sleeping at night.
* Not allowing yourself time to recuperate and get better, such as going back to work too soon or resuming normal activities before you are fully well. People who have very high standards, like to do things well and do not like to let other people down, can push themselves very hard and do not allow themselves time to rest.
Three main ways you can improve the management of chronic fatigue are:
Pacing, and activity management
In reply, the signatories, representing a broad sweep of charities, groups and informed individuals rebutted the most egregious assertions in the leaflet and the letter begins
Opposition to Oxford Health NHS Foundation Trust: “Coping with Coronavirus: Fatigue”
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.
An e-mail copy of the letter was sent to Stuart Bell, Chief Executive of Oxford Health NHS Foundation Trust, and, in copy to Professor Chris Whitty – Chief Medical Officer for England, earlier today (20th April).
The full text of the letter signed by 24 representatives and individuals includes detailed rebuttals with citations to relevant studies, reports etc. is available in full here .