• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Advocacy and campaigning: our "how-to" guides


Fine, thank you
The list of our community’s challenges is endless: a severely disabling disease with little recognition, no approved treatments, funding at the bottom of the pile, public and medical ignorance, a spectacular lack of specialists…

We need to act to get what we need, and we need to act together and make the most of our numbers.

And more than one million Americans, 250,000 Britons, and 400,000 Canadians and Australians have ME/CFS. Worldwide prevalence is at least 17 million.

We have the numbers. And although many of us are too sick for conventional advocacy in the physical world, the internet makes effective mass-campaigning possible.

Join the growing force of ME/CFS patients acting together to change the medical landscape!

Check out our pages on:

Let’s take action!
Last edited:


Senior Member
Sth Australia
don't forget that local advocacy is important too. If you are being discriminated against, you can sue or at least try. Its all part of advocacy and getting out there about this. (after too many years of bullshit lawsuits are my current form of advocacy) Not wanting to cause waves.. don't help us right all the wrongs.


Senior Member
I have been thinking about this topic a lot lately. I even asked for a list of current advocacy groups. I have been researching CFS for close to eight years. I have made some pretty great strides in the past couple of months through connecting with two people who I consider geniuses. One is active and one person is retired. I realized in speaking with them the true complexity of the system at play. We really need to have minds like these working on this. We have some very smart people researching. I just think we need some more advanced minds like Rich Vank for example who are able to think out of the box. Honestly I don't have much hope for what these other CFS advocacy groups are doing. I think we need something more aggressive. I think at this point people with CFS aren't all that concerned with medical trails, they just need some answers and understanding. I am thinking about starting a more aggressive CFS research advocacy group.


Rebel without a biscuit

Have you had a look at the MEAction site?

It's not clear to me what you mean by a few things you wrote above.
The two geniuses: what strides are you referring to? Advocacy. I'm sure we'd like to hear more if you have some ideas to share in that regard.

What is your idea of a more aggressive approach?

Also, I think you'll find many people with ME/cfs who are concerned about medical trials as an important step toward getting treatments that work.