Today (04.10.24), the Times has published Dr Charles Shepherd's (Honorary Medical Adviser to the ME Association) letter in response to the article ‘The Times view on the chronic fatigue syndrome inquest: Respect ME‘ (paywalled) which was posted online on the 30th of September. Read Dr Shepherd's letter below.
Dear Editor
The Times view on chronic fatigue syndrome inquest: Respect ME
The inquest into the tragic death of Maeve Boothby O'Neill has highlighted serious failures in the way the NHS cares and manages people with ME/CFS, especially those who are very severely affected with life-threatening malnutrition and require hospital admission.
The 2021 NICE guideline on ME/CFS provides clear recommendations on the need for proper community and hospital care. However, most local health providers still have no clinical care pathways in place for these very vulnerable patients and there is no specialist referral unit for the most complex cases anywhere in the UK.
A Department of Health and Social Care Delivery Plan on ME/CFS was set up by Sajid Javid back in 2022 and is due to deliver its conclusions and an action plan shortly. In view of the fact that the Coroner finds the situation so serious that she is preparing a Section 28 Prevention of Future Deaths Report, the Delivery Plan must now include an audit of all health trusts to discover whether they are following NICE guideline recommendations on service provision for the care of people with severe and very severe ME/CFS, and what they intend to do if they are not following NICE guideline recommendations.
The DHSC Delivery Plan must also address the continuing failure to encourage and fund high quality biomedical research into the cause and management of ME/CFS and post Covid ME/CFS
Dr Charles Shepherd
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE Guideline Committee,
Member of the 2002 Independent Working Group on ME/CFS
