Claire Wade
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The ME/CFS World - What's changed in 20 years?

8/10/2012

 
I became ill at ten years old, back in 1993, nearly two decades ago. I come down with a mystery virus, saw lots of doctors, went for lots of blood tests and was told there's nothing wrong with me. I was continually asked do I like school? Am I being bullied? The answer to that was I loved school and had lots of friends, it made no sense for me to "pretend" to be ill. I was missing out on so much and hated it. All I wanted was to be well.

Nobody understood except for my Mum. Family, friends and my school didn't understand why I couldn't "just" do things, like go to school, go out, do the things that everyone else my age was doing. They implied I was being lazy and difficult. It hurt so very much, their silent criticism, how easily they forgot who I really was, who I used to be. The happy, bubbly, outgoing little girl.

I spent two years not knowing why I was so ill, being made to feel like I was making it up or pretending, until eventually my family found a specialist who I saw privately. Finally I got a diagnosis of ME. We found support groups and other sufferers and realised we weren't alone, other people were going through the exact same thing.

We had to fight to educate everybody around me, including the doctors, to teach them about my illness, my symptoms and the things I could and couldn't do. We became the experts and we had to fight against this stupid stigma that it was an illness that was all in the mind.

I believed that twenty years on things would be getting better; but I'm furious and devastated that they aren't. This morning I heard of a little girl who had just been diagnosed with ME and her experience is exactly like mine was. No diagnosis, doctor's didn't believe or understand, no tests, no treatments, no support from the school. It makes me so angry and so very sad that in twenty years things are still the same. When are things going to change, because it really is about time it did. People are suffering and until the health service starts to take it seriously and puts real money into bio-medical research, then millions of people around the world are going to have to deal with the same horrific situations. This isn't Ground-hog Day, this is people's lives.
Claire Wade is the winner of the Good Housekeeping Novel Competition and author of The Choice. She was bed bound for six years with severe ME, trapped in a body that wouldn't do what she wanted. She now writes about people who want to break free from the constraints of their lives, a subject she's deeply familiar with.
Mary Smith
11/10/2012 05:34:26 am

Hi Claire,
Sorry to see you have been ill for so long. My daughter who is 27 years has ME and we are finding exactly the same as you. She has researched a lot too. Have you seen a copy of the book "Missed Diagnoses" by Dr Byron Hyde. It is very helpful and I bought our GP a copy. I am sure you must be aware of the Hummingbird website and Nightingale website. Professor Malcolm Hooper has presentations on U Tube and has researched into the disease trying to raise awareness with the authorities that ME is a physical disease and not behavioural like psychiatrists have made it into. We have found a private GP in Wales called Dr Sarah Myhill who has a website to try and help people with ME and my daughter has had mitochondrial function blood tests taken which demonstrated poor mitochondrial function. (NHS doctors don't seem to understand). Dr Myhill has advised on various supplements and Vitamin B12 injections daily as well as melatonin to help improve the quality of sleep. Professor Malcolm Hooper on his u tube presentations also states that patient's with ME need large doses of Vitamin B12 injections. My daughter has started to show signs of improvement since starting to follow Dr Myhill's plan and has been able to get downstairs occasionally now although it still early days. We have to obtain all this privately as NHS doctors feel dose of Vitamin B12 should be given every 3 months not daily. However it is a water soluble vitamin and any excess is excreted by the kidneys and apparently you can't overdose on it.
You may have heard of all this but thought I would mention it in case you found it helpful.
I hope you continue to improve.
Take care
Mary

Claire link
24/10/2012 05:15:21 pm

Hi Mary,

Thank you so much for your comment and all the details about the treatment your daughter is having. I'm so pleased it's helping her. I've heard about Dr Myhill's work; but not looked into it myself. I'll be following up on the information - thank you very much!

Best wishes to you and your daughter,

Claire


Comments are closed.
    Claire Wade

    Claire Wade

    I'm an author, disability activist, winner of the Good Housekeeping First Novel Competition and The EABA for Fiction 2020 and founder of Authors with Disabilities and Chronic Illnesses (ADCI).


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