People with ME have a unique illness and experience of ME. Many are able to recover and lead fulfilling lives – others may remain severely affected for years.
A key issue is that the disease is misunderstood, and GPs are often not trained to recognise and treat it. In addition, there is no specific test and patients have to be referred by their GP to specialists in order to get the correct diagnosis.
In the US, a doctor can diagnose ME using the following criteria: substantial impairment in activity that lasts six months or more, unrefreshing sleep, post-exertional malaise (PEM), and either cognitive impairment or orthostatic intolerance. This is based on the 2015 criteria set by the National Academy of Medicine. There are also sub-groups of the condition that experts have recognised on the basis of illness history, symptom clusters or course of the disease over time.
The main symptom of ME is extreme fatigue and this can be the most debilitating symptom. It is like being constantly on a low battery, or never getting fully charged – it can affect every aspect of life and cause significant functional disability.
Other symptoms include unrefreshing sleep, problems with memory and concentration, headaches, sore joints and muscles, pain in the head, neck and throat, and a general feeling of being not well. These can make it very difficult to work, study or socialise.
It is not known what causes ME, but it is thought that it can be triggered by infection, including viral infections such as long Covid, and in some cases by immunisations. In a small number of cases, the illness is triggered by a physical trauma such as an accident or operation or after a chemical exposure.
There is no cure for ME, but the symptoms can be managed and the quality of life improved with the right care. Research into the cause of ME continues with studies such as the DecodeME project which aims to identify potential triggers, and a potential treatment.
Despite these challenges, the UK’s best ME charities are doing amazing work. However, we need your help to continue this work and fund the vital research needed for a better future.
Solve ME is calling for a new generation of GPs to be trained in ME, so that it can be diagnosed quickly and properly. We need local ME specialist services that are clinically led, and regional centres for the most severe cases. People with severe ME also need home visits and access to social care. A campaign called #ThereForME is demanding these reforms.