Ed: Updated with more links – 11 April 2021
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#millionsMissing. Have you heard about it?
“ME/CFS”. Do you know what it is?
12 May is not only my birthday but also the sixth anniversary of Myalgic Encephomyelitis (ME) International Awareness Day for the #MillionsMissing. This has been represented in many places around the world by millions of empty shoes. My own, along with my daughter’s were taken to Geneva!
Here’s a link to a video about the ‘Empty Shoes’: https://images.app.goo.gl/nQdMZw6UNajdXRrL9‘
ME is a grossly maligned and misunderstood by the public and the medical profession even though it is classified as a neurological condition by the WHO.
ME is multi system disease that causes profound metabolic dysfunction along with physical and cognitive limitations. 80% of people report it starts after an infection like the flu and have never recovered.
ME affects more than 250,000 people in the UK alone. More than MS and more than HIV/AIDS. There is no known treatment. There is very little research due to lack of funding. 75% of people with ME are unable to work, 25% are housebound and even bedbound. ME also has a huge impact on their family and friends who have to bear the brunt of the work, finances, physical and emotional rollercoasters.
The following is a quote from the ME Association;
“ME/CFS is as disabling and has a greater impact on functional status and well-being than other chronic diseases such as cancer. The emotional burden of ME/CFS is felt by lay carers as well as by people with ME/CFS.”
I am lucky? Or maybe I’m not? I started with ME only four years ago at the age of 64. I’m predominantly housebound and going for a short walk can have weeks’ long impact and reduce my ability to do anything else. However, my daughter has had ME for at least 26 years and I was her carer for many years when she was bedbound, unable to sit up or feed herself. I also have a niece who has ME; no it’s not hereditary but there is a genetic predisposition.
There is a strong possibility that ‘Long Covid’ will present a similar picture. Let’s hope that, with so much emphasis on Long Covid, ME will not get forgotten again and that research funding will expand to cover both illnesses.
This is only a very brief outline. There is further information available at these sites:
- Action for ME – https://www.actionforme.org.uk/.
- ME Action Net – https://www.meaction.net/category/millionsmissing/
- ME Association – https://meassociation.org.uk/.
- Millions Missing – #millionsmissing
- ME Action – #meactionuk
- Updated 11 April 2021
- Children with ME – https://www.tymestrust.org/
- Severely affected by ME and housebound with ME – https://25megroup.org/
Ed: This letter has been sent to various local newspapers and MP’s.
Morag happens to be my wife! I’m so pleased that she has found the courage to write this.
If you would like further information on what it’s like to live with this invisible illness please contact me on firstname.lastname@example.org
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