CHAOSTOCOSMOS

Thursday, 9 March 2017

Walk for ME 12 May - 25 May 2017

Walk for ME 12 May - 25 May 2017
Into it's 5th consecutive year of fundraising, Walk for ME aims to raise money for biomedical research into myalgic encephalomyelitis (ME), also referred to by the derrogatory term, Chronic fatigue syndrome (CFS).

The reason it's called Walk for ME - the whole idea is that a friend or family member is doing something that their loved one would love to be able to do but can't because of their illness - is because one of the main symptoms of the condition is exercise intolerance, which brings on Post-exertional malaise (PEM) and intolerable symptoms including pain, fatigue, muscle cramps, headaches, dizziness, nausea and vomiting. 

It has been shown to be harmful for ME sufferers to attempt physical exertion and doing so can cause a permanent reduction in function, even rendering sufferers completely bed-bound, sometimes being tube fed, in approx. 25% of patients

It will be hard to grasp, but I know that I could so easilly find myself in that situation when just standing causes all of the symptoms above, as well as crippling stomach pain and, as I cough and choke and have trouble swallowing frequently at times when I'm especially fatigued - from something really simple, like an hour or so's outing. 

You may know something of my story, but for those who don't, here's the short version:

I've had symptoms of ME at least since contracting Glandular Fever (Infectious mononucleosis) at age 16 in 1973 from which I never recovered. (It may even have begun earlier.) In the early days, I was functioning, but notably more fatigued than I used to be. My GP told me I was imagining it. By the 80's/90's it was clear that I was a lot more fatigued than other people and I knew I had what was then referred to as "Yuppie Flu", but I wasn't about to go and get myself labelled as such.

By 1995, I was no longer able to hold down a job nor earn a living.

Being written off by the medical profession too - a large part of which in this country treats ME as a psychological condition (which it is not) - it took until 2008 to get ANY diagnosis at all, during which time I was treated as a liar and even subjected to threats and bullying as a result of other people's ignorance of this condition.

As time has passed, my functioning has gradually reduced - I fluctuate between 70% and 80% impaired as per the descriptions on this M.E. Disability Scale - and symptoms such as Orthostatic intolerance have become worse and more disabling.

Accidents, other stressful events and further diagnoses of Fibromyalgia, Cervical Spondylosis and Arthritis and all contribute to a worsening of my health overall.

I've now been ill for at least 44 years with no treatment and no cure - can you, honestly, imagine the sufferers of any other condition tolerating such level of neglect - so it's well overdue that this condition get some serious research, which is why I'm choosing to support this fundraising effort, every penny of which goes towards the search for a cure. 

There is currently no accepted cure and no universally effective treatment for ME.

I'm not going to ask you to walk, run, swim, skate, jump, hop, hike, ride or climb on my behalf - although I won't object - but I would like to ask you to consider donating to one or more of the existing Walk for ME 2017 initiatives at JustGiving.

May I perhaps suggest Walkies for ME 2017

And I make no apology for it, but I'm going to nag you about this every couple of weeks between now and the May 12th - 25th event, because it is so important to the quarter of a million or so people in the UK alone who have lives on hold, whose education and careers, relationships and dreams are disrupted while they generally get no effective help. And please share and repost this so we can reach more people. Thank you.

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