Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management – draft guideline

This DRAFT guideline covers diagnosing and managing this syndrome in children, young people and adults and also includes recommendations on assessment and care planning, safeguarding, access to care and symptom management.

SPS commentary:

Overall, it was noted that the evidence for pharmacological interventions is limited and most was of low to very low quality. There was little evidence for most of the interventions identified and little evidence of clinical benefit and some evidence of harm. After discussing the clinical effectiveness of pharmacological interventions and people’s experiences and considering the reports from the young people and people with severe ME/CFS, the committee agreed there is no current pharmacological treatment or cure for ME/CFS. The committee discussed the claims that have been made about cures for people with ME/CFS and lack of evidence for this. They were aware of interventions that are promoted as cures and there is often a financial cost to people with ME/CFS when these are pursued. To address this, the committee made a recommendation to raise awareness that there is no current pharmacological treatment of cure for people with ME/CFS. In addition, the committee made a clear recommendation not to offer any medicines or supplements to treat or cure ME/CFS. The committee acknowledged that while there are not any current pharmacological treatments or cures for ME/CFS, people with ME/CFS have found some drugs when used appropriately with advice and support from health care professionals can be helpful in managing the symptoms of ME/CFS and they could be discussed on an individual basis.

Source:

National Institute for Health and Care Excellence

Resource links:

Link to support evidence