justinreilly
Senior Member
- Messages
- 2,498
- Location
- NYC (& RI)
We really need help from pw/oME! How can we do this most effectively. We can't get done what needs to be done alone. There are many of us and there are a good number of here and elsewhere who donate money, educate themselves and speak out.
Unfortunately, we are so sick and stripped of resources by ME and our persecutors that we can not be effective enough on our own. We have donated millions of dollars over the years to research and CAA. CAA has done a bad job of advocacy. We need our advocacy groups to do a better job and this will take money.
We have made some progress with research. But we need hundreds of millions to go to research every year in order to make real progress toward treatment and cures. MS, cancer and some other diseases that get hundreds of millions a year are still without effective treatments. AIDS is somewhat manageable, it took Billions of dollars a year in research to get there.
A few million a year is not going to cut it and every dollar a pwME donates is probably taking away from her or his treatment.
The whole situation is an emergency, a long emergency, but an emergency nonetheless. We need more resources and help. We need money for WPI and other research and we really need effective advocacy so we can get the hundreds of millions of dollars from governments which we need for research (in addition to the other goals we need to accomplish through advocacy). And advocacy effective enough to do this requires substantial money.
We also need more people to become educated, spread the truth and push for change.
So we need to try to get civilians (pw/oME) involved. Obviously, this is very difficult as the usual suspects have done a great job of making us suspect in the eyes of the public, medicine, and even our own families and friends. Please post your ideas of what groups or individuals might be able to help us and how we can get their help.
Civilians and Fellow Travelers to Rally:
A. Interested People/ "Natural Allies":
i.e. People with Some Interest or Something to Gain (even if it's slight or emotional), from helping pwME
- Friends and Relatives
- AIDS Activists
- Activists and Research Orgs for other Diseases potentially related to HGRVs and other ME-related viruses esp. retroviruses
-- Autism
-- Leukemias and Lymphomas
- Activists and Research Orgs for Diseases with similar pathophysiology and/or suspected causes to ME
-- Fibromyalgia
-- Multiple Sclerosis
-- Autism
-- ME-related cancers eg, NHLymphomas, Chronic Lymphocytic Leukemia, Brain Cancer
- Women's Rights Orgs (ME is not a "woman's disease" but most of the studies say a majority of pwME are women)
-- General Women's Rights Orgs
--- NOW
-- Women's Health Orgs
- Activists-at-large looking for a good cause
- Celebrities or other pwME or friends and relatives of pwME who have followers or fans (we seem to be one of the few diseases where most well-known pwME have generally not made a public campaign over it)
-- http://en.wikipedia.org/wiki/List_of_people_with_chronic_fatigue_syndrome
-- http://en.wikipedia.org/wiki/Category:People_with_chronic_fatigue_syndrome
B. Our Personal Contacts/ Connections with Influence:
i.e. Influential People to which You have some Connection, even if Remote (though they not have a self-interest in helping pwME)
- Medical:
-- activists for other diseases, medical doctors (especially those who like to publish or are involved in medical 'societies' such as AMA), med school professors, administrators or board members, teaching hospital administrators or board members, biomed scientists, psychologists or
-- drug company execs.
- Media:
-- Reporters, press and journal editors and publishers, tv or radio execs, documentary filmmakers or producers, film students looking for a documentary project, bloggers
-- celebrities or anyone else who has their own "tribe" of fans, followers, listeners or readers, or
-- health PR people,
- Non-profit:
-- Directors or officers of charitable foundations, current or potential donors (esp., but not necessarily wealthy), activists-at-large, fundraisers.
- Government:
-- Members of congress, congressional staffers, government health agency administrators, health care lobbyists, people with political favors to cash-in, or,
-- if you live in a state with a senator or a district with a representative on a committee which budgets NIH and CDC, anyone (they can forward emails and sign petitions to the Senator or Rep and/or accompany you to a meeting with a congressional staffer for a show of support).
Other Civilians:
Bernadine Healy, MD, former NIH Director (hired Francis Collins and accused government of a conspiracy to stifle vaccine/autism research)
http://www.youtube.com/watch?v=rHxqTyAxZZE&feature=feedf
(went to my high school; will try to contact her at some point -Justin R.)
Richard Blumenthal, atty gen of CT (brought suit against Lyme Org infested by insurance doctors)
http://www.ct.gov/ag/cwp/view.asp?a=2178&q=295440
Tactics
- Soliciting donations for WPI (or any other effective ME org)
-- "Birthday Wishes"
--- http://wishes.causes.com/
- YouTube videos (short, original and most of all funny are good for getting views)
Resources
Fundraising (the art of begging)
Books
Writing for a Good Cause: The Complete Guide to Crafting Proposals and Other Persuasive Pieces for Nonprofits [Paperback]
Joseph Barbato (Author), Danielle Furlich (Author)
4.8 out of 5 stars (12 customer reviews)
$11.55
http://www.amazon.com/Writing-Good-Cause-Persuasive-Nonprofits/dp/0684857405/ref=pd_sim_b_30
Effective Fundraising for Nonprofits: Real-World Strategies That Work [Paperback]
Ilona Bray J.D. (Author)
4.7 out of 5 stars (33 customer reviews)
$18.66
http://www.amazon.com/gp/product/14...&pf_rd_t=101&pf_rd_p=470938631&pf_rd_i=507846
How to Write Successful Fundraising Letters, with CD (The Jossey-Bass Nonprofit Guidebook Series) [Paperback]
Mal Warwick (Author)
4.8 out of 5 stars (16 customer reviews)
$24.39
http://www.amazon.com/gp/product/0787999083/ref=ox_sc_act_title_4?ie=UTF8&m=ATVPDKIKX0DER
Unfortunately, we are so sick and stripped of resources by ME and our persecutors that we can not be effective enough on our own. We have donated millions of dollars over the years to research and CAA. CAA has done a bad job of advocacy. We need our advocacy groups to do a better job and this will take money.
We have made some progress with research. But we need hundreds of millions to go to research every year in order to make real progress toward treatment and cures. MS, cancer and some other diseases that get hundreds of millions a year are still without effective treatments. AIDS is somewhat manageable, it took Billions of dollars a year in research to get there.
A few million a year is not going to cut it and every dollar a pwME donates is probably taking away from her or his treatment.
The whole situation is an emergency, a long emergency, but an emergency nonetheless. We need more resources and help. We need money for WPI and other research and we really need effective advocacy so we can get the hundreds of millions of dollars from governments which we need for research (in addition to the other goals we need to accomplish through advocacy). And advocacy effective enough to do this requires substantial money.
We also need more people to become educated, spread the truth and push for change.
So we need to try to get civilians (pw/oME) involved. Obviously, this is very difficult as the usual suspects have done a great job of making us suspect in the eyes of the public, medicine, and even our own families and friends. Please post your ideas of what groups or individuals might be able to help us and how we can get their help.
Civilians and Fellow Travelers to Rally:
A. Interested People/ "Natural Allies":
i.e. People with Some Interest or Something to Gain (even if it's slight or emotional), from helping pwME
- Friends and Relatives
- AIDS Activists
- Activists and Research Orgs for other Diseases potentially related to HGRVs and other ME-related viruses esp. retroviruses
-- Autism
-- Leukemias and Lymphomas
- Activists and Research Orgs for Diseases with similar pathophysiology and/or suspected causes to ME
-- Fibromyalgia
-- Multiple Sclerosis
-- Autism
-- ME-related cancers eg, NHLymphomas, Chronic Lymphocytic Leukemia, Brain Cancer
- Women's Rights Orgs (ME is not a "woman's disease" but most of the studies say a majority of pwME are women)
-- General Women's Rights Orgs
--- NOW
-- Women's Health Orgs
- Activists-at-large looking for a good cause
- Celebrities or other pwME or friends and relatives of pwME who have followers or fans (we seem to be one of the few diseases where most well-known pwME have generally not made a public campaign over it)
-- http://en.wikipedia.org/wiki/List_of_people_with_chronic_fatigue_syndrome
-- http://en.wikipedia.org/wiki/Category:People_with_chronic_fatigue_syndrome
B. Our Personal Contacts/ Connections with Influence:
i.e. Influential People to which You have some Connection, even if Remote (though they not have a self-interest in helping pwME)
- Medical:
-- activists for other diseases, medical doctors (especially those who like to publish or are involved in medical 'societies' such as AMA), med school professors, administrators or board members, teaching hospital administrators or board members, biomed scientists, psychologists or
-- drug company execs.
- Media:
-- Reporters, press and journal editors and publishers, tv or radio execs, documentary filmmakers or producers, film students looking for a documentary project, bloggers
-- celebrities or anyone else who has their own "tribe" of fans, followers, listeners or readers, or
-- health PR people,
- Non-profit:
-- Directors or officers of charitable foundations, current or potential donors (esp., but not necessarily wealthy), activists-at-large, fundraisers.
- Government:
-- Members of congress, congressional staffers, government health agency administrators, health care lobbyists, people with political favors to cash-in, or,
-- if you live in a state with a senator or a district with a representative on a committee which budgets NIH and CDC, anyone (they can forward emails and sign petitions to the Senator or Rep and/or accompany you to a meeting with a congressional staffer for a show of support).
Other Civilians:
Bernadine Healy, MD, former NIH Director (hired Francis Collins and accused government of a conspiracy to stifle vaccine/autism research)
http://www.youtube.com/watch?v=rHxqTyAxZZE&feature=feedf
(went to my high school; will try to contact her at some point -Justin R.)
Richard Blumenthal, atty gen of CT (brought suit against Lyme Org infested by insurance doctors)
http://www.ct.gov/ag/cwp/view.asp?a=2178&q=295440
Tactics
- Soliciting donations for WPI (or any other effective ME org)
-- "Birthday Wishes"
--- http://wishes.causes.com/
- YouTube videos (short, original and most of all funny are good for getting views)
Resources
Fundraising (the art of begging)
Books
Writing for a Good Cause: The Complete Guide to Crafting Proposals and Other Persuasive Pieces for Nonprofits [Paperback]
Joseph Barbato (Author), Danielle Furlich (Author)
4.8 out of 5 stars (12 customer reviews)
$11.55
http://www.amazon.com/Writing-Good-Cause-Persuasive-Nonprofits/dp/0684857405/ref=pd_sim_b_30
Effective Fundraising for Nonprofits: Real-World Strategies That Work [Paperback]
Ilona Bray J.D. (Author)
4.7 out of 5 stars (33 customer reviews)
$18.66
http://www.amazon.com/gp/product/14...&pf_rd_t=101&pf_rd_p=470938631&pf_rd_i=507846
How to Write Successful Fundraising Letters, with CD (The Jossey-Bass Nonprofit Guidebook Series) [Paperback]
Mal Warwick (Author)
4.8 out of 5 stars (16 customer reviews)
$24.39
http://www.amazon.com/gp/product/0787999083/ref=ox_sc_act_title_4?ie=UTF8&m=ATVPDKIKX0DER
