Thursday, July 27, 2017

Day 22 Tips and Tricks for Sofa Heroes: Advocacy and Support

Reuters photo from a #MillionsMissing Protest for ME/CFS Awareness
Hi Everyone!
Following up on both research and films on ME/CFS I'm here to share a few advocacy groups set up for fundraising and awareness about the illness.

It may seem strange that while I'm fundraising for The Optimum Health Clinic I'm also sharing information about other groups - but in my mind we're all in this together and a rising tide floats all boats. It's important for us as spoonies to have as much information we have about what's going on in the world to solve this horrendous illness.

The biggest hurdle for ME/CFS right now is the misunderstanding of the illness, and the stigmas that keep the illness so "invisible".  These advocacy groups try to bring visibility to an illness that keeps people indoors, in bed, in the dark, and unable to go out into the world to show people just how sick we are - even when we can go out, we look mostly normal.

ME/CFS is so serious an illness it has been called the "new polio", a cousin to multiple-sclerosis. It affects multiple systems in the body and has clear neuro-immunological and endocrine clinical dysfunctions. When I first got ill, my doctor was baffled by my test results, which looked normal, despite me looking like I was experiencing late stage HIV/AIDS symptoms.

Despite the enormous financial cost to communities due to how many are too ill to work, it is incredibly difficult for people with ME/CFS to get disability support and community support for their illness because it is so misunderstood.  There aren't even very many medical professionals that consider ME/CFS (or can give any kind of treatment or authorize testing) while undergoing treatment for anything else because of how little is understood about it.  These groups are all working to improve the general understanding and research for ME/CFS.

All of these sites have excellent info about what is ME and how it impacts both patients and the communities they live in.

#MEAction leading the #MillionsMissing campaign

Action for M.E.
Invest in ME - My friend Jen is currently doing a fun #dressForME fundraiser
The Open Medicine Foundation currently doing a worldwide tour through 2017 (They've run campaigns like #UndiesOnTheOutside and #KissMEGoodbye)



If you want to join a support group or a Facebook group talking about news in research here are a few I like:

Race to Solve ME/CFS - a very well moderated group presenting the latest research and advocacy information

Invest in ME group - updates on fundraising and research

The Optimum Health Clinic Community - people using integrative techniques to ease symptoms and support in living with ME/CFS with weekly videos from the clinic on aspects of ME/CFS and the healing process

To Be a Better ME a very friendly group about patients providing other patients with support for everyday life with ME/CFS/Fibromyalgia.

I don't know much about this one, but have seen many of my fellow PWME (patients with myalgic encephalomyalitis) talk about Phoenix Rising support.

And as always, The Optimum Health Clinic (based in London but works with people all over the world) has an enormous library of resources on their website as well.

If you're enjoying these blog posts please help me raise money for The Optimum Health Clinic Foundation Thank you!
 Donate to my JustGiving Page for The OHC


Go to Day 1 for the full Table of Contents of 30 Days of Tips and Tricks for Sofa Heroes

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