Concerns are, not surprisingly, being raised with us about a job advert for this service and some of the information on the cause of ME/CFS on the website for this service:
More information on the Herefordshire and Worcestershire ME/CFS Service
ME Association Comment
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.
Concerns include:
In particular, is the use of the term ‘incremental pacing' – as this is not a term that is used in the new NICE Guideline on ME/CFS.
The new NICE Guideline makes it clear that incremental increased in activity, along with graded exercise therapy, are no longer recommended (in section 1.11.14 – Box 4).
The development of ‘psycho-educational interventions' for both patients and carers is also concerning as it is not clear what this means.
Service website
It is very disappointing to find in the various information leaflets that some of the main (but unproven) causes of ME/CFS are listed as:
Personality
Childhood trauma
Beliefs and attitudes
Excessive rest
Mood disorders
However, there is no mention of any biomedical abnormalities involving the brain, muscle, endocrine and immune systems.
Again, this information is not consistent with current thinking on the cause of ME/CFS, or the new NICE guideline on ME/CFS.
Feedback required
Before taking this any further with the NHS Trust it would be very helpful to have feedback from anyone who is using/has used this NHS referral service. Please email: feedback@meassociation.org.uk
Update 10.07.23
The Herefordshire and Worcestershire ME/CFS Service responded:
Dr Charles Shepherd has sent the following email:
Dear Herefordshire and Worcestershire NHS Trust
Thank you for withdrawing this job advert so quickly and agreeing to review the content of your website information on the causes and management of ME/CFS – hopefully bringing this into line with all the information and recommendations in the new NICE guideline on ME/CFS.
As you will have noted from our social media announcement I was intending to contact you once we had received some feedback from our members on your ME/CFS referral service.
Whilst there has been some positive comments on our Facebook page coverage there are several issues of concern that need to be addressed.
In particular:
- Some GPs do not appear to know that this referral service even exists. This has resulted in some people with ME/CFS being referred to Bath, Bristol or Birmingham for secondary care. And some have not been able to obtain a referral for expert help with either diagnosis or management.
- The use of various Work Sheets – we know from previous discussion with our members that most people with ME/CFS find these are time-consuming to complete and are not particularly helpful in their management. This is a view that I would share.
The ME Association produces a wide range of information on all aspects of ME/CFS for both patients and doctors.
The following (free to download) publications may be of interest and we would be happy to supply paper copies if required:
- Summary of Key Points from the NICE Guideline
- Diagnosing ME/CFS – The Importance of an Early & Accurate Diagnosis
- Long Covid and ME/CFS – Are they the same condition?
- Activity and Energy Management and Pacing
Our new booklet on pain management will be available shortly.
Kind regards
Dr Charles Shepherd
Hon Medical Adviser
Member of the NICE guideline committee on ME/CFS
Further reading
NICE Guideline on ME/CFS: An ME Association Summary
Pacing: Activity and Energy Management
Causation: What do we know about the causes of ME/CFS?
The leaflets can all be downloaded from the website shop.