Imagine after weeks of feeling unwell – to the extent that it was having a massive impact on your life – being told that you probably had a condition that can’t be properly diagnosed or cured.
How would you feel? Alone. Depressed. Confused.
Probably a mixture of all these and more, but that’s a situation people who have myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), face on a daily basis.
It’s more than being tired or run down. It’s when your body is so fatigued and your muscles ache so much that you cannot get out of bed ... often for days on end.
Around 20,000 Scots are estimated to have the debilitating condition and a further 230,000 across the UK. This equates to one in every 250 people being sufferers. It affects all ages: children, teenagers, adults and the elderly can all be struck down by ME.
The prevalence rises to one in 100 young people aged 11-16 and ME has been identified as the biggest cause of long-term school absence.
For the last 16 years a support group has been offering help, advice and the comforting knowledge that sufferers in Falkirk are not alone.
It currently has around 20 members, but it is rare that they are all well enough to attend meetings which take place on the second Thursday in the month in St Francis Xavier Church Hall in the town’s Hope Street, next to Falkirk Library.
Falkirk ME Self-Help (MESH) Group meets from 6.30-8.30 p.m. and, as well as helping those attending to realise others have the same condition, they regularly have speakers, often alternative therapists who talk about how their work can provide some relief for some sufferers.
There is also an active Facebook page keeping people, particularly those who are unable to attend meetings, up-to-date with what is happening.
One group member, who has been afflicted by the condition for more than 30 years, described how some days she could only get downstairs by bumping down on her behind, and crawling back up on her hands and knees.
Another said: “To describe how ME makes you feel, imaging getting up after a night on the tiles with a bad hangover and feeling like you were coming down with flu – and being forced to run a marathon. It’s that bad.”
Janette Davis (55), who is the group’s acting secretary, said: “I feel guilty some times about not being able to do anything. I feel really lazy but I know that if I was to push myself too far then I would suffer later.
“You can’t make plans as you never know how you are going to feel. When you phone up to cancel arrangements, people say ‘oh come along, you’ll feel better when you get here’ – but you know that you won’t. In fact, you will feel worse.”
Chairman Richard Zak (57), of Grangemouth, first became ill in 2000 but it was 18 months before he was eventually diagnosed and then it was only thanks to being sent to the infectious disease department in Edinburgh’s Western General Hospital.
He said: “There is no clinical diagnosis, it’s more a case of excluding other things. No-one knows why you get it either although a range of factors are thought to contribute to some people developing it, including viral infections such as glandular fever, mental stress, depression and traumatic events such as a bereavement, divorce or redundancy.
“However, it does seem to often affect those you would class as ‘doers’, achievers who are always on the go. And when you have been like that imagine how difficult it is to cope with.
“Although a few people will start to improve after two years, there is always the risk of relapse, and unfortunately, for many, things don’t get better. You have bad days and slightly better days.”
Chronic fatigue is not the only symptom, although it is the most obvious, and sufferers can also have cognitive difficulties such as poor concentration and poor memory; sleeping difficulties; muscular pains and headaches; sore throats; and dizziness and palpitations.
Although there is no cure, currently the only hope for those struck down is that they can learn to manage their symptoms. Members of Falkirk MESH agreed this was best achieved by ‘listening’ to your body and on days when symptoms were at their worst, accepting there was little physical activity they could do.
Richard added: “However, it doesn’t just affect the person with the condition but it affects the whole family and for some, it can cause problems. You have to learn to adjust your life.”
For him that eventually meant having to give up his work as an instrument technician with BP Oils.
He said: “You wake up every day and don’t know what to expect. You can’t plan ahead because you may have to cancel. It’s difficult to say no to things but you have to do it because you know that you could end up causing yourself more harm.”
Next week has been designated to highlight ME and this Monday is ME Awareness Day. Michael Matheson, Falkirk West MSP and the Minister for Public Health is coming to speak to the group’s members from 2-3 p.m. to hear more about the difficulties they encounter.
One of the areas of concern is getting doctors to listen to their symptoms and to get a diagnosis with one member describing it as “hellish”. There is no consultant specialising in the condition in Scotland with NHS Fife the only health board to have a specialist nurse trained to deal with ME.
One member said: “It can be heartbreaking when someone new walks through the door expecting to find the magic bullet. You don’t want to tell them it remains elusive.”