Proposed UK Government Statement on ME

Myalgic encephalomyelitis (ME) frequently attracts a stigma that is allowed to be perpetuated by prolonged and repeated ignorance, apathy and misinformation about the disease.

While preparing a response to the Department of Health and Social Care/UKCRC Interim Plan for ME/CFS Report (click here for our response) we thought it would be useful to clarify for all.
So what better way than to use the government's own wording on their web site to create the following description of ME for all to see?
It may help clarify the situation in some minds and hopefully re-educate those who may hold false beliefs about the disease.

Statement on Myalgic Encephalomyelitis

ME/CFS is a long-term health condition that remains poorly understood, despite affecting an estimated 241,000 children and adults in England.
It is a complex, multi-system, chronic medical condition.
It is not clear what causes ME/CFS.
In many cases, symptoms are thought to have been triggered by infection, but it is not simple post-illness fatigue - it lasts longer, and even minimal mental or physical activity can make symptoms worse.

According to the National Institute for Health and Care Excellence (NICE) guideline on ME/CFS (NG206), the 4 symptoms essential for a diagnosis of ME/CFS are:

  • debilitating fatigue that is worsened by activity, which is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest
  • post-exertional malaise after activity in which the worsening of symptoms is often delayed in onset by hours or days, is disproportionate to the activity and has a prolonged recovery time that may last hours, days, weeks or longer
  • unrefreshing sleep or sleep disturbance (or both), which may include feeling exhausted, feeling flu-like and stiff on waking, broken or shallow sleep, altered sleep pattern or hypersomnia
  • cognitive difficulties (sometimes described as ‘brain fog’), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multi-tasking

Other common symptoms may include severe pain, sensitivity to heightened sensory stimulation, postural orthostatic tachycardia syndrome (POTS) and gastrointestinal problems.
Symptoms can fluctuate in severity and over time, particularly for people who are affected at a mild or moderate level.
It is estimated that 1 in 4 adults diagnosed with ME/CFS are so severely affected that they are house-bound or bed-bound, with little functional capacity, needing 24-hour care.
This can last for months or years. In rare cases, the outcome has been fatal.

The UK government recognises this and disassociates itself from flawed ideological theories that have been allowed to perpetuate due to apathy, ignorance and a lack of public funding for biomedical research into the disease.

Adapted from Introduction: My full reality: the interim delivery plan on ME/CFS




Last Update September 2023