The MEA wrote to the Torbay and South Devon ME/CFS Service on July 20th to express a number of concerns, especially in relation to the information on ME/CFS that was being provided in a ‘fact sheet' for health professionals. Copy of correspondence is here
We have now received the following reply and confirmation that the ‘fact sheet' for health professionals has been removed from the website:
Dear Dr Charles Shepherd,
Thank you for your email 20.07.2022 and the work the ME Association is doing to help ensure the new NICE guideline is implemented throughout the whole of the health service both in primary and secondary care.
Our service provision has been compromised by the impact of the pandemic so we have been prioritising the delivery of patient care while also taking time when we are able to review and update our service literature.
Our service has medical input, all be it only one clinic per month, so we are able to offer diagnostic assessments and that allows for a degree of professional expertise and clinical judgement to be added to any diagnostic criteria used.
We are aware of the new NICE Guidelines diagnostic criteria and are in the process of moving towards using that framework and will look for opportunities to disseminate this information to our referring GPs.
Our service has always taken an individualised approach to the management of ME/CFS and have never treated the symptoms of the condition as being due to deconditioning. We do recognise that people who have been ill for a long time can develop deconditioning as a secondary problem and it is difficult to address it in the context of someone having ongoing fatigue symptoms so it is one of the things our therapy programme can support people with when necessary.
Our service has never delivered a structured graded exercise programme, but we do support people whose condition is stable enough and are looking towards gradually building up activities.
Having used the NICE implementation document we feel that the service we provide is already aligned with the principles in the new NICE Guideline. We regularly receive positive feedback from people who have received care from our service.
We will continue to analyse, discuss and agree the updates needed for our service literature to ensure the new NICE Guideline principles are communicated to the wider medical community and our population suffering with ME/CFS. In the short term I have decided to close that page of our website until we have the newly ratified documents to upload.
I hope this response is of some reassurance that we will be addressing this situation in the near future.
Kind Regards
Kirsty Northcott
ME/CFS & Post Covid Fatigue Service Lead
Senior Specialist Occupational Therapist