ME Syndrome: the invisible disease that no one is talking about

27 March 2019

Photograph: Unsplash

A cure is yet to be found

ME (myalgic encephalomyelitis) or commonly referred to as Chronic Fatigue Syndrome (CFS) affects an estimated 250,000 people in Britain, yet there is still a lot of stigma and a lack of information surrounding the disease.

ME is characterised as being a constant fatigue that won’t go away with normal rest. The effects of ME can lead many sufferers to think that their symptoms are the result of a viral infection. There is a long list of symptoms which include:

Infographic: Emma Lawson

“ME/CFS is a fluctuating condition – meaning that the symptoms vary throughout the day and from day to day and week to week.” The ME Association states.

ME/CFS can affect anyone – from adults to children. It is not known what causes the illness – evidence has suggested that it may be genetic, as it tends to affect more than one family member. It is also thought that the illness is due to abnormalities in the immune and endocrine systems, but this has not been proven. ME is also very difficult to diagnose, as there is no blood test, or test of any kind that can diagnose the syndrome.

Eilidh Anderson, a 23- year old  who, before her diagnosis, had never heard of ME has had to cancel plans and holidays, can no longer go places on her own, and can no longer work full-time.

Photograph: Eilidh Anderson

Anderson says: “I got diagnosed in February 2019. It took just over two and a half years from my initial illness. However, I had extensive tests to check there wasn’t anything else wrong first.”

“I can’t go anywhere on my own and my life is a lot different from how it used to be.” She adds.

ME has been classified by WHO (World Health Organization) as a neurological disease and is recognised by the Department of Health, NICE, and the Medical Research Council. Around 25% of people are severely affected by the illness with some people becoming housebound, wheelchair bound and bed-bound during the illness, but there is currently no cure.

Anderson says: “My GP said someone with chronic fatigue might recover in 2 years, or they might recover in 20 years. Personally, I’ve found B12 injections as well as vitamin D and iron tablets help to an extent, while resting and learning what my activity limits are has been what has helped me the most.”

Due to this, there has been some degree of research into the condition, not just in Britain, but around the world.

The ME Association has spoken about the importance of research:

“The Medical Research Council regards ME/CFS as a research priority and has issued a highlight notice to encourage research applications – especially in relation to immune system dysfunction and neuropathology. However, most biomedical research is funded by the charity sector, including the MEA Ramsay Research Fund.”

Anderson agrees with this: “More research definitely needs to be done – it isn’t fair to allow so many people to suffer.”

A recent study carried out in Norway has encouraging findings, with 80% of those with ME reporting feeling better after the intense cognitive behavioural therapy course. However, participants reported that, although it helped, it’s still not a cure for ME. Drugs can be used to help with the symptoms and the lack of sleep.

Although ME is a verified official illness, there has been a lot of stigma surrounding the condition. Multiple doctors, researchers and professors have researched potential treatments, and as a result they have faced online harassment.  This is due to the large divide in opinion on treatment of ME syndrome.

Some academics believe it to be biological, while others believe in therapy as the cure to the illness. An Oxford researcher, Dr Michael Sharpe, who developed PACE therapy – which involves talking and exercise as a potential cure for ME/CFS, faced a backlash from the online ME community over his proposals, which eventually led to him quitting his research.

There are various support groups not just across Scotland, but across the world to help people who are suffering from CFS/ME.  The ME Association runs groups weekly, alongside trying to raise awareness about the condition. They also carry out events to raise money for biomedical research into ME, and began an ME Awareness Week (6-12 May).

Photograph: Screenshot 

A spokesperson for the charity said: “We provide information to people with ME/CFS and also campaign on issues such as research and NHS services. The ME Association also provides support through our ME Connect helpline and MEA Facebook page.”

The charity currently runs a number of support groups in and around the Glasgow area, as well as several around Britain.

Jennifer Brea, a 35-year-old with ME, was inspired to produce the documentary, Unrest, which documented her journey in trying to find a cure for the illness.

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