Update: 03 August: The website page containing the outdated information about ME/CFS (see letter below) appears to have been withdrawn. We are waiting to hear from the ‘Recovery College' and will share any communication once we do.
On 02 August, the ME Association wrote to request a rewrite of the ‘Recovery College's' online educational material in light of the 2021 NICE Clinical Guideline on ME/CFS.
Dear Recovery College,
Re: online educational information and advice on ME/CFS
As it is now 9 months since publication of the new NICE guideline on ME/CFS, the ME Association is reviewing the content of all sources of NHS information and advice on ME/CFS to check that this is consistent with the information and recommendations in the new guideline.
Having gone through the information and advice on your website, which was presumably produced before the new guideline appeared in October 2021, it requires urgent replacement – as it contains a number of statements that are inaccurate, out of date and even potentially harmful (i.e. stating that GET is a treatment for ME/CFS when the new NICE guideline states that GET should not be offered to people with ME/CFS).
Rather than going through all the information and advice that needs updating I will highlight key areas where changes need to be made:
The new NICE guideline now refers to ME/CFS (rather than CFS/ME) and describes ME/CFS as a complex, chronic medical condition affecting multiple organ systems with a pathophysiology that is still being investigated.
The guideline committee (I was a member) did not find any evidence to indicate that ME/CFS could be caused by mental health problems (depression, anxiety).
ME/CFS also affects children and young people – where it is one of the commonest causes of long term sickness absence from school.
The new NICE guideline sets out a list of four core diagnostic symptoms which are based on the Institute on Medicine diagnostic criteria – along with a list of other common symptoms.
This should be reflected in the information on symptoms that you provide.
The NICE guideline does not use the term ‘extreme tiredness' – as this is not a good description of the activity induced fatigue that occurs in ME/CFS and is strongly disliked by the ME patient community.
This should be based on the above four core symptoms along with a comprehensive clinical assessment to exclude other conditions which can cause ME/CFS like symptoms.
This assessment should include a number of baseline investigations (all listed by NICE). Baseline blood tests are not an optional extra.
Once a diagnosis has been confirmed in primary care, normally 3 months from the onset of symptoms, people with ME/CFS (adults and children) should then be referred to a specialist service and team where the diagnosis can be confirmed (as there is a high rate of misdiagnosis in primary care) and an individual management and care plan agreed.
As there is no treatment for the underlying condition, management is a preferable term to treatment.
The key aspects of ME/CFS management are activity and energy management (ie pacing) along with symptom control (ie for pain, nausea, sleep, dysautonomia etc).
The use of CBT has been downgraded in the new guideline to a possible option for helping people cope with the illness.
GET should no longer be offered or provided. The guideline committee concluded that the evidence for efficacy for GET was very weak. There was also substantial evidence of harm.
The new guideline pays special attention to care and management of children and people with severe and very severe ME/CFS. This should be reflected in your information – which makes no reference to severe and very severe ME/CFS, or to children with ME/CFS.
Most people with ME/CFS tend to stabilise (with fluctuations) at a significantly lower level of physical and mental functioning.
Full and sustained recovery is, sadly, unusual in adults but is more common in children and young people.
Around 25% become severely or very severely affected.
We would be grateful if you could let us know what action will now be taken.
The MEA is always happy to help with making education information on ME/CFS accurate and helpful.
Dr Charles Shepherd
Trustee and Honorary Medical Adviser
(Member of The NICE Guideline Committee on ME/CFS (2019 – 2021) and The DHSC Research Working Group (2022-23)