People still do not understand ME

Exhausted woman web

Theresa Burns, from Action for ME, says that people with the condition in Scotland still feel like they have nowhere to turn

TFN Guest's photo

14th May 2018 by TFN Guest 0 Comments

I have heard many stories about the way people with Myalgic Encephalomyelitis (ME) have been treated by some – though by no means all – professionals, who don’t understand the impact of this complex, neurological condition. Despite this, the stories still shock.

Last week, I sat among MSPs, professionals, patients and carers at our This is ME Scottish Parliament event, hosted by Gail Ross MSP. The upset was audible when Karen, whose daughter Alice has ME, described an early visit to the GP:

“The doctor decided to test Alice’s fatigue for herself, and told her to run around outside the building four times. She would watch from her window. Alice passed the window once, and did not reappear. She had collapsed, and was extremely upset.”

Karen went on to recall the physiotherapist who wouldn’t let Alice take a wheelchair to school, even though she still could not walk unsupported, and the paediatrician who accused Alice of not wanting to get better.

Theresa Burns, Action for ME

Theresa Burns, Action for ME

Alice remains severely ill, still living with this debilitating disease that affects around 20,000 people in Scotland, and is the biggest cause of long-term school absence.

Yet the Scottish Good Practice Statement on ME is clear about just how severe ME can be – and that exercise can cause harm. Why didn’t Alice’s GP, physio or paediatrician know this? While there are many professionals doing amazing work to improve the lives of people with ME – we heard from two of them at our event – there remains much to be done to support all health and care professionals in Scotland to better understand ME.

Along with more investment into biomedical research – building on our PHD funding partnership with the Scottish Government chief scientist office – we want to see improved access to professional training and education on ME. An accredited course, supported by NHS Education for Scotland, must be developed not just by health professionals but also patients, whose views and experiences are essential in getting this right.

We also want to see the appointment of a clinical lead for ME, heading up a managed clinician’s network.  This would create an opportunity for health care professionals to come together and share good practice, the likes of which we heard about at our event from Keith Anderson, who works in NHS Fife and is Scotland’s only specialist ME nurse – making him rarer than a panda – and Katie Davies, an occupational therapist in NHS Grampian.

Katie is just one of the many professionals determined to learn more about ME. She described using her own money – and Tesco Clubcard vouchers for flights – to pay for training and development from an experienced occupational therapist who specialises in ME, in Yorkshire.

ME affects more people than MS and Parkinson’s disease combined, so how can it be right that patients and professionals feel they have nowhere to turn in Scotland for expert support and advice?

By working with other organisations and the MSPs who came to our event, led by the voices and experiences of people affected by ME, I believe we can change this for parents like Karen, and professionals like Katie. If you believe that too, please get in touch.

Theresa Burns is the project coordinator in Scotland for Action for ME, which works collaboratively to improve the lives of people with the condition