Letter to South Devon and Torbay ME CFS service

MEA writes to Torbay and South Devon ME/CFS service about their ‘Fact Sheet’ on ME/CFS

Dr Charles Shepherd has written to another ME/CFS service to point out that their public information is at variance with the 2021 NICE Guideline. The letter is shown in full below.

Dear Torbay and South Devon ME/CFS Service

Re: https://www.torbayandsouthdevon.nhs.uk/services/me-cfs-service/

It is now 9 months since publication of the new NICE guideline on ME/CFS.

The ME Association, with help from our members, has been monitoring how the existing ME/CFS specialist referral services throughout the UK are implementing the recommendations in the new NICE guideline on both diagnosis and management of ME/CFS.

Unfortunately, when it comes to website information, we are regularly dealing with ME/CFS referral services where their information is now out of date and not consistent with what the new NICE guideline is trying to achieve in relation to early and accurate diagnosis of people with ME/CFS along with a high standard of multidisciplinary management which acknowledges that ME/CFS is a complex multisystem disease.

Having reviewed some of the information on the Torbay and South Devon NHS Trust website for both clinicians and patients 

there are several instances where this is not consistent with the new NICE guideline recommendations.
In particular, the ‘Fact sheet' for clinicians …..is using the Fukuda diagnostic criteria, which is far more appropriate to selecting homogenous groups of people for research purposes than for clinical use.

The Fukuda criteria involves a different set of symptoms, exclusion criteria and investigations to the recommendations in the new NICE guideline – as well as having a different (ie at least 6 months of symptoms) timeline for confirming a diagnosis of ME/CFS.

So it appears that people in Devon have to have Fukuda defined symptoms for at least 6 months before a GP referral can be made for diagnostic confirmation and specialist assessment – instead of 3 months from onset of symptoms as is now recommended by NICE.

The clinician information also contains statements on deconditioning (‘Musculoskeletal problems are a result of deconditioning causing weakness, reduced stamina and pain) and the use of CBT (to address ‘unhelpful thoughts and behaviours’ and ‘habitual unhelpful behaviour patterns') which are inaccurate, unacceptable to the ME/CFS patient community, and are not consistent with the new NICE guideline.

Having reviewed all the evidence, the NICE guideline committee concluded that it is no longer appropriate to recommend that ME/CFS should be treated with CBT and graded exercise treatment (GET) on the flawed scientific basis that symptoms are perpetuated by deconditioning and unhelpful illness beliefs and behaviours.

This ‘fact sheet' does therefore need to be withdrawn as a matter of some urgency and replaced with information that is up to date and consistent with the new NICE guideline on ME/CFS.

I have not had time to read all the information literature on the website.  However, there is one serious error in the patient information leaflet where it still refers to the use of GET as a treatment for ME/CFS.

Having reviewed all the clinical trial evidence, the NICE guideline committee also concluded that there was no significant evidence of benefit from GET and significant evidence of harm.

The new guideline therefore recommends that GET should not be offered as a treatment for ME/CFS.

One final point – as with many long term conditions, some people with ME/CFS will develop depression or anxiety.  But these should not be listed as symptoms of ME/CFS.

We would therefore be grateful if you could give this matter your urgent attention and let us know what action is being taken.
If the MEA can be of any assistance in producing patient friendly information based on the new NICE guideline please let me know.

Kind regards
Dr Charles ShepherdHon Medical Adviser, MEA

Copy to:

Dr Nina Muirhead – Co-Chair, DHSC Group on ME/CFS Medical Education and Training

Carol Monaghan MP – Chair, APPG on ME

Baroness Ilora Finlay – Co-Chair NICE guideline committee on ME/CFS

Anna Gregorowski – BACME

Dr David Strain – University of Exeter

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