Chronic fatigue: NICE guidelines
Myalgic encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS) is a complex, chronic medical condition that we still don’t fully understand and whose sufferers often face stigma and disbelief . A timely and accurate diagnosis is desirable but there is currently no diagnostic test. All the following symptoms must be present to suspect ME/CFS:
· Debilitating fatigue
· Delayed and disproportionate fatigue after exercise with a prolonged recovery time
· Unrefreshing sleep and abnormal sleep patterns
· Cognitive problems/” brain fog”
This diagram refers to additional possible symptoms to be aware of .
The NICE guidelines as of October 2021 recommend the following steps in the case of suspected chronic fatigue: GPs would be recommended to carry out a medical assessment, a physical examination, assessment of the impact of the symptoms on the patient’s life and investigations to rule out other conditions. If ME/CFS is still suspected your GP may refer you to a specialist team needed for a diagnosis.
Where ME/CFS is diagnosed the NICE guidelines recommend the first step should be to inform the patient about their condition and how it’s impacts and long term outlook can vary wildly, and also the care/support services they can access. Health professionals may liaise on the patients behalf with employers, education providers and support services.
Energy management (that is, patients managing their activity to stay within their energy limit) is a key part of ME/CFS treatment . The patient may work with the specialist team to determine an appropriate level of physical activity and exercise and help the patient set realistic goals and plans for their days from that information. “Graded exercise therapy” is sometimes used to set a baseline of achievable activity and then slowly increase it while being wary of setting off flare-ups. Regular sleep and rest periods are crucial to restoring energy and the patient should be advised about this along with relaxation techniques .
The NICE guidelines also recommend that CBT therapy should be explained and provided as an option to chronic fatigue patients as it has been shown to help some manage their symptoms (but is not a cure). It should include building a shared understanding about how the symptoms effect their life, the personal meaning of those symptoms, developing a self-management plan and strategies. These are reviewed regularly as symptoms change and finally collaborating on a therapy blueprint at the end of therapy. CBT for a person with ME/CFS might include shorter, less frequent sessions and longer-term goals due to the nature of the condition .
The phenomenon of “long covid” has been compared to chronic fatigue and it is possible that the same techniques may be of use to sufferers but it’s important to understand this is not the same condition as ME/CFS and is also not well understood so treatment for the two should not be considered interchangeable .
Ultimately chronic fatigue does not present the same way in any two people and it’s important to tailor treatment plans to the individual. More in depth explanation of what has been summarised here is available at the NICE guidelines link in the references .