Over the next few weeks and months we will be monitoring how the existing hospital-based referral services for people with ME/CFS are responding to and implementing the recommendations on both Diagnosis and Management in the new NICE guideline.
We will also be monitoring how areas of England, Wales and Northern Ireland will be commissioning new services where no ME/CFS referral service currently exists in order to (in particular) comply with the requirements relating to Diagnosis in the new guideline:
1.4 Diagnosis
1.4.1 Diagnose ME/CFS in a child, young person or adult who has the symptoms in recommendation 1.2.2 that have persisted for 3 months and are not explained by another condition.
1.4.2 Primary healthcare professionals should consider seeking advice from an appropriate specialist if there is uncertainty about interpreting signs and symptoms at 3 months and whether further investigations are needed.
1.4.3 Refer adults directly to an ME/CFS specialist team (see box 3) to confirm their diagnosis and develop a care and support plan.
1.4.4 Refer children and young people who have been diagnosed with ME/CFS after assessment by a paediatrician (based on the criteria in recommendation 1.2.2) directly to a paediatric ME/CFS specialist team (see box 3) to confirm their diagnosis and develop a care and support plan.
Not surprisingly, people are expressing concerns about the website information for the Bedfordshire Chronic Fatigue Service, especially the emphasis on CBT and the use of the term Graded Activity Management (GAM).
We share these concerns and are aware that they have also been raised with a local MP and with Professor Gillian Leng, the CEO at NICE.
In relation to the use of the term GAM – this is not a term that is used (or recommended) in the new NICE guideline and it is not clear from the website information what is meant by GAM and when it will be used.
It is also a name that is very similar to the toxic term Graded Exercise Therapy – which the new NICE guideline makes clear should no longer be offered to people with ME/CFS.
It should also be noted that the information in the website section for GP referrals is not consistent with the recommendations relating to the clinical assessment and the diagnostic pathway in the new NICE guideline.
Before taking this up with the clinical lead for this service it would be helpful to have some feedback from people who have been to the Bedfordshire service – both before and after the introduction of the new NICE guideline.
Please contact us directly via feedback@meassociation.org.uk
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.
