Severe ME day: August 8th 2018

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Eagles

Senior Member (Voting Rights)
Phoenix Rising: August 8th, 2018: Understanding and Remembrance Day for Severe ME

https://phoenixrising.me/archives/29564

August 4, 2018

Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.

Can you read these words I’ve written on this page? Good. Then you know that I am NOT an example of the extremely ill with ME/CFS. Because if I were, you wouldn’t see or hear me. I’d be behind a closed door in my bed, trying to block out any sound or light.

Even if you were in the same house with such a person you might not see or hear them. They are likely busy focusing on breathing in and out. You’d be surprised how much work that can be when you’re this ill. They are trying to live through the next second, minute, hour … day … year … It takes everything they’ve got.

I have never been this sick, more fortunate for me. But don’t kid yourself. There are so many of these invalids holding on to the shreds and threads of survival. In fact, 25% of those with ME/CFS suffer from its most severe forms. Some are able to depend on a caregiver. Many more are on their own, toughing it out.

Sophia Mirza had severe ME/CFS and died in 2005 when she was only 32 years old. Her birthday, August 8, was chosen as Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance by the 25% ME Group in 2013. On this day we honor Sophia and those others with ME/CFS who live alone in darkened and unnaturally quiet isolation…
 
I do have very severe ME and a surprising number of us do engage in some way, on Twitter, forums, blogs, even though we might do little else. Being on here doesn’t mean I’m not very severe.
It’s aLso inaccurate to say 25% suffer the mOST severe forms. The 25% covers those who might be able to leave the house occasionally and largely self care to the completely dependent and completely bedridden. It’s actually quite a wide range of function and I can feel little similarity with those at the upper end who blur in with moderate to severe, as someone high function in employment might not relate to bordering on worklessness , I actually think it’s harder to relate as you become more severe as the losses are so profound, someone housebound probably struggles to imagine not being able to move or speak but it’s still all “severe”.

I’d actually have thought a large percent of the 25% are reliant on a caregiver for at least some forms of house work, shopping & food preparation. Being reliant on care and others brings a whole host of additional issues.

I personally prefer action to being honoured, hounouring can be a one minute remembrance whilst the rest of the time we are left to it. There still is shocking lack of advocacy for the severe, research on the severe, medical education and expertise regarding severe M.E. and safe, knowledgeable care for us. The 25% group doesnt have the resources and there isn’t activism generally, in fact I’ve no idea even what’s supposed to be happening, if anything this August 8th, as opposed to May12th. I would draw attention to, as I did last year, the fact that Lily who invented this Remembrance Day herself has subsequently died, I don’t know the circumstances but I do know that prior to death her condition was such that she was in so much pain her clothes had to be cut off, not changed. Lily’s story is on invest in MEs website.
 
I ;m struggling to write at moment .severe /very severe. but wanted to highlight I started a thread last week for a the silence challenge for severe me for the 25% group
if anybody felt able to donate even one £ would be great. it is in the fundraising thing sorry :( :ill: all typed out now
 
The Independent using the clickbait tactic, other than that it looks like they used the ME Associations press release pretty much intact.
A teenager was left with the devastating illness ME after a parasite burrowed in her eye.

Skye Wheeler, 19, is housebound due to the incurable illness which leaves her suffering from unrelenting exhaustion and profound pain.

She fell ill when she was 14 after a parasite (Acanthamoeba keratitis) burrowed in her cornea and ate away at her eye – where it is still ‘sleeping’ – before the condition developed into myalgic encephalomyelitis (ME).


Ms Wheeler spoke out to raise awareness of the often-misunderstood condition to mark Severe ME Awareness Day.
Click to expand...
https://www.independent.co.uk/news/health/me-parasite-burrowed-eye-skyle-wheeler-a8482746.html
 
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