Action M.E leads the charge for better care in Scotland

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A new project which aims to raise awareness of the chronic illness ME among health professionals has been launched during ME Awareness Week.

Inform ME Scotland is a 12-month, Scottish Government-funded project that will allow Action for ME to lead change in Scotland by reaching out to health and social care professionals.

It also aims to engage them in discussions about how to improve the support available to people with ME.

Theresa Burns, project coordinator for Scotland, Action for ME, said: “The project has been set up in direct response to the needs of people with ME who aren’t really getting the support that they should.

“We also know that the professionals working with them need support.

“We want to provide professionals from across the health and social care sector with a better understanding of what living with ME is like, and create a space for shared learning and thinking about actions that can bring about meaningful change for people with ME.

“We know that services are lacking across the country at the moment and we hope that this goes some way to rectify that.”

The charity is also encouraging GPs, nurses and other healthcare professionals to get in touch as part of the project.

Theresa said: “We would love for GPs, nurses, physios, OTs, etc to speak with us about how they can take part. We can offer resources for surgeries so that information is readily available.”

Health Secretary Shona Robison said: “The Scottish Government is working to ensure that people living with ME get the best possible care and support and services.

“As part of this we’ve been working closely with Action for ME.

“I’m delighted that we’ve been able to provide funding for this important project and I look forward to seeing some positive outcomes for people with ME.”

Hannah Meikle (23), who has ME, believes the new project could make a big difference to sufferers.

She said:“Having ME can be quite isolating; it’s hard to get across exactly what you are going through and how you are feeling.

“You can have good days and bad days and a lot people can find it difficult to understand.

“It took a while for me to get a diagnosis which was a very difficult time. Even with a diagnosis from your doctor, it’s still not easy.

“Finding out what support is available is difficult especially when you are long term sick.

“Sometimes you’re too ill to do it for yourself, so having that support system readily available will go a long way to making a big difference for those who suffer from ME.”

Each day, there are scores of people across Scotland who face a gruelling battle to cope with everyday tasks.

A diagnosis of ME – myalgic encephalomyelitis – can leave many people completely housebound, dependent on family or professionals to help care for them, and feeling isolated and cut off.

May 7 to 13 is ME Awareness Week, so it is a fitting time to share this new project in Scotland, to support health and social care professionals to have a better understanding of what ME sufferers go through on a daily basis.

Based on evidence gathered from Health Boards, and the experiences of the people with ME that use specialist services for ME, Action for ME also plans to publish a report on healthcare services available for people with ME.

Following the general election which takes place in in June, the charity will use this to ask MSPs, NHS commissioners and primary care professionals what they are doing to ensure that appropriate, patient-led healthcare can be accessed by everyone with the disease.

Health and social care professionals in Scotland who’d like to know more about working with Action for M.E. should contact Theresa Burns by emailing