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The Significance of May 12th

Posted in Personal Blog

Today, May 12th, is ME/CFS/FM International Awareness Day.  

M.E. stands for Myalgic Encephalomyelitis.
  • ME is a serious, disabling and chronic organic (i.e. physical not mental) disorder.  ME has been classified by the World Health Organisation (ICD 10 G 93.3) as a neurological illness affecting approximately 200,000 individuals within the UK.
  • Of that number, approximately 25% of those affected will go on to develop severe ME which is an extremely debilitating illness, sometimes lasting for years, in some cases, even decades, often rendering the sufferer completely housebound, wheelchair & bedbound and dependent upon carers for their everyday needs. 
  • The Chief Medical Officer’s Report on the subject of CFS/ME, issued in January 2002, recognises that it should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease
  • To date there is no known specific medical diagnostic test to determine or confirm a correct diagnosis nor is there any specific treatment for this condition.  
In the UK it is generally believed that at least 250,000 suffer from the disorder.
ME/CFS Some Interesting Facts
  • May 12th was chosen as International ME/CFS/FM Awareness day because it is the birthday of Florence Nightingale. She was believed to have suffered from ME/CFS. 
  • Myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS), is a neurological illness (affecting a person’s nervous system).
  • Myalgic Encephalomyelitis means pain in the muscles, and inflammation in the brain and spinal cord.
  • It can occur at any age and can affect children as well as adults.
  • Women are about three times more likely to get ME than men.
  • Around 25 per cent of people with ME/CFS will have a mild form and be able to get to school or work either part-time or fulltime, while reducing other activities.
  • About 50 per cent will have a moderate to severe form and not be able to get to school or work.
  • Another 25 per cent will experience severe ME and be housebound or bedbound.
  • Contrary to popular belief, more than one member of a family can have ME/CFS.
  • Cher in 1992 had to take time out of her career she thought she had the Epstein Barr virus, but later turned out to be ME/CFS.
  • ME/CFS, by different names, dates back to the 1700s.
  • On average, many people with ME/CFS will have improvement in the first five years, but others may remain bedbound or highly housebound for life, or may suffer relapses throughout their lives.
  • ME/CFS often begins abruptly, but sometimes the onset is gradual. In about one-third of cases, the sudden onset follows a respiratory, gastrointestinal, or other acute infection with flu-like symptoms, including mononucleosis. Other cases develop after emotional or physical traumas such as bereavement or surgery.
  • There is no treatment or cure.
 Our Journey with ME

ME came into our lives in 2010, affecting my youngest daughter first.  She hasn’t been able to attend mainstream school since then.  My middle daughter fell foul of ME after suffering from viral meningitis and had to give up her GCSE’s as she was too unwell to access her education. Our lives as a family have been irrevocably altered.  ME is a cruel illness, it cares not who it affects, how old you are or what plans you have for your future.  Prior to Tara becoming sick we knew very little about ME, it was only because we were faced with the harsh reality of the illness that we start to research into it.  We are hoping to change public perception, sufferers need to be understood and supported, there are far too many derogatory myths which need addressing and the truth about this illness needs to be shared.  I hope for a future where sufferers are believed, supported and helped by everyone and not only from within the ME community.

In a bid to address these myths Tara made a video to try to explain to others how this illness has changed her life and also to raise awareness about it and the need for support and understanding from others. She made this when she was only 12 years old (2 years after her initial diagnosis). We have been using this video ever since.

Now that Tasha has also been diagnosed the girls felt that it was time for a new updated video and so for ME Awareness month Tasha and Tara put their heads together to come up with a new one. They are hoping that the video will help raise awareness about the illness and with it hope for better understanding from none M.E. sufferers. There are no obvious signs of illness and this is why ME is sometimes called an invisible illness because of just that – you can’t see it but it is there all the same.
Keisha also wanted to do something to help her sisters and other sufferers. She came up with the idea of setting up a Justgiving page to ask for donations towards Invest in ME Research, in return she would cut off her beloved dreadlocks and shave her head.
This was a  HUGE deal for Keisha as she suffers from Aspergers plus anxiety and depressive disorders. Her dreadlocks gave her a sense of identity, she knew without them she would feel incredibly exposed and vulnerable. But true to her word on Friday 2nd May, Keisha had her dreadlocks cut off by her sisters and then her head shaved by Tasha afterwards. If you would like to participate in helping us to raise funds for biomedical research into this illness you can still donate via and help Keisha raise as much money as she can and to achieve her goal of £1000.
Every year at this time we try to do something as a family too. This year we decided to repeat last years Walk for ME & signed up as a family team. We managed a 2.5 miles along a beautiful canal path with Tasha and Tara both in their wheelchairs, The Dave & Keisha pushing, I juggled the 3 dogs & Keisha’s boyfriend Jack took some photos. We are thrilled to announce that we have reached well over our target of £100 which is amazing.  Thank you to everyone who supported us.
NOTE: In N.Ireland, there are no specialist clinics for ME or Fibro.  The Newry and Mourne ME and Fibromyalgia Support Group have created a petition requesting that the Canadian Consensus Criteria be adopted there, and a new clinic set up.  Please consider signing this petition to help this cause.  It is hoped to be presented towards the end of May, after Awareness Week.

Fully Adopt CCC for ME in N.Ireland

I wrote our M.E. blog today as part of an awareness blog bomb; (#May12BlogBomb)  
A link to direct you to all the participating blogs is below;

 Thank you.


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