Today, May 12th, is Florence Nightingales birthday and so the chosen date for International ME Awareness Day ~ which many health care professionals persist in calling Chronic Fatigue Syndrome (a name I loathe). So why do we have an international awareness day?
“If a cause and cure are to be found for ME/CFS, FM, MCS and related illnesses in the near future, government and medicine must be made fully aware of their scope and impact. Despite the efforts of a number of dedicated groups and individuals, there are still vast pockets of ignorance and misunderstanding. To this day, many patients run directly into a medical establishment that, in general, knows very little about these serious threats to human health. It is therefore crucial that all those affected by the illnesses make their voices heard, especially on May 12th of each year.”
[RESCIND. INC. org]
Within my family 3 out of 5 of us have ME, myself and my two youngest daughters. I also have become close to a number of other sufferers via the wonders if the Internet, a major life line for sufferers to keep them from total isolation, who also have multiple family members with this illness too. It doesn’t discriminate against age or sex, young children through to adults can fall foul of its insidious evil. It messes with your brain, massively affecting your cognitive functions, it reduces your memory, speech, thought process, all neurological functions. It interferes with all body systems too, causing sensitivities of skin, sound, light, temperature, numbness, tingling, pain, paralysis, gut issues & intolerances, exhaustion, insomnia or being unable to stay awake, post exertional malaise and so many other numerous symptoms of which there are too many to mention. These symptoms aside from being hugely frustrating are also frightening as you lose the ability to be in control of your brain and body. To have such severe cognitive dysfunction that my husband told the doctor he was concerned I had dementia is terrifying.
When the girls were first diagnosed 6 years ago we were given poor advice and pushed to jump through treatment hoops we were sceptical about in order to not have social services brought in and our role of advocate for our children taken away from us ~ it was a terrifying period. Thankfully, now they are 16+ this cannot be instigated because they are now considered adults and able to make their own choices. For my part, bring officially diagnosed in January of this year, the help and support received by adult ME services is completely different. We have been recognised as suffering from a complex neurological multi-system disorder which renders us disabled and eligible for access to work support, aids to help us in our daily activities, blue badges, support, care, advice and encouraged to rest and pace throughout our day. I hasten to add not all ME clinics are as up to date with information about this illness, but show how in 6 years of hard work by ME awareness advocates things ARE changing, all be it slowly. This is why International ME awareness is so important.
The last statistics I could find stated that there are 250,000 plus ME/CFS sufferers in the UK alone! So please, if you don’t know what ME/CFS is take a moment to learn, you never know one day you or a loved one may fall foul of this illness.
Thank you for reading