Kickstarting ME/CFS Advocacy - Jen Brea's ME Action Site

[Cort]

No community needs more action than the ME/CFS community. It gets less research funding than 97% of other disorders at the NIH. Hay fever gets more money and so do a score of diseases with 20 times fewer patients.

There's a problem, though. ME/CFS is pretty action limiting. So how to advocate effectively with an action limiting disease? You make advocating as easy and simple as possible. You bring together all advocacy efforts under one roof. You create something like #MEAction - Jenn Brea's ambitious project to build a complete portal for ME/CFS advocacy.

Want to create a petition? Crowdfund for a study? Promote an ME Event or learn how advocate effectively? How about organizing a local or national (or an international) event? The sky is your limit here. Ultimately it's all about taking action..#MEAction.

#MEAction already has over 20 actions ranging from a major petition to Congress to Crowdfunding for the Severely Ill project to Commenting on the NIH'S Strategic Plan.

I think this one-stop advocacy shop is going to bring this sometimes, so splintered community together. We're going to find more common ground, know each other better and accomplish more. Ultimately we all want the same things - more research, better treatments and better access to treatments.

[fright]

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I suggest that the first action anyone joining the site might take is to sign the Petition to Congress for funding equality for ME/CFS.

There's lots to do and advocacy takes work. Participating in that work might be the best investment in our future that each of us can make. #MEAction's is making that work easier and more effective.

• Check out #MEAction here.

 

[Lianne Sparling]

As a fibromyalgia sufferer, I wish there was an international umbrella fundraising initiative that covered both conditions! As stated in the July 27th article, fibromyalgia is below ME/CFS in funding, yet this blog begins with saying no other group gets less funding? I'm frustrated because I also suffer from a neurological movement disorder called Essential Tremor (ET), which is 8x more prevalent than Parkinson's but doesn't get anywhere near the funding dollars either. ET at least has the International Essential Tremor Organization (IETF), an educative advocacy group that has helped make great strides in this century, involving researchers from around the world. This would be a great model for FM/CFS/ME. It sucks that I got hit with 2 conditions that medicine does not know the exact cause, or how to treat, or even acknowledged by health practitioners as debilitating and a daily struggle for a quality life.

 

[Katie]

This is excellent news! I tried connecting to Columbia University to make a donation but the site was down. So I'll try again later.
Everyone of us can do something even if it's from our own home and may seem small but with joint efforts the message will get out there.

 

[Cort]

As a fibromyalgia sufferer, I wish there was an international umbrella fundraising initiative that covered both conditions! As stated in the July 27th article, fibromyalgia is below ME/CFS in funding, yet this blog begins with saying no other group gets less funding? I'm frustrated because I also suffer from a neurological movement disorder called Essential Tremor (ET), which is 8x more prevalent than Parkinson's but doesn't get anywhere near the funding dollars either. ET at least has the International Essential Tremor Organization (IETF), an educative advocacy group that has helped make great strides in this century, involving researchers from around the world. This would be a great model for FM/CFS/ME. It sucks that I got hit with 2 conditions that medicine does not know the exact cause, or how to treat, or even acknowledged by health practitioners as debilitating and a daily struggle for a quality life.

Fibro gets less money per patient but it gets about twice the total funding of ME/CFS (because FM is so much more prevalent).

Thanks for the ET tip! I will look into it.

Good luck with both of them...

 

[Cort]

This is excellent news! I tried connecting to Columbia University to make a donation but the site was down. So I'll try again later.
Everyone of us can do something even if it's from our own home and may seem small but with joint efforts the message will get out there.

Yes, indeed! If we can get everyone involved we have the numbers.