Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
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.
The ME Association
Please support our vital work
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.
Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!
ME Association Registered Charity Number 801279
The post Letter of Concern sent to Oxford Psychosocial Group re: Coronavirus and Fatigue | 20 April 2020 appeared first on ME Association.
from ME Association
https://www.meassociation.org.uk/2020/04/letter-of-concern-sent-to-oxford-psychosocial-group-re-coronavirus-and-fatigue-20-april-2020/?utm_source=rss&utm_medium=rss&utm_campaign=letter-of-concern-sent-to-oxford-psychosocial-group-re-coronavirus-and-fatigue-20-april-2020
from https://www.meassociation.org.uk
#cfsme
No comments:
Post a Comment