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 Workwell Foundation
The Workwell Foundation in America has also published a note of concern about the Oxford guidance on Fatigue. You can read their statement here.
Video is also available from Professor Mark VanNess, Dr Chris Snell and Staci Stephens who discuss why Graded Exercise Therapy is unsuitable for people with M.E.
The videos were recorded as part of the ‘Dialogues of a neglected illness' project by Natalie Boulton in the UK.
The ME Association
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