- 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.
- 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.
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.
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 https://www.justgiving.com/keishasdreads and help Keisha raise as much money as she can and to achieve her goal of £1000.
A link to direct you to all the participating blogs is below;