A woman battling a debilitating condition is fighting moves to change its name.

Kristina Bray has said people with ME already have to battle stigma and a lack of understanding of the illness and changing its name will only add to the confusion.

ME, or myalgic encephalomyelitis, is a crippling physical and neurological illness suffered by an estimated 250,000 people in the UK, rising to between 17 and 25 million people worldwide.

The Institute of Medicine in the US is calling for the name to be changed to Systemic Exertion Intolerance Disease (SEID).

Ms Bray, 32, from Hangleton, Hove, was diagnosed with ME in 2004 and says the new name “does not encompass the breadth and complexity of symptoms that it causes”.

She said sufferers have also been forced to contend with an unparalleled level of scepticism and disbelief not only from the general public but also from members of the medical profession.

Ms Bray said: “To this day sufferers of ME are confronted by accusations of laziness and dishonesty, and, despite the fact that it is a proven physical condition, still have to fight against the presumption that its symptoms are the product of a mental illness.

“The anguish caused by sustained disbelief and lack of support has had an extremely adverse effect on people’s well being.

“ME is characterised by exhaustion, muscle fatigue and pain, sometimes insomnia and sometimes the inability to stay awake, tingling and numbness in the extremities and sometimes temporary paralysis and shaking.

“There are also digestive disorders, suppressed immune system, post-exertional malaise and weakness in the limbs which often leads to restricted mobility and the need for walking aids. Blurred vision and cognitive problems can also be involved.

“In my case it causes agonising pain and weakness in my joints and muscles as well as debilitating fatigue and intermittent paralysis.

“I am subject to bouts of shaking and uncontrollable muscle spasms and I experience food intolerance, incontinence and immune dysfunction. My ‘brain fog’ – memory loss and confusion common to sufferers of ME – is so bad that I cannot safely be left alone.

“It is feared that if the term is accepted in the US, it could spread to more general use in the UK and worldwide.”

Ms Bray has set up an online petition calling for the suggestion to be rejected.

Colin Barton, chairman of the Sussex ME Society, said: “Like most organisations along with the chief medical officer’s report and the National Institute for Clinical Health and Excellence guidelines, we use the compromise term ME/CFS that stands for myalgic encephalomyelitis and chronic fatigue syndrome. “The adoption of the term SEID that has been proposed by some in the United States would just add more confusion to the field.”

To sign the petition, visit, change.org and search “Kristina Bray”.

 

‘One of my earliest
memories was crying in agony’

“MY name is Kristina. I suffer from ME.
I have experienced poor health for most of my life.
One of my earliest memories is of being two years old and waking my mother up because I was crying in agony because of the pain in my joints.
From then on and into my teens I struggled with extreme fatigue and joint and muscle pain, as well as bouts of sickness and food intolerance.
Sadly, despite the fact that the pain frequently left me crippled and confined to bed, I found little sympathy at home.
Even when I was able to speak to a doctor nobody could give me a reason for my symptoms.
There were times when I felt desperate. Sometimes I felt like I was going crazy.
It was not until I entered university that I began working with the campus GP to discover the reason for my daily torment. I was tentatively diagnosed with Arthritis. However, this in no way explained my extensive symptoms.
In the last year of my studies I became so unwell that I was missing as many classes as I was attending. With a massive effort I managed to complete my degree course but the limitations imposed by my illness meant that I didn’t achieve the grades that I had hoped for.
It was during the same year (my 20th) that I was referred to a rheumatologist at the Royal Sussex County Hospital in Brighton. It was the rheumatologist who finally diagnosed me with both fibromyalgia and ME.
ME (Myalgic Encephalomyelitis) is a crippling physical and neurological illness suffered by an estimated 250,000 people in the UK, rising to between 17 and 25 million people worldwide.
ME is characterised by exhaustion, muscle fatigue and pain, sometimes insomnia and sometimes the inability to stay awake, tingling and numbness in the extremities and sometimes temporary paralysis and shaking. Also digestive disorders, suppressed immune system, post-exertional malaise and weakness in the limbs which often leads to restricted mobility and the need for walking aids. Blurred vision and cognitive problems can also be involved.
In my case it causes agonising pain and weakness in my joints and muscles as well as debilitating fatigue and intermittent paralysis. I am subject to bouts of shaking and uncontrollable muscle spasms and I experience food intolerance, incontinence and immune dysfunction.
Sadly, my ME means that 80 per cent of the time I am either house or bed bound. I need 24/7 care.
People with ME do not only have to deal with the physical and emotional impact of the condition. Unlike sufferers of most other serious disabilities we also face deeply ingrained prejudice.
Worse, the ignorance and cruelty comes not only from members of the public but also from medical professionals.
I personally have been verbally and physically attacked by members of the public whilst trying to access disability services.
Even worse, after waiting months and even years for medical appointments, I have faced so-called specialists who have declared I don’t believe in ME the moment that I walked through the door.
Luckily, there are some people who understand the real impact of ME. People from all walks of life – people with ME, their carers, friends, family and those who care about the thousands and millions suffering in silence – have worked tirelessly to spread awareness and understanding of ME.
Efforts are made year round and especially on Severe ME Awareness Day, which takes place on May 12 every year.
Progress, however, has been slow and now even that progress it being threatened.
The news broke recently that the Institute of Medicine (IOM) in the US is championing a new name for the illness.
If the US Department for Health and Human Services upholds the change then a new layer of confusion and mystery will be laid over the condition.
The suggested name – SEID or Systemic Exertion Intolerance Disease – does not even hint of the seriousness of ME nor does it encompass the breadth and complexity of symptoms that it causes. To many, it will sound simply like laziness.
Whilst the IOM claim that the name would better identify the nature of ME, I feel that, much like the US coined “Yuppie Flu”, the name can only damage the public perception of ME and those who suffer from it.
If the name change is upheld then many years of work will be wiped out.
Every step forward in raising awareness and understanding of ME will be lost and the hopes of millions of sufferers - for research that will lead to better support, treatment and even a cure for ME - will be washed away.
It could take decades for the damage to be undone. I am now trying to draw attention to the true nature of ME.”