NICE draft ME/CFS guideline advice on diagnosis


The draft NICE guideline is open for consultation until December 22nd 2020.

Contact the helpline or use the contact form on this website with your comments for inclusion in the WAMES response.

You can read the draft guideline here

Read excerpts from the guideline here on our blog. Today we highlight what the draft guideline tells doctors about how they should advise people with suspected ME/CFS and how, and when,  they should diagnose:

1.3 Advice for people with suspected ME/CFS (p10)

1.3.1 When ME/CFS is suspected, give people personalised advice about managing their symptoms. Also advise them:

  • not to use more energy than they perceive they have − they should plan their daily activity to stay within their energy envelope and not push through activity
  • to rest as they need to
  • to maintain a healthy balanced diet, with adequate fluid intake.

1.3.2 Explain to people with suspected ME/CFS that their diagnosis can only be confirmed after 3 months of persistent symptoms. Reassure them that they can return for a review if they develop new or worsened symptoms, and ensure they know who to contact for advice.

Why the committee made the recommendations (p51)
There was limited clinical evidence on management strategies for people with suspected ME/CFS. The qualitative evidence and the committee’s experience suggested that managing symptoms early may prevent them getting worse and the person’s health deteriorating. To reflect this, the committee made a recommendation to give people advice on symptom management drawn from their own knowledge and experience.

The qualitative evidence suggested this can be an anxious time for people with suspected ME/CFS and the committee agreed it was important for people to know who to contact if their symptoms change.

How the recommendations might affect practice
Providing the advice in these recommendations would not impose a significant cost on the NHS. If this advice leads to fewer people with deteriorating symptoms, the recommendations would be highly cost effective.

1.4 Diagnosis  (p11)

Making a diagnosis
1.4.1 Diagnose ME/CFS in a child, young person or adult who has the 6 symptoms in recommendation 1.2.3 [page 8 of the guideline] that have persisted for 3 months.

1.4.2 After a diagnosis, refer adults directly to a specialist team experienced in managing ME/CFS to develop a management plan.

1.4.3 If ME/CFS is diagnosed in a child or young person after assessment by a paediatrician (based on the criteria in recommendation in 1.2.3), refer them directly to a paediatric specialist team experienced in ME/CFS to develop a management plan.

Why the committee made the recommendations (p51)

Making a diagnosis
The committee agreed that although a 6-month delay before diagnosis is built into the Institute of Medicine criteria, the criteria could be safely amended by reducing this period to 3 months. The committee saw removing this delay as useful because it might enable earlier management and could potentially improve longer-term outcomes.

Reflecting the common theme across the evidence about a lack of knowledge of ME/CFS and evidence that non-specialists in ME/CFS are not confident about diagnosing and managing ME/CFS, the committee recommended referring people with ME/CFS to a ME/CFS specialist team at 3 months to confirm their diagnosis and develop a management plan.

Diagnostic criteria
The committee made a recommendation for key symptoms based on the evidence review of the current diagnostic criteria but no one criteria was agreed to be better overall. There is an ongoing discussion in the ME/CFS community about which diagnostic criteria are best and which should be used in the identification and diagnosis of ME/CFS.

The factors influencing these discussions are the broadness of the inclusion criteria, the definition of some of the symptoms, and the usability of the criteria as a clinical tool. There are concerns that many of the existing criteria do not accurately identify people with or without ME/CFS. Currently there is no validated diagnostic criteria for ME/CFS, and this leads to confusion about which criteria to use. The committee agreed to make a  recommendation for research on diagnostic criteria to inform future guidance.

Diagnostic tests
No evidence was identified for any tests or specific signs and symptoms as predictors of a later diagnosis of ME/CFS. Accurate diagnostic tests that correctly identify ME/CFS will support healthcare professionals to identify people who have ME/CFS and rule out those who do not. The committee decided to make a recommendation for research on diagnostic tests to help identify effective diagnostic tests for ME/CFS that will facilitate early diagnosis and potentially lead to better outcomes for people with ME/CFS. They hoped this research would inform future guidance.

How the recommendations might affect practice
There will be no change to the current practice of diagnosing ME/CFS based on clinical assessment and history and performing tests for differential diagnoses as appropriate.

The duration of symptoms before diagnosis can take place has been reduced but the criteria are now stricter, requiring that 4 different sets of symptoms are all present in order to suspect ME/CFS. The impact therefore will not necessarily be an increase in
referrals but for people to receive their diagnosis earlier, which will bring forward their assessment and care plan. Earlier access to appropriate advice and care could prevent disease progression and therefore reduce resource use in the longer term.

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