Tired of explaining: the experiences of people with Chronic Fatigue Syndrome

When Healthwatch Trafford spoke to people with ME and CFS, they found that over 76% felt their GP didn’t understand their condition. Find out how they think support could be improved.
A woman rubbing the back of her neck

It’s estimated that around 250,000 people in Britain are affected by conditions like Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS).The condition causes tiredness and fatigue that doesn’t go away with sleep or rest.

It can often leave people housebound or confined to bed for months or years, so not getting the right support can be detrimental to their wellbeing.

Healthwatch Trafford wanted to find out about people’s experiences of being diagnosed with these conditions and the support they then received from health services. They spoke to over 1,000 people with ME and CFS to find out what worked for them and what could be improved.

Three ways to help improve care

1. GPs need better training

76% of people felt their GP was not knowledgeable about ME and CFS. Many felt that better training would help GPs understand the condition and how to refer people to specialist services for support.

2. People want to be treated more quickly

The report found that in Greater Manchester, 68% of people had to wait for over a year to receive a diagnosis. A quarter waited more than five years. Living with the condition can make it difficult for people to go to work or school, so it’s vital that they are diagnosed as soon as possible.

3. Clear information for everyone

Healthwatch Trafford found significant variation in the availability and quality of information that people are given about ME and CFS. Over a third of people said they had not received any information, and many of those that were given information said it had not been useful. People want clear information, that is easily accessible, to help them understand more about lifestyle changes and treatment.

Raising awareness

The views people told their local Healthwatch have already been shared with over 70 health and care organisations to raise awareness about the needs of those living with ME and CFS.

This report highlights some of the very real issues that people with ME and CFS face on a daily basis, from initial diagnosis through to living with the condition for many years. The report shows that there are multiple issues to be addressed and that whilst our focus is on patients within Trafford, the high response rate to our survey shows that these are nationwide problems that cannot not be ignored.
— Andrew Latham, Chief Officer of Healthwatch Trafford

Healthwatch Trafford is also using the findings to help those who run local services look at how care can be improved and, as a result of this research, other local Healthwatch are also looking at the issue.  

For more information, take a look at Healthwatch Trafford’s published findings.

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