Fifers suffering from chronic fatigue syndrome have called for more specialist services after some struggled to get a diagnosis and treatment for the condition.
Stella Larg is one of many living with the condition, which is also known as Myalgic encephalomyelitis (ME).
The 71-year-old from Tayport spent years trying to get a diagnosis and support because there are no specialist services available to help.
There had only been one specialist ME nurse in Scotland, Keith Anderson.
He offered support for people with ME from his clinic in Ladybank, Fife.
But following his death at the end of last year, there has been no one to take over his unique role.
Stella’s symptoms started very suddenly in March 2020.
She just woke up one morning and felt something heavy was ‘lying on her chest’ and within a week, she couldn’t walk to the front door.
“When it started I was just so exhausted. I ended up being bed-bound for a year and a half and I didn’t have the energy to eat.
“I also had headaches and muscle pain.
“My doctor sent me for every kind of test there was.
“I had lots of tests at the hospital, but nothing was coming up because nothing shows that you have ME.
“I contacted my doctor at least 30 or 40 times but he just didn’t know what it was.”
She added: “I ended up doing my own research, reading books and articles on the Internet and all my symptoms pointed to ME.
“I ended up having to diagnose myself because there was no-one else to do it.”
Being referred to the Fife ME specialist
After two years Stella’s doctor referred her to the ME specialist in Fife.
She explained: “Within five minutes of speaking to Keith, he said with everything you have described, you definitely have ME. There is no doubt about it.
“Keith was amazing and he suggested doing ‘pacing’ – this meant doing an activity for five minutes then stopping for 15 minutes and then repeating this. I found this helped.”
She said having an ME specialist is crucial.
“His role is invaluable. Just to hear someone say this is what you have is everything because you get doctors who think you are just making it up.
“Just having someone who understand how you are feeling and can offer support makes the world of difference.
“But we need more than just one specialist too because Keith was run off his feet all the time.
“He always had time for you, but he was working beyond his capacity because he was the only specialist in Scotland.”
‘I can’t get an official diagnosis’
Meanwhile another 57-year-old woman in North East Fife, who has had ME for the past eight years but who doesn’t want to be named, can’t get an official diagnosis because there is no specialist available to do it.
She said: “I have been to a number of doctors multiple times and had multiple tests done but I still don’t have a diagnosis.
“I was referred to the ME specialist in Fife with a view to getting a diagnosis but the referral was turned down because the specialist was off ill.
“Then I was referred to the pain clinic but this was also turned down because they didn’t have the resource to see me.
“And it was the same when I was referred to a neurological service – it also didn’t have the resource.
“There is no-one I can be referred to, in order to get a diagnosis, so I can’t be prescribed any medication or start a treatment plan.
“I can’t move forward in any way shape or form.”
She continued: “The fact there are no ME specialists is a disgrace.
“It is ridiculous that I was referred to three services but there is no space available with any of them.
“The earlier you can get a diagnosis, the sooner you get the right treatment and the less likely it is your condition will deteriorate to the point where you will need more resources to manage it.
“I am told there is no-one I can be referred to, so what do I do now?”
No ME specialist in Scotland
Another ME sufferer said she couldn’t believe it when she was told there was no ME nurse in Scotland.
The 52-year-old said: “To have only one nurse for the whole of Scotland who practices in a small geographical area and has now unfortunately passed away, is really poor service planning.
“Everyone gets sick and illnesses can come out of nowhere so why wasn’t his position back-filled by someone else?
“Why wasn’t someone brought in to cover him or trained up to do Mr Anderson’s job?
“That didn’t happen and it still hasn’t happened. There is still no-one fulfilling the role.”
‘Our priority must be the recruitment of specialists’
Wendy Chamberlain, MP for North East Fife, said the passing of Fife-based specialist Keith Anderson is a great loss to the CFS/ME community.
She said his work must be continued to provide better care for patients.
Ms Chamberlain continued: “It is absolutely shocking that there are no longer any specialist services for ME and chronic fatigue syndrome in Scotland.
“Our first priority must be the recruitment of new specialists.
“I have been meeting with constituents about the difficulties they are facing with diagnosis and treatment: now almost impossible in Scotland.”
A spokesperson from the Fife Health and Social Care Partnership said the ME/CFS service provided a valuable service for Fifers with the debilitation condition.
She said the service was put on hold following Mr Anderson’s passing.
“The service was paused because there is no suitably experienced specialist nurse in ME/CFS to provide cover, with the provision in Fife having been the only such service in Scotland.
Plans to recruit a new specialist nurse in Fife
“New temporary arrangements were put in place to enable GPs to refer patients with ME/CFS to other services for those with long-term conditions, mirroring the provision available in all other Health Boards in Scotland.
The spokesperson said there are plans to recruit a new specialist nurse, adding: “There continues to be a shortage of specialist ME/CFS trained health professionals across the UK.
“Despite this, it remains our intention to recruit an appropriately trained specialist nurse to continue the excellent work initiated by our previous specialist nurse.
“It is not our intention to close the service and we aim to restart provision as soon as practically possible. ”
According to figures from the Scottish Government, it is understood around 20,000 people across Scotland may be affected by ME/CFS.
A Scottish Government spokesperson added: “Service provision is the responsibility of NHS boards and we expect all boards to provide care that is person-centred, effective and safe.