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Which Type of Advocacy would be Most Effective for us?

What Type of Advocacy would be Most Effective?

  • ACT-UP & "Wounded Knee 1973" Style Rallies and Sit-ins

    Votes: 3 21.4%
  • Rallies/Testimonies at specific events (e.g. the CFSAC).

    Votes: 3 21.4%
  • Letters/Petitions (@ Congress, Newspapers ...) signed by us as a community.

    Votes: 7 50.0%
  • Letters or Petitions (@ Congress, Newspapers ...) written individually.

    Votes: 5 35.7%
  • Editorials/Articles in Major Newspapers/Outlets.

    Votes: 10 71.4%
  • Documentaries on ME/CFS.

    Votes: 8 57.1%
  • Fiction "Blair-Witch Project" film centered on ME/CFS.

    Votes: 3 21.4%
  • Alliances with Neuroimmune Disorder Advocacy Orgs. (e.g. those for MS).

    Votes: 4 28.6%
  • Researchers & Clinicians form Advocacy Group (ala ILADS in Lyme Disease).

    Votes: 3 21.4%
  • Other -- Please Post and Mention in "Title."

    Votes: 1 7.1%

  • Total voters
Hi all,

Okay so pretty much exactly what the title says: what type(s) of advocacy do you consider would be most effective for us and what are your reasons for that position? Also please cite any sources you would like, including your own experience.

Some Choices:

ACT-UP &/or "Wounded Knee 1973" Style Rallies and Sit-in's
Rallies/Testimonies at specific events (such as the CFSAC).
Letters/Petitions (@ Congress, Newspapers ...) signed by many of us as a community.
Letters or Petitions (@ Congress, Newspapers ...) written individually.
Editorials/Articles in Major Newspapers or News Sources.
Documentaries on ME/CFS.
Fiction "Blair-Witch Project" film on ME/CFS.
Alliances with other Neuroimmune Disorder Advocacy Groups (e.g. those for MS).
Researchers and Clinicians form an Advocacy Group (ala ILADS in Lyme Disease).
Other -- Please Post and Mention in "Title."

Additional (Couldn't Offer Because Maximum of 10 Poll Options):

Blogging (can't stop the Net!).
Intrapersonal (inform all of your family and friends about ME/CFS as best as you are able).
Research Donation Schemes (e.g. somebody offers to match all the donations raised for "Project X(MRV?)."
Someone should sue the Federal Government for (Your Title Here).
HOW COULD YOU FORGET ________?!?! (Please Define Activity in Title of Your Post)​

Thanks everyone and if you could only select four or less that you think would work best (just 1 is also fine).

Additionally if anyone feels I have left something major out then make your own thread (feel free to use the same title, just put (NEW) or something in the title to differentiate) :confused:


Near Cognac, France
ME/CFS Scandal

There is a raft of scientific evidence that ME/CFS is an organic disease, even if there is no consensus on the cause, or complete description of the pathology.

Despite this, ME/CFS is treated with distain by the general public and as a psychiatric illness by those with the power to change its diagnosis and treatment.

Those with the power are politicians.

There is also ample evidence that those in power do not appear to want to understand or treat this illness, for reasons unknown, therefore no amount of scientific evidence, advocacy, appeals to their better nature or sit ins will matter a jot until their hand is forced.

Politicians only respond to their own political self interest, either to jump on a bandwagon or to avoid a political scandal.

In my view, the only way to effect change is to constantly feed evidence of misappropriation, fraud, cover up, tragedies, miscarriages of justice etc to every media outlet possible and to keep a constant drip, drip of stories going until the decision makers see the balance of self interest shifting or alternatively are thrown out.

Sad and cynical I know, but true all the same.


Senior Member
Visit politician's offices and educate their staff about CFS and have one or two specifics they can do -- e.g. this time, help renew the CFS federal advisory committee (which is set to expire this year), fund Centers of Excellence like the WPI to research CFS directly, appoint a permanent head to the CDC CFS program who has extensive experience with CFS in a timely manner, etc.

I've tried to do this with some success (my rep's staff was receptive and helped renew the last charter) but the illness kept me from following up with them on a regular basis. Perhaps healthy supporters who represent us can do this. I think showing up on their doorstep makes it hard for them to ignore -- they receive tons of letter/ e-mails which is fine but this ups the ante. Also, a good way to get influence with little cash is to volunteer to help your local politicians on other campaign issues if your health allows; people are human and more responsive to issues that affect their friends, colleagues, etc.