‘We’re not lazy – Chronic Fatigue Syndrome is a real disease after all’ | Bolton News | 19 February 2015

From the Bolton News | 15 February 2015 | Words by Vickie Scullard.

AFTER decades of being branded ‘lazy’ and ‘over tired’, sufferers of chronic fatigue syndrome (CFS) have finally been told what they knew all along — that it is a ‘real’ and ‘serious’ disease.

Just last week doctors and influential government advisers in America said the name should be changed and that there should be a better way to diagnose the illness, with Institute of Medicine chair Dr Ellen Wright saying: “This is not a figment of their imagination.. These patients have real symptoms. They deserve real care.”

The new choice of name is Systemic Exertion Intolerance Disease (SEID), which reflects the fact that exertion can wipe patients out.

Catherine Higson, aged 29, has had ME since she was 15-years-old and is a group leader at Bolton ME/CFS Support Group along with her husband Steve, aged 42, who also has the condition.

Her life is consumed with the illness so much so that having a shower can exhaust her for hours, and therefore she cannot work and has chosen not to have children for fear of not being able to cope with the demands of being a mother.

She is hopeful that the UK will follow suit with the recommendations in the future.

Mrs Higson, from Harwood, said: “These are proposals for America but it’s good that it’s prompted us to talk about it over here, and hopefully we will do the same. I do think it needs a new name because ‘chronic fatigue’ does not reflect how you feel. But SEID is quite confusing.

“It consumes your life because you never know how you will be from day to day. When I was younger I thought I’d work in business and maybe have a family, but I can’t work and will not be able to have children, because there is no way that I could cope with night feeds and nappy changes when I struggle to get out of my own pyjamas some days.”

The NHS describes chronic fatigue syndrome (CFS) as causing persistent fatigue, or exhaustion, which affects everyday life and does not go away with sleep or rest.

The condition is also known as ME, or myalgic encephalomyelitis, meaning muscle pain and inflammation of the brain and spinal cord.

Mrs Higson said: “People who don’t have it really don’t understand what being tired is. I need a rest after having a shower. Because there is nothing that people can see, like a bandage or plaster cast, people just think it’s not real or sufferers are just tired and lazy. But it’s not the case — people are often high achievers. We don’t lack motivation, we lack stamina.

“ME doesn’t have a diagnosis, it is a diagnosis of exclusion, so schools don’t really understand it, despite it being the biggest cause of long term absence. I had to do my GCSEs over two years and my A Levels online because I couldn’t make it in on so many occasions.

“For me it started when I was 15, during the six week holiday at school I got really bad pain in my body from nowhere. I had some scans done and was told I had growing pains. But I was getting more and more tired and missing more and more school and after six months I was diagnosed with ME, which is commonly called CFS now.

“Sometimes genetics have a part to play – my husband’s mum has it, as does he. Some people have other health problems associated with it, like I have osteoporosis, and 20 per cent of people have hypertension, meaning their blood pressure drops and they can get dizzy. I even passed out on my honeymoon.”

Despite it being a difficult condition to manage, when she can Mrs Higson helps other people in Bolton at the support group — which is where she met her husband.

Mrs Higson said: “I have been in the group for years. We have five committee members and 155 members. It’s really good because it breaks the isolation and we can learn through others’ experiences.

“It can be hard because if you’re in bed three days a week it can be hard to keep friends and maintain a relationship, which is why I feel so lucky to have met my husband Steven.

“We met at my first social with the group, got engaged a few months later and eloped to Edinburgh when I was 17 because we wouldn’t have been able to cope with a big day. We wanted to do it by ourselves, which we did, and we don’t regret it one bit.”

Mrs Higson thinks that the public perception of ME/CFS has changed, but believes that more could be done to help people who live with the condition.

She said: “I think more people understand about ME now. When I was first diagnosed there wasn’t much information but there is much more now, and some doctors’ attitudes are better due to the research that is being put into it.

“In Bolton there is a clinic in Breightmet health centre which is brilliant. People can have access to occupational therapy, a counsellor — there’s a wonderful team that works there.

“One thing that would help I think is Skype appointments with doctors. Some people are unable to get to their GP if they are bedridden and many surgeries only do emergency appointments if you ring in the morning.

“There is good support in Bolton though, and I would urge anyone who has ME to get in touch when they can.”

Dr Wirin Bhatiani, Chair of NHS Bolton Clinical Commissioning Group, said: “In the UK, the Department of Health classifies Chronic Fatigue Syndrome as a neurological condition and we have specific guidelines from the National Institute of Clinical Excellence (NICE) for its diagnosis and management.

“This condition can be difficult to manage as there is no specific cure. Treatments are focused on managing symptoms and lifestyle measures. This condition can have significant impacts on individuals and can limit their activities. Bolton GPs offer telephone consultations and can schedule home visits for patients who urgently need to see a GP but are unable to attend the surgery.

“NHS Bolton Clinical Commissioning Group is investing £3.4m in the borough’s GP practices. Improving access for everyone will be a significant part of these changes. I encourage anyone who is experiencing access difficulties due to a specific health problem or disability to discuss this with their practice.”

For information about our group, call Caroline on 01204 525 955, email caroline@mesupportgroup.co.uk, or visit mesupportgroup.co.uk.