Crowdfund appeal to educate people with a duty of care towards ME patients

John Mac

John Mac

Senior Member (Voting Rights)
I've been an M.E advocate/campaigner for 4 years and raised over £10k for M.E research with my global social media-driven brand ME Foggy Dog. The brand organically evolved and now it's time for the next step.

I am in the process of setting up a Community Interest Company for the benefit of the M.E/C.F.S community. The business will educate those people who have a duty of care over M.E/C.F.S patients about the true nature of the illness. The M.E/C.F.S community will benefit in 3 ways:

1. Surplus will go to M.E research

2. Patients will receive more appropriate support from healthcare/education professionals and employers.

3. The stigma surrounding the illness will be smashed.
Click to expand...

https://www.crowdfunder.co.uk/tackling-the-mecfs-issue
 
I would need a lot more information about what the money is to be spent on and why this would be a better way of educating doctors than what the existing charities are already doing before donating.

I commend the intention and effort, but it all seems far too vague.
 
Perhaps we could invite Sally to join and discuss it with us?

How does she plan to involve/engage with those who would typically "support" an ME patient.

What literature will they be using?

I can see the benefit. Done well, this could make a real difference.
 
http://meadvocatesireland.blogspot.com/2018/09/complaint-report-offers-hope-for-those.html

I read this a couple of days ago ( have forgotten where but could it be @Keela Too?) and sent it to a family member, and have retrieved it from the email in order to post it here.

I think it demonstrates the acute needs of severe pwme living alone and the desperate nature of the situation in which many live. Christine Fenton, the ME patient, eventually made a complaint which triggered an investigation which produced recommendations which might be of interest to Sally Callow who is doing the crowdfunder.

Sharing information seems a good place to start.
 
So the funds raised by the existing fundraising campaign went to ME Association. I’m wondering whether Sally is working with MEA on this at least the content stands a chance of being useful and possibly using MEA links to medical organisations as well. It would be good to understand about the content production plans but also what distribution and marketing plans are. Wondering if @Russell Fleming knows anything or can find out?
 
If I remember correctly there were posts about Foggy Doggy on the MEA facebook page - people.got in touch offering to "host" him and there were updates in his travels. There might have been a write up in ME Essential the MEA member magazine.

So connections to both IiME & MEA, I think.
 
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