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The NICE guidelines for ME/CFS recommend referral to a specialist ME/CFS Service when patients are experiencing all 4 key ME/CFS symptoms, for a minimum of 3 months. The appropriate investigations must show that these symptoms cannot be explained by another condition, excessive working hours or ongoing exertion.
The treatment pathway is delivered as follows:
Following the release of the updated NICE guidelines NG206, the criteria for diagnosis and considering a referral to a specialist ME/CFS service is now more stringent. Patients should only be referred if they are experiencing all 4 symptoms outlined below, for 3 months or more. The symptoms are as follows:
ME/CFS should be suspected, if a patient has had all of the 4 key symptoms persisting for a minimum of 6 weeks. However, a diagnosis of ME/CFS can only be made when a patient has had all 4 key symptoms, persisting for a minimum of 3 months or more, and the symptoms should be:
In many cases, a diagnosis of ME/CFS can be made confidently in primary care. However, it is important to know that there is currently no diagnostic test for ME/CFS and it is recognised on clinical grounds alone, when all other causes for the debilitating fatigue and other symptoms have been excluded. In order to do this, it is recommended that people undergo thorough medical assessment by their GP first, including blood tests, prior to being assessed for ME/CFS. Please see the updated NICE guidelines (NG206) for a full list of suggested tests to be carried out prior to referral.
Be aware that the following symptoms may also be associated with, but are not exclusive to, ME/CFS:
The following conditions would Exclude a diagnosis of ME/CFS and should be screened prior to referral:
“In many cases, a diagnosis of ME/CFS can be made confidently in primary care.
Advice for people with suspected ME/CFS
When ME/CFS is suspected, give people personalised advice about managing their symptoms. Also advise them:
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 before that if they develop new or worsened symptoms and ensure that they know who to contact for advice.
The NICE guidelines state that it is essential that the 4 key symptoms are all present as stated in the Assessment section above.
Referrals submitted without this information may be returned.
Refer using the e-Referral Service
Chronic Fatigue/ME referral form - No merge fields
Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. NICE clinical guidelines (NG206). October 2021.
This guideline has been signed off on behalf of NHS Devon.
Publication date: January 2018
Updated: August 2023