We wrote to the Royal College of Psychiatrists about their website information on ME/CFS on November 2nd.
We have not received a reply relating to our concerns about the content and the offer to help with providing updated and accurate information that is consistent with the recommendations in new NICE guideline on ME/CFS. Not even an acknowledgement!
However, the out-of-date and inaccurate information has now been removed from the RCP website.
The following was posted on 02.11.23:
The ME Association has written the following letter to Dr Shubulade Smith (President of the Royal College of Psychiatrists) regarding their website information on ME/CFS.
Copy of the letter below:
Dear Dr Shubulade Smith
Re: Information about the diagnosis and management of ME/CFS in children and young people on the Royal College of Psychiatrists (RCP) website:
I am writing to draw your urgent attention to the fact that this information and guidance on ME/CFS, which was published in July 2015, was due to be reviewed in July 2018. This has clearly not occurred.
As a result, there are significant parts that are now out of date, inaccurate, or even potentially harmful – eg advising that graded exercise therapy/GET is a management option in the section on Treatment when GET is NOT recommended in the new NICE guideline on ME/CFS.
There are also significant differences and omissions to the information and guidance on diagnosis and management that is contained in the new (October 2021) NICE guideline on ME/CFS and the 2023 DHSC Interim Delivery Plan on ME/CFS.
2021 NICE guideline on ME/CFS (NG 206):
2023 Department of Health and Social Care Interim Delivery Plan – currently under consultation:
Below are examples of some of the specific points that require revision or are omitted.
WHAT ARE CFS:
– The title should be What is ME/CFS?
– It is not accurate to describe a condition that affects at least 250,000 people, with many more cases now being reported as a result of Covid-19, as being rare.
– Extreme tiredness is a very unsatisfactory description for the debilitating activity induced fatigue that people experience. It is strongly disliked by the patient community and is not used in the NICE guideline.
-There is no mention of two key diagnostic symptoms: post-exertional malaise/symptom exacerbation and dysautonomia.
-Whilst ME/CFS is often a fluctuating condition, it is not correct to describe it as being a condition that ‘comes and goes'
WHAT ARE THE EFFECTS OF CFS?
This needs to reflect the information and guidance on the management of people with severe ME/CFS in both the NICE guideline and the DHSC Delivery Plan.
Education of children and young people with ME/CFS is a vital part of management – this cannot be left to just one short sentence:
‘School can be very difficult to cope with'.
HOW CAN I GET HELP?
This section should refer to the NICE guideline recommendation that ME/CFS should normally be diagnosed when 4 key diagnostic symptoms have been present for 3 months and are not explained by any other condition. The child or young person should then be referred to a paediatric specialist ME/CFS team (not to CAMS) to confirm the diagnosis and prepare a care and support plan.
TREATMENT FOR CFS
Stating that GET is a treatment option should be removed and replaced with information from NICE about appropriate forms of activity and energy management and pacing.
This section should also include information from the NICE guideline on safeguarding issues affecting children and young people.
The prognosis in children is certainly better than in adults and some children do return to full normal health. However, there is no research evidence to show that ‘the majority of severely affected children make a complete recovery'.
All of this information and guidance on ME/CFS therefore requires a very urgent review.
And the information regarding the use of GET should be removed as a matter of urgency.
The MEA has a consultant paediatric adviser, Dr Nigel Speight, and we would be very happy to help with the production of updated information.
A copy of this correspondence will be placed on the news section of the MEA website.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.