UPDATE: 17.01.24 The British Medical Journal (BMJ) has responded to Dr Shepherd's email and stated it has been forwarded to the BMJ “editorial team for their immediate attention.”
Dr Charles Shepherd, Honorary Medical Adviser to the ME Association has written to the British Medical Journal (BMJ) to encourage them to update the BMJ Best Practice website information on ME/CFS.
The current website information appears to have been updated on 09.01.24, however, some aspects need to be amended further to ensure it is in line with the 2021 NICE Guideline on ME/CFS.
Letter to BMJ
Dear BMJ Best Practice
I have just been alerted to the fact that there has been a much needed revision (January 9th 2024) to the BMJ Best Practice information on ME/CFS.
So far I have only been able to look at the information that is not behind a paywall.
Whilst I welcome the importance given to post-exertional malaise as a key diagnostic symptom of ME/CFS, I was surprised and disappointed to find that some of the other information on the diagnostic pathway is not consistent with recommendations in the new NICE guideline on ME/CFS – especially when it is stated in BMJ Best Practice that symptoms have to be present for at least 6 months before a diagnosis can be confirmed when NICE makes a very clear recommendation of 3 months.
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BMJ Best Practice:
ME/CFS is characterised by a sudden or gradual onset of persistent disabling fatigue, post-exertional malaise (PEM), unrefreshing sleep, cognitive and autonomic dysfunction, and pain, with symptoms lasting at least 6 months.[1] These symptoms are otherwise unexplainable and persist for at least 6 months, are not alleviated by rest, and significantly impair quality of life.
NICE 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.
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I would therefore suggest that all of this BMJ guidance needs to be looked at again to make sure everything is consistent with the new NICE guideline on ME/CFS and that it includes all the key recommendations from NICE regarding diagnosis, management, children, severe and very severe ME/CFS:
And if not the reasons why should be explained.
There should also be a member of the NICE guideline committee involved in updating this information and at least one main author who is clinically involved with ME/CFS here in the UK.
Dr Charles Shepherd, Hon Medical Adviser, ME Association
Member of the NICE guideline on ME/CFS committee
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.
