More research and clinical trials, new clinical guidance and better care planning are all needed for people living with ME, according to a new report based on the insights of people affected by the condition.

People with Myalgic Encephalomyelitis (ME) told Healthcare Improvement Scotland’s ‘Gathering Views’ exercise that they should be given immediate, uniform access to specialist services.

Researchers heard that some people with ME had positive experiences of diagnosis, compassionate support and ongoing care.

However, other respondents said they experienced lengthy delays in diagnosis, unnecessary tests, and a lack of information about the condition - as well as simply not being believed.

“It alone feels great when a GP, nurse etc. actually believes in what I am saying and that I have a real condition even if they cannot assist,” one said.

“It took me 10 years to receive my diagnosis as health professionals did not believe ME to be a real condition.”

Others said they felt isolated and reported they were left to get on with managing their condition with limited input or support.

ME has a wide range of symptoms with the most common being extreme tiredness. Its cause remains unclear but the case for it being triggered by infection has been strengthened by the parallels in how it affects patients with what is endured by people with Long Covid.

The Scottish government commissioned the Gathering Views report, which asked a total of 561 people across Scotland how their lives are impacted by the condition.

The report recommends developing new clinical guidance to support diagnosis and treatment. Further recommendations include more research and clinical trials and better care planning.

Ruth Jays, Healthcare Improvement Scotland’s Director of Community Engagement says the Gathering Views process will inform approaches and services:

“Hearing from people living with ME in Scotland and their experiences is crucial to improving the care they need.

“This Gathering Views report provides recommendations which, if implemented, will see the quality of many people’s lives improve.

“The responses we received have been submitted to the Scottish government to help shape their work to establish what good care and support for people with ME looks like.”

The Gathering Views exercise was undertaken during February and March 2020 in all 14 NHS board areas in Scotland, using discussion groups as well as an online survey.

Read more: ME expertise helping long covid patients

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