United Kingdom: ME Association news

Trish said:
I'm not on X. What was the post people were responding to? What has the MEA been doing?
Click to expand...


The MEA tweet suggested that pME could colour in a flower and send it to a friend - and the MEA provided colouring sheets with simple outlines of flowers etc for pwME to do the colouring.

All twitter responses were scathing, telling the MEA that we need urgent and strong representation, not playschool games.

The ME Association have now removed their tweet, only the replies remain.



Carole Bruce replied to the MEA:

"Please stop treating us as Primary School children. We are very ill people who don’t get the treatment, attention, funding we so desperately need. We need our charities to advocate for us seriously, #ME patients are dying I’ve spent 33 years in bed with ME. I don’t want a flower"

.
 
InitialConditions said:
Here is a link to the 'campaign': https://meassociation.org.uk/campaigns/seeds-of-hope/
Click to expand...
Thanks, I've just been looking at it.

Here's some of the text:

Living with ME/CFS/Long Covid can feel frightening and uncertain. But you are not alone. There are so many people who see you and who really care about you.
Right now, there are researchers pouring their energy and determination into understanding the causes of ME/CFS/Long Covid, searching for answers and treatments that could change lives. Our advocates and carers working to ensure we all have equal access to specialist ME/CFS care that follows the latest NICE guidelines. Our ME Connect support line has people at the end of the phone ready to listen, believe you and support you.
Seeds of Hope is a reminder that even in the hardest times, something small can still grow. We won't pretend that everything will be easy, but what we can promise is this: you’re not alone.

How to take part​

There is no single way to be part of Seeds of Hope. Whether you are at home, in bed, outdoors or online, your contribution is just as meaningful as anyone else's. Take part in whatever way feels right for you and at whatever pace feels manageable. But, as always, your health is paramount to us and we want you to take the utmost care. If taking part feels out of reach, please don't worry. You are thought of, you are cared for and you are every bit as much a part of this as anyone else. Simply being part of our community means you are part of Seeds of Hope too.
Click to expand...

It goes on to talk about growing something on a windowsill and running an open garden if you have one.

Then there's the bit where colouring in comes in including the primary school level activity sheets.

There's even a virtual sunflower garden to participate in.

And of course a request for donations.

Maybe this will appeal to a few people, but it does seem to me to be pretty patronising and a poor use of charity funds to make such a project of it and even provide seeds and activity packs.

I googled Seeds of Hope and the first thing that came up was a small group running a project in their local area specifically as a mental health project to provide activities growing things in groups. This sort of project is fine - local and appropriate for some with some mental health problems, not for ME/CFS.

It seems a misdirection of charity funds for a national charity for an illness that is not a mental illness and is so badly served, with so many urgent needs for advocacy, services and research.
 
Last edited:
It’s giving something about us, without us. It really feels like a healthy person has come up with this and made it “easy” for the ME’s.

Be part of a community by doing a thing.
Nobody communicates with you.
You don’t communicate with anybody.

I’m not getting the sense of a community, and I have to do a thing. I could achieve the same by….not doing the thing.

Yay colouring sheets! All I have to do is
-read the article
-get someone to print the sheets at a printer
-get someone to get me some colouring pencils
-bugger up my hands and arms doing unnatural gripping of pencil for some time, and repeated strokes to colour (can feel my trunk muscles tensing just thinking of the effort)
And I get…a primary school picture!

This is sarcasm by the way
 
InitialConditions said:
I'm glad numerous people on X have called this out. There really is a widening gulf between AfME and MEA these days.
Click to expand...

There really is! One organisation is funding gamechanging medical research, getting their message out on the BBC, and pushing the DHSC on the delivery plan. The other one wants to send us a packet of seeds and a colouring sheet.
 
Lou B Lou said:
Carole Bruce replied to the MEA:

"Please stop treating us as Primary School children. We are very ill people who don’t get the treatment, attention, funding we so desperately need. We need our charities to advocate for us seriously, #ME patients are dying I’ve spent 33 years in bed with ME. I don’t want a flower"
Click to expand...
Holy crap it's literally a children's coloring page.
Carole Bruce replied to the MEA:

"Please stop treating us as Primary School children. We are very ill people who don’t get the treatment, attention, funding we so desperately need. We need our charities to advocate for us seriously, #ME patients are dying I’ve spent 33 years in bed with ME. I don’t want a flower"
Click to expand...
Very measured response, I would not be this polite. This organization is a disaster.
 
You must log in or register to reply here.
Back
Top Bottom