Dr Charles Shepherd has written to Buckinghamshire Healthcare NHS Trust regarding an information leaflet they had in the public domain for children and young people with ME/CFS. The Trust has now responded and the leaflet has been removed pending an update.
Dear Buckinghamshire Healthcare NHS Trust,
Re: Patient Advice Sheet: Chronic fatigue syndrome in children and young people: Review date August 2022
Please could you withdraw and urgently review the content of the patient information leaflet as some key parts of it are not up to date. Neither are they consistent with the recommendations on diagnosis and management of children and young people that are contained in the NICE guideline on ME/CFS that was published nearly two years ago in October 2021.
In particular:
- NICE now uses ME/CFS nomenclature.
- High adrenaline release is a very speculative and unproven cause of ME/CFS. It is not referred to in the NICE Guideline.
- The symptom list fails to mention three key diagnostic symptoms – post-exertional malaise/symptom exacerbation, cognitive dysfunction and dysautonomia (ie orthostatic intolerance, PoTS). Tiredness is not an appropriate description for the debilitating fatigue that people with ME/CFS experience.
- There is a very specific recommendation in the NICE guideline regarding the three month timeline for suspecting and confirming a diagnosis of ME/CFS and early referral to a paediatric specialist team for preparation of a care and management plan.
- The cause of fatigue in ME/CFS is complex and involves both central (brain) and peripheral (muscle/mitochondria) components. It is not due to deconditioning.
- The section covering activity and energy management should therefore be consistent with the new NICE guideline recommendations and not based on the assumption that reduced mobility is caused by deconditioning.
I was a member of the committee that prepared the new NICE Guideline and the ME Association has a consultant paediatric adviser, Dr Nigel Speight, who has extensive experience in this area of medicine.
We would both be happy to help to make sure this information is up to date and consistent with the NICE Guideline recommendations as well as being well received by children with ME/CFS and their parents.
We can also supply you with any of our literature that covers all aspects of diagnosis and management of ME/CFS and the overlaps with Long Covid.
Regards,
Dr Charles Shepherd
Hon Medical Adviser, The ME Association.
References:
- Buckinghamshire Patient Advice Sheet: Chronic fatigue syndrome in children and young people (August 2018).
- The NICE Guideline on ME/CFS: Diagnosis & Management (October 2021).
- The ME Association website literature list.
CC'd Chief Executive Buckinghamshire Healthcare NHS Trust.
UPDATE
The ME Association received the following reply on 05.07.23
Dear Dr Shepherd,
Thank you for your email and for getting back in touch. Your original email dated 12 June 2023 was forwarded to our Chief Executives Office on the 13 June 2023. Please accept our sincere apologies for the delay in replying to you.
We can confirm that your email was shared with the Chief Executive, Chief Medical Officer, Chief Nurse, and relevant clinical leads. A review of the leaflet is currently underway , in light of the information that you (Dr Shepherd ) kindly provided. The leaflet has been removed from our website pending this review.
Thank you also for your kind offer to support this review.
Kind Regards
Gemma Boddington
Patient Experience Administrator
Buckinghamshire Healthcare NHS Trust
Dr Charles Shepherd
Trustee and Honorary Medical Adviser
Member of The NICE Guideline Committee on ME/CFS (2019-21) and The DHSC Research Working Group (2022-23).
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.
