I wrote this entry on May the 1st 2009, in response to Blogging Against Disablism Day. I wanted to raise awareness of what it is like to have ME or an invisible disability. I have included it here to help you learn more about ME, my story, and  why it is important to raise awareness this ME awareness week May 11th-17th.

Unfortunately, I relapsed not long after writing this and have been cycling between bed-bound and mostly house-bound since, although I have been improving lately. I also have developed more severe symptoms including seizure-lik episodes, where I become paralysed and have myoclonic jerks. I am having my first MRI to investigate these in a week. In January this year I also became diagnosed with Crohn's Disease, a form of inflammatory bowel disease, which explained some of my nutrient deficiencies and fatigue, but not much. I had also not begun my charity WAMCARE back then.
I also didn't realise how many of the ME/CFS charities in the world are supporting the psychological viewpoint of ME/CFS.

Raising Awareness of ME/CFS

Today is blogging against disablism day and given that I have Myalgic Encephalomyelitis (ME,) or chronic fatigue syndrome (CFS,) I know all about being disabled. Only my disability is invisible. Or at least it is most of the time. Those of us with ME know how to hide our disability as best we can until it reaches the point where we run out of energy and we start to slip through the cracks. If you look close enough you will be able to identify us.

We are the people with pale faces and big dark circles under our eyes.

We are the people with the poor posture, even if we have the energy to stand or to sit it is likely that we are hunched over, unable to put the energy into supporting ourselves completely.

We are the people who get nasty comments because we are in a wheelchair one moment but may be able to walk short distances the next.

We are the people who walk agonisingly slowly, often holding on to things or supported by other people when we have run out of energy and our muscles are struggling to support us, or because our joints and muscles are sore and it is hurting to walk.

We are the people who collapse, or have to get up slowly, because our blood pressure is extremely low and we are liable to faint if we get up too fast or stand up too long.

We are the people who stare into space when it becomes too hard for us to focus on a person or on what is going on around us.

We are the people with expressionless faces when our strength has gone and we can no longer smile or laugh because our muscles even in our face are too weak.

We are the people with such poor control over our body temperature that we wear loads of layers and can go from shivering one minute, to being so hot that our heads are spinning, our hearts are racing, and we almost pass out.

We are the people sitting or lying on the floor in shops when we have become too weak to stand, or in car parks when we are waiting for our lifts.

We are the people who buy clothes and take them home to try on because it takes too much energy to find the changing rooms or to go up and down the stairs.

We are the people who are silent when we lose the ability to talk.

We are the people who appear disinterested when we have lost the cognitive ability to understand what you are saying.

We are the people who leave the room at a party because the loud noises make us feel very ill and we can’t concentrate on talking to so many people at once.

We are the people who drink huge amounts of fluids because our kidneys dont work properly and we become dehydrated easily.

We are the people who some days are too sick to get out of bed, not because we aren’t motivated, or because we are depressed, but because we try but are too weak and our limbs won’t work.

We are the people who get accused of lying and malingering by our families, our friends, our doctors, and our government when we are too sick to work.

And for the most severe sufferers amongst us we are the lost voices, the people who are suddenly gone from the lives of the people who are well. The people who spend years in bed, unable to move, and in extreme pain.

I bet most of you know someone with ME? Someone who was part of your lives, full of energy, an amazing friend/relative and then suddenly they became sick and before long you lost contact. I am guessing that you were never able to understand why this happened and therefore I am going to do my best to explain about ME and why we are the way we are. I need to do it for the sake of all the people who are too ill to do it for themselves.

There are 250000 people with ME in the UK. Most people have a relapsing and remitting illness, where they can manage to stay fairly stable if they stay within their own boundaries. If they exceed those boundaries, whether it is to sit up in bed, or cycle round the block, then they can very quickly because very exhausted, weak, unable to move, or to explain what is wrong. This will then cause them to relapse and within the next 24 hours or longer they will become far worse than they were before they did too much. However, a small proportion of people have a progressive illness where by everything they do is too much and they get continually worse. Some patients appear to improve as long as they don’t overdo it, with some patients going in to remission and being able to live normal lives for a period of time. However, studies have shown that only 2% of patients recover completely.

People with ME have a reputation for being tired all the time. And a lot of healthy people often comment that they too are tired, but they just get on with their lives. This tiredness and fatigue is so extreme that for some people they are completely paralysed. For some, if they have worn themselves out from their daily activities and they need to lie down then they cannot actually physically get up again. And this is not the only symptom; fatigue is just one glimpse of what it is like to have ME. What most people with ME feel on a daily basis to varying degrees is as if they have the flu all the time. And I am not talking about a cold, I am talking about whole body weakness, feeling rough, often nauseous, with an awful headache, pain in your joints and muscles, a fever, hot and cold flushes, a sore throat, swollen and sore glands, inability to concentrate and dizziness on standing. People with ME also have some form of sleep disturbance, sometimes this is insomnia, other times they will often sleep all day and night. A lot of people with ME also have a poor circadian rhythm, often finding they cannot sleep at night until very late, and find it impossible to wake up in the morning and often don't until the afternoon.

The cognitive symptoms of ME can be extremely disabling alone: short term memory is poor, confusion can be prominent, people have difficulty finding the right words or explaining themselves, and at the most extreme cannot talk at all. Most people with ME describe the confusion as ‘brain fog’.

Mentally energy and physical energy come from the same source, so if a patient does too much mentally for example, talking too much or studying for too long, then they will also collapse and feel as if their brain is as I like to put it “mushed” and as if it will explode.

For those with the most severe ME, they spend their lives in bed completely paralysed, unable to move, tube fed, as they are unable to swallow, battling awful nausea, in extreme pain from headaches and their muscles and joints, blindfolded because their sensitive to light, wearing earplugs as they are too sensitive to noise, unable to talk, unable to comprehend what people are saying to them, having seizures and muscles spasms, severe dizziness, and unable to be touched as they are too sensitive. The carers of people in this condition have to watch their loved ones unable to move, be in extreme pain, yet they are unable to comfort them, as the sounds of their voice or their touch will make them worse.

In the most severe cases people's bodies become unable to tolerate solid food and in a few cases even water, causing patients to die. In some people the heart muscle also becomes affected and patients have died of cardiac failure. Other patients have died of illnesses that come from being immobile and having a poor immune system. Also in many cases patients have committed suicide, usually as a result of severe pain, or as a result of depression which they have got due to being so ill.

Despite common belief that the illness is psychological, there are over 5000 papers confirming the biomedical nature of the illness. Unfortunately diagnostic tests and treatments are not available yet. Despite the amount of progress which has been made with identifying genes, mitochondrial abnormalities, viruses and nutritional deficits present in people with the illness, and potential diagnostic tests, I understand that the UK government has never spent a single penny on biomedical research. This is something we are working very hard to change.

International ME awareness Week

It is International ME awareness week 11th-17th of May, with May 12th being international awareness day, and I and many others are working hard to make the world safer for those affected by this horrible illness and their loved ones. We are trying to make the world an ME friendly place, by educating the ignorant, getting ME/CFS seen and heard, dispelling the myths, eradicating the stigma, the disbelief, the social isolation and the bullying. We want to make this world a place where ME/CFS sufferers are not afraid to admit they have the illness.

The Association for Young people with ME (AYME) are making it their mission this year to make the voices of those people with severe ME heard. And although I have not had the most severe form of this illness, I have spent some time classified as under 30% on the functional ability scale (thus being severely affected.) In fact I was about 15% at my worst. Thus I am going to tell you my story in brief.

My story

I have probably had ME since I was 13, although very mildly until I was about 20. I have had glandular fever at some point and it is possible that this was part of the cause of the initial illness although I am uncertain. I was managing to study medicine at university since 2005, albeit struggling, and after a four day emergency stay in hospital in April 2007 when they thought I has inflammatory bowel disease, (they ruled it out at the time, but this year, 2010, I was diagnosed with it) and being passed around rheumatologists and other specialists to rule out Lupus and Rheumatoid Arthritis I finally became diagnosed with ME in September 2008.

By November I had suffered badly with two nasty colds, complete with fevers and coughs, which both caused relapses and that as well 9-5 placements took such a stress on my body that I became unable to look after myself, and took extended leave from university. My grandparents have been looking after me since December.

 At the end of December I had a further relapse after attempting to go to the GP and ended up bed-bound. I remember getting back from the GP and it taking my mum fifteen minutes to drag me up the stairs, by which time I slept for the rest of the day as my body could not handle what had happened.

For the next few weeks I could not even sit out of bed to eat, I was assisted to walk to the bathroom (I kept almost fainting or collapsing and could not weight bear without help) and this was all the activity I could manage, other than talking for no more than five minutes at a time, and watching an hour of television a day in four fifteen-minute sessions. I had to spend most of my time resting and trying to ignore the vertigo, pain and the feeling as if my brain would explode if I tried to talk for too long, or tried to do any physical activity. If I overdo it I become too ill to speak and cannot even lift my head off the pillow by myself, this is still the case even now.

By early February, I managed to leave the house for the first time, (to sit outside for a few minutes).  And now I can go out in my wheelchair for a few hours with my friends some days. My muscles are slowly returning (deconditioning obviously plays a part when you have been inactive for so long.) I still have to spend at least half the day or more in bed resting, but I can do small activities like use my laptop and watch TV during this time which is a huge improvement. Obviously I want to go back and finish my degree, but I have no idea if that will happen or when so for the moment I am just concentrating on getting better, enjoying what I can do and doing my best to raise awareness.

If you are interested in helping, then here is what you can do:

If you have ever not understood someone with ME or another invisible disability, have ever hurt someone, lost contact with them, ridiculed them for faking their symptoms or not believed them, then now is your chance to make amends. If you have lost contact with anyone with a disability then now is your chance to rebuild contact and re-establish lost friendships.

People with ME need your support; social isolation is a major factor, especially for children with ME who can no longer attend school. If your child used to be friends with someone who they no longer see because they are ill, maybe you could encourage them to visit. Or if you see someone out and about who appears to be struggling and you suspect might have an invisible disability, then please do offer to help, even just little things can make a huge difference. It can be very scary when you are out and you are worried that your legs might not carry you back to where you need to be again!

If you know of any young person aged 5-25 in the UK who has been diagnosed with ME then let them know about the Association for Young people with ME (AYME). This is a charity which provides a good website and posting boards allowing many people with this illness to make friends and overcome the loneliness and social isolation which this illness can entail. www.ayme.org.uk

Finally there are those of us trying to get people to display a blue ribbon in their online profile pictures for ME awareness week! Our initial aim is to get ME seen and heard online, to educate the ignorant and to raise awareness.

This is what we have to say:

  • 28 million lives are at stake. ME/CFS is rarely fatal, but it does leave previously ambitious, healthy people watching their lives and their loves slip through their fingers.
  • We are trying to get the message sent across the world that ME/CFS is real and deserves as much attention as other diseases.
  • All we ask right now is that you put a blue ribbon in your profile pictures across the internet and invite your friends to do so as well in the week of May 11th to May 17th. May 12th is ME/CFS Awareness Day.
  • Your simple act of replacing your picture in all your profiles on the internet with an ME/CFS badge will indicate to the world that it is time for the silence to end and that you recognise that something must be done for the people suffering in silence from this devastating disease.
  • Go Blue on May 12th and show the World that people with ME/CFS are visible.
  • The blue ribbon indicates that you want governments around the world to support biomedical research into ME/CFS.

Thank you for reading and I sincerely hope that this has changed your opinion about ME and invisible disabilities in general. I know that together we will do amazing things! I will leave you with this quote:

"I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!"
- Dr. Marc Loveless