From International Business Times, a feature written by Lydia Smith for International Day of Persons with Disabilities, 3 December 2014.
In Britain alone, a quarter of a million people are affected by an illness of uncertain cause. There is no treatment for myalgic encephalomyelitis, or chronic fatigue syndrome, but the condition has a long list of debilitating symptoms and consequences.
Lives are changed drastically in those with ME. In the young, education is disrupted or limited. In working adults, employment can become impossible – with knock-on financial and psychological effects. For all, social and family life is restricted.
Philippa Jennings, 26, has lived with ME for 23 years. She contracted glandular fever at the age of three, which left her with the condition. Viral infection is just one potential cause for ME, as well as immune dysfunction, hormonal imbalance and stress.
Life with ME
“Living with the condition is unpredictable,” Philippa told IBTimes UK. “I have no idea how I am doing to feel from one hour to the next. I have been in a ‘relapse' for about two years now, following an ill-advised stint in full-time work.
“The fact is I can't work full-time, and life has been easier since I accepted that.”
At the moment, Philippa's ME is classified as mild to moderate. But this is the best she has felt in a long time, and there is no telling whether this period will last. In late 2012, Philippa suffered a severe relapse.
“It was the worst I have ever had,” she recalled. “Before I relapsed, I had been accepted onto a Masters course in composition at Leeds College of Music. I had a full-time job in finance and was teaching too.”
“I had taken on too much and found myself getting confused and exhausted,” Philippa said. “At home, I crawled from one room to another as my legs wouldn't hold me.”
She bought a wheelchair after being put on a three-month waiting list for an assessment.
“It was fantastic, I could get around the shops and be out for hours without being in agony or collapsing.”
Diagnosis
ME is recognised as a medical condition by a number of organisations – including the World Health Organisation and the Royal Colleges of Physicians, Psychiatrists and General Practitioners – but a diagnosis of the condition still poses a problem.
The symptoms of ME are present in a number of other medical conditions, which means there has to be a process of elimination. The most prevalent symptom is severe fatigue following mental or physical activity is a predominant symptom of ME – the full extent of which often only becomes apparent between 24 and 48 hours afterwards.
Long-lasting flu symptoms, muscle pain, cognitive dysfunction, sleep disturbance, irritable bowel symptomatology and problems with the nervous system, such as fainting, are also common. Some ME sufferers develop depression or anxiety as a result of persistent symptoms.
Tony Britton, of the ME Association, said ME blights lives. “From suffering a flu-like illness that never seems to go away, to delayed recovery after any form of mental or physical exertion and being bed-bound, ME is debilitating. Those with the condition can be plagued by bright light, loud noises and in some cases, fed by tube because the swallowing muscles do not work.”
“Any number of allergies and sensitivities wash around in its wake, with unpleasant reactions to certain foods, cleaning fluids, bowel and bladder disorders and sensitivity to extremes of temperature,” he added.
Philippa received a diagnosis when she was ten.
“I had been a sickly child for years I had test after test – one doctor suggested I was deaf, another suggest epilepsy, but I had an electroencephalogram which came back normal,” she said.
“I was a child, and children aren't supposed to get exhausted. The fatigue enveloped me for months,” Philippa explained. “I was referred to a paediatrician and tested for everything.
“Within minutes after receiving test results, the doctor said ‘chronic fatigue syndrome – it's a textbook case' – and that was the first time I had ever heard of it. The advice to my parents was ‘take her out of school, and wait'.”
Stigma
While knowledge of the condition is improving, sufferers are still being blamed for their own illness.
“There are no psychological quick fixes for serious, classic ME, but there is mounting evidence that it is caused by a barrage of neurological, immunological and endocrinological assaults on the body,” Britton said.
However, he added, the evidence is largely ignored.
During Philippa's relapse in 2012, she was still working full-time but felt she could not tell her work – despite struggling to be able to walk.
“I knew I should have told my employers, but I had bitter experience of misunderstanding the illness, so I didn't until it got really bad,” she said. “It turns out they were fantastic, allowing me to work part time and use my wheelchair when I got worse.”
But people have not always been sympathetic. Philippa applied for a disabled parking permit twice, but was told ME was a temporary illness, so she would not be eligible.
“Although I'm not using my wheelchair right now, there is no way of knowing how long I would be ill for – and no treatment. A lot of people are wheelchair-bound for years, and the fact this is caused by ME should not be a reason to deny someone their badge.”
When she relapsed in 2009, Philippa was told there were no specialists in West Yorkshire – and given a sick note. But things are slowly improving.
“In my last relapse, I was referred to an ME clinic in Leeds and received support and advice. If you are diagnosed with a condition like this, it can be frightening and feel hopeless. You are transformed from a functioning human being to one that can't hold their weight off the ground – and you are told to manage your symptoms and wait,” Philippa said.
“Can you imagine being told this when you are a mother working full time? Or a young person starting their career? It is the uncertainty that comes with the illness that is the worst.”
There is no treatment for ME, but headway has been made in understanding the illness. In October, Stanford University scientists found clear differences in the brains of people with ME, compared to those without the condition. Published in the journal Radiology, CFS patients had less overall white matter – the nerve tracts that carry information around the brain.
“We want the UK to be a better place for people with the condition, so ME Association campaigns for it to be widely recognised and taken more seriously,” Britton said. “We also fund biomedical research into the illness – with the hope that one day science will find that elusive cure.”
This is one of the best (accurate and sympathetic) articles in a mainstream publication that I have ever read on M.E./cfs. Thank you.
Wanted to copy and paste something I recently wrote on Facebook having read this article – which is accurate and well written, thank you for choosing this as your topic for disability week:
“A very accurate and weighted article. To this day, when I see what I have in my body in black and white on pages I cry, I cant help it. It reminds you about what you don’t want to think about or acknowledge. But it is there. Sometimes invisible but you always feel it lurking.
I very nearly wasn’t here 8 years ago. It seemed I had lost all my identity and all my dreams and hopes for any kind of effective future went with it. But I chose to give life one more shot – my best shot. I moved, bought a house, a dog and found a job.
I was INCREDIBLY lucky and blessed by the angels to have found a company, who despite me only working for them full time for 1 year – allowed me to go part time when I relapsed…from then on, with the M.E out in the open, they allowed me to work on a ‘as and when able’ basis; they tolerated many last minute let downs, contrasted with bursts of capable dedication only to again experience my let downs if I relapsed on projects – but NEVER once did they show their frustration in front of me, instead they continued to extend trust and professional respect towards me. I was one of the lucky M.E sufferers in this. This company, NWA Research saved my self worth many times over the years when my body and mind felt useless to me and I got depressed and frustrated with myself. Working when I could had afforded me a ”purpose”. Having a purpose when you feel useless, is very important. It gives you pride, focus.
From being a determined human being that excelled and was promoted in nearly every position I was employed in, and from being a cyclist, swimmer, tennis player and runner – to not having the use of my legs, to having a speech impediment, to having three carers and memory retention issues after going through non-epileptic convulsions due to my parasympathetic nervous system overloading due to the M.E – is a life altering experience. That is how M.E takes away from you all of who you believe you are and makes you dig so, so deep to pull out who you can still manage to be. To my shame, it has taken me 21 years to do just that an finally get some health and happiness back. Maybe stronger people could have done it sooner. None the less, digging deep – that grit can be the only thing that keeps you going when your mind fogs, your body collapses, or when you stare back into the mocking or disbelieving face which talks at you using the ignorant words, ” M.E is not real”.
For those that don’t know about M.E but ‘know someone who has it’ – this is a brief article, easily digested, for you, so that if you meet someone that has M.E you will know how best to interact with them and how to avoid unknowingly pressuring them i.e. come on, come on out – you can always get the bus here if you want a drink, it’ll be fun !” NO – THE BUS JOURNEY IN ITSELF IS EXHAUSTING, to then have a social night and have to get the bus back CANT BE DONE !!! So I have posted this article to raise awareness. This awareness can make the difference between an interaction which triggers deep sadness about their condition to an interaction where they can still feel ”normal”
So, don’t be annoyed if someone with M.E ”lets you down” or ”wont make the effort to drive to you” or ”always switches off from you after an hour of chat” or wants to avoid loads of noise and light and activity i.e. screaming kids… they are experiencing surreal sensations about the surrounding environment, blurred vision, nausea, disorientation, anxiety and usually, if not always, pain in their body. All such things are overwhelming them in that moment as you try to ”talk at them” or ”encourage them” to join in the fun and do activities !!
When a person has mild to moderate M.E do all you want with them – go for it !!! But during relapse, lay off them and understand that for short while at least, you have to accept your expectations of them will not be met
That said, thank you to ALL the people that show understanding and patience with me, it all matters, in fact, 8 years ago – it kept me here “
I find myself feeling very isolated and with no real support when it comes to my career. I’m divorced and need to keep my family home going for the sake of my daughter. I work four days a week as a lecturer- not the ideal job for someone for Me/CFS even if, as in my case, it’s mild to moderate. I have a lodger and do a bit of airbnb to earn extra cash.
I can’t see a way to make the transition from my present job, which I have to commute to a city to, to something home- based- the simplest thing would be to run my own business and/ or to do some freelance work for exam boards. However I can’t risk starting either of these on top of my present job as that would make me relapse, and I can”t afford to cut my hours or leave my present job as I would find it tough to claim any benefits. As there is no real careers service any more, there is really no one to call on to help me negotiate this. My worry is that my employers may cut my hours or let me go if i can’t keep up, at which point I could lose my home. I try to be philosophical about this, but it is indeed a source of stress and frustration to me.