Dr Charles Shepherd has written to AXA on behalf of the ME Association about the content of their website covering ME/CFS which has not been updated for some time. The full letter is shown below.
Dear AXA Health,
The ME Association is concerned that significant sections of your website information on ME/CFS are out of date – mainly due to the fact that this information was published in October 2018.
Since then, the National Institute for Health and Care Excellence (NICE) has produced a new clinical guideline on ME/CFS in October 2021.
This guideline contains clinical recommendations relating to symptoms, diagnosis, and management of a medical condition that is classified as a neurological disease by the World Health Organisation.
We would be grateful if you could address the following content:
- Update the list of symptoms required for a diagnosis (see section 1.2 Suspecting ME/CFS) and remove the term ‘extreme tiredness’ – as this is not an appropriate description of the activity-induced muscle fatigue and weakness that is a key diagnostic feature of ME/CFS.
- Update the management options with those that are now recommended (see section 1.11 Managing ME/CFS).
- Remove Graded Exercise Therapy as a management option (see section 1.11.14 Incorporating Physical Activity and Exercise). This was removed from the new guideline due to lack of evidence for efficacy and substantial patient evidence of harm.
- Update Cognitive Behavioural Therapy as a management option (see section I.12.28 CBT) to one that may help people cope with the adverse psychological consequences of living with a long term disabling illness.
Please also note:
Mental health conditions are not trigger factors for ME/CFS (see section 1.5 Assessment and care and support planning by an ME/CFS specialist team. See the bullet point – the impact of [ME/CFS] symptoms on psychological, emotional and social wellbeing.)
Sadly, most people with ME/CFS do not get better over time. A significant proportion will make some degree of improvement. However, full and sustained recovery only occurs in a small minority of people.
We also would like to mention that the NICE Guideline and NHS information pages use the nomenclature Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) and this is the preferred terminology.
Thank you for including a link to the ME Association website to signpost people with ME/CFS to find further information and support. This is much appreciated.
We would like to offer to check the information once revised, as we are happy to provide any further assistance necessary to help you to update your website.
We have also produced a guide to the overlap between ME/CFS and Long Covid which may be of interest
I look forward to hearing from you in due course.
With kind regards,
Update 30th January 2023
AXA Health has replied to a Facebook message (sent by Emma Jefferies, Social Media Specialist) to check they had received the email. Please see the image below:
Dr Charles Shepherd
Trustee and Hon. Medical Adviser. The ME Association.