M.E. and Me

What is M.E?

M.E (Myalgic Encephalomyelitis) or C.F.S (Chronic Fatigue Syndrome), is a serious neurological disease which can cause long-term illness and disability, it is in the same category as Multiple Sclerosis and Motor Neurone Disease . There are a whole range of symptoms which vary from person to person, and patients may be diagnosed at different points on the spectrum of severity - from mild to severe (bed bound, tube fed, unable to speak etc.). M.E can be fatal but only in the most extreme cases; the death rate is roughly 3%. What is much more common, is patients committing suicide - not necessarily due to depression, but out of desperation: they are so ill/disabled and have minimal support from health professionals and even their friends and family. 

Symptoms include:

• severe fatigue/malaise
• pain: muscle pain, joint pain, neuropathic pain, headaches etc.
• fasciculations (visible muscle twitching/spasms)
• cognitive dysfunction: brain fog, short term memory loss, trouble concentrating etc.
• trouble with temperature control
• sore throat, enlarged glands, and other flu-like symptoms which indicate a weak immune system
• sleep problems - most commonly patients get little to no benefit or refreshment from sleep
• irritable bowel syndrome
• nausea
• sensitivity to light and sound
• anxiety and depression

There is little understanding about this very debilitating condition, However, the basic explanation is that the symptoms are caused by the brain sending the wrong signals to the body - hence why sufferers experience extreme exhaustion after even the smallest of activity and severe pain without injury. Brain scans of M.E patients show how the neurological pathways in the brain have become connected in the wrong way. There is currently very little research and understanding as to how and why this happens!

My Story

I first became ill in the October half-term of 2009, I was 11 years old and had just started secondary school. It started with the fatigue. I slept for basically the whole week! When I tried to stand or exert any energy I felt weak and nauseous, I was also suffering from a constant headache. After feeling like this for a couple of weeks, my mum took me to the GP. This was the start of a year long journey consisting of many blood tests (I soon lost count), and visits to various doctors and health specialists, until I was finally diagnosed with M.E/C.F.S by a paediatrician in October 2010. This was great news for a blissful 5 minutes in which I sat there thinking "Great! We finally know what's wrong with me! No more scary diseases being suggested and needles being poked in to me here, there and everywhere"... until I saw my mum had tears in her eyes as she looked at the doctor and said "I was really hoping it wouldn't be that." 

And so that was the moment I was told there were no treatment options for my condition but that the doctors could only try to help me manage my symptoms. I left the hospital that day finally being able to put a name to my condition, yet with no real prospect of getting any better.

The first 18 months that I was ill has to have been the worst period of my life by far. I was a young teen, completely isolated when I should have been at school and enjoying sleepovers with friends on weekends: enjoying all the things normal kids get to do. Yet my days consisted of my bed, the sofa, and occasionally making it into school for a few hours at a time. Due to my peers being insensitive, puberty experiencing, immature 12 year olds at this time, I lost pretty much all my friends. This is not something I blame them for or feel bitter about - they weren't old enough to understand how to handle my situation, however, it of course made my condition so much harder to bear. I was sad and lonely, with only crap day time telly for company.

I had to sleep during the day. This is a picture of me whilst staying with friends. I had to leave the fun and go to bed during the day but Lila and Tink decided to come and nap with me! I guess it's true what they say about animals sensing when someone is unwell and needs a little TLC.

After 18 months of this illness, I tried a treatment called LP. This was a little heard of treatment, that was scorned by many doctors and was not available on the NHS, but I was desperate, and so were my parents! And it worked! I experienced an incredible year of good health, for which I am extremely grateful. I made new friends, re-built my confidence, and began to really enjoy life again.

Once I was well again and back to school, I became chums with this absolute gem, she is my best friend to this day. This is a picture of us on my 15th Birthday.

However, after this year, my symptoms slowly began to creep back in, my health spiralled out of control again until I reached the point where I am now: constantly experiencing mild to severe fatigue; neuropathic pain in my legs, arms, and back; fasciculations; IBS; occasional brain fog and sensitivity to sound; and un-refreshing sleep. Although I do my best to live as normal a life as possible, these symptoms make day-to-day living a thousand times harder for me than everyone else. I do not want this post to be a 'boo hoo look how hard my life is' post so I will leave you to use your own intuition to imagine how these symptoms have an affect on me. 

I feel I have pretty much mastered the art of pushing through the pain and exhaustion and painting a big smile on my face to cover how I'm suffering inside - often people's initial reaction when I tell them I'm ill is "Wow, you would never know!". This is something I've often taken pride in: that I am able to appear happy and healthy so that people decide how they feel about me as a person without any preconceptions or assumptions based on my health. However, this approach often comes back to bite me on the bum as it were! Both because it can mean people don't actually believe I'm ill and because I often push myself too far and end up making my situation worse for myself. This is something I am still working on: getting the balance between activity and rest, right.

I, of course, have days when my situation feels hopeless and I feel scared for my future, yet most of the time I have a very positive attitude! I am learning more coping mechanisms all the time, I'm even considering giving LP another go. I know my situation could be so much worse and I choose to focus on all the blessings I have in my life: an incredible family, wonderful friends, a lovely home etc. I know this is such a cliché but I really feel that having this illness has strengthened my character, I've learnt to value the small things in life, and have discovered who truly cares about me. 

#MillionsMissing

Now we get on to the real reason for making this post. Quite frankly, the way the medical profession treats M.E/C.F.S patients is shocking. Doctors are not educated properly about the condition, for this reason for 67-77% of patients - such as myself - it takes over a year to be diagnosed. In addition, for about 29% of patients, it takes up to 5 years to receive a diagnosis. As I previously mentioned, even once you have been diagnosed, there aren't any treatment options as very little research is being carried out for M.E. This is completely ridiculous when you know that approximately 250,000 people currently suffer from this condition in the UK, along with up to 2.5 million people in the USA and millions of others around the world. Meanwhile, other conditions which affect less people are given more funding. For example, Parkinson's disease affects roughly 127,000 people in the UK, and Multiple Sclerosis affects around 100,000 people. I am in no way suggesting that these conditions are not worthy of the funding or research that they receive, it just baffles me that a condition of equal severity which affects thousands more people does not receive nearly as much funding for research.

This diagram illustrates the disproportionate relationship between the number of patients with M.E/C.F.S and the amount of research funding into the disease, compared to 4 other major illnesses in Canada. This relationship is mirrored across the globe.

The following are some quotes from two doctors who have worked with both M.E/C.F.S patients and H.I.V patients which I feel highlight this issue well:

"My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in or care for their families. I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it." - Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami

"[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades". - Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University 

In response to this, M.E Action started a campaign called 'Millions Missing' to challenge governments to invest more money in M.E research by providing a voice for all the millions of M.E sufferers around the world who do not seem to be significant in the eyes of the medical profession. On the 27th September this year (just a few days ago) this movement reached the UK and demonstrations were held in various major cities up and down the nation. The main feature of all these demonstrations were rows of donated shoes, each with a label telling the story of an M.E patient, in order to illustrate how these patients are forgotten and left to suffer alone without medical support. The biggest of these demonstrations took place in London outside the Department for Health, during which (in addition to the rows of shoes and people with posters and leaflets) a very brave young lady called Janet Eastham stood naked and blind folded, holding a placard which read: 'YOU CAN'T IGNORE M.E. NOW'. I of course can't post the image on here but it is an incredibly powerful photograph and is worth looking up.

I thought this movement was brilliant! It brought attention to issue in hand in a peaceful and visually impactful way.

How you can help

Thank you so much for reading this, I know it was very wordy and long but there is just so much to say! I hope this post has widened your personal understanding on M.E/C.F.S. and that you will in turn help to raise awareness. I will leave a variety of links below where you can find more information and advice. Please spread the word about the lack of support for this condition so that we can encourage our governments to step up and take action! There are several very easy things you can do to spread awareness including: sharing this blog post or any of the links below, retweeting any tweets about the issue, signing online petitions aimed at persuading the government to invest more into M.E. research, or donating money to the M.E. Association or M.E Action etc.

Thanks again!

With love,

Katie xxx

Helpful links and more information:

M.E. Association

Association of Young People with M.E

M.E Action (Millions Missing)

#MillionsMissing

Sign a petition