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Getting Help from Civilians

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).

Senate Committee on Health, Education, Labor and Pensions ("HELP")

http://help.senate.gov/

Democrats by Rank
Tom Harkin (IA)
Barbara A. Mikulski (MD)
Jeff Bingaman (NM)
Patty Murray (WA)
Bernard Sanders (I) (VT)
Robert P. Casey, Jr. (PA)
Kay R. Hagan (NC)
Jeff Merkley (OR)
Al Franken (MN)
Michael F. Bennet (CO)
Sheldon Whitehouse (RI)
Richard Blumenthal (CT)

Republicans by Rank
Michael B. Enzi (WY)
Lamar Alexander (TN)
Richard Burr (NC)
Johnny Isakson (GA)
Rand Paul (KY)
Orrin G. Hatch (UT)
John McCain (AZ)
Pat Roberts (KS)
Lisa Murkowski (AK)
Mark Kirk (IL)


Senate Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Contact Information
Majority (Democrats) Minority (Republicans)
Committee Office: Dirksen Senate Office Building 184 Hart Senate Office Building 123
Committee Phone: 202-224-7288 202-224-7230
Committee FAX: 202-224-7914 202-224-1360

Committee Email: Not Currently Available (Entire Committee)
Committee WWW Homepage: http://appropriations.senate.gov/sc-labor.cfm (Entire Committee)
Parent Committee: Senate Committee on Appropriations

Committee Membership

Majority Members (Democrats)
Member Name DC Phone DC FAX

Tom Harkin (D-IA) [Chairman] 202-224-3254 202-224-9369
Dan Inouye (D-HI) 202-224-3934 202-224-6747
Herb Kohl (D-WI) 202-224-5653 202-224-9787
Patty Murray (D-WA) 202-224-2621 202-224-0238
Mary Landrieu (D-LA) 202-224-5824 202-224-9735
Dick Durbin (D-IL) 202-224-2152 202-228-0400
Jack Reed (D-RI) 202-224-4642 202-224-4680
Mark Pryor (D-AR) 202-224-2353 202-228-0908
Barbara Mikulski (D-MD) 202-224-4654 202-224-8858
Sherrod Brown (D-OH) 202-224-2315 202-228-6321

Minority Members (Republicans)

Member Name DC Phone DC FAX

Richard Shelby (R-AL) [Ranking Member] 202-224-5744 202-224-3416
Thad Cochran (R-MS) 202-224-5054 202-224-9450
Kay Bailey Hutchison (R-TX) 202-224-5922 202-224-0776
Lamar Alexander (R-TN) 202-224-4944 202-228-3398
Ron Johnson (R-WI) 202-224-5323 202-224-2725
Mark Kirk (R-IL) 202-224-2854 202-228-3333
Lindsey Graham (R-SC) 202-224-5972 202-224-3808
Jerry Moran (R-KS) 202-224-6521 202-228-1265


House Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Contact Information Majority (Republicans) Minority (Democrats)
Committee Office: Longworth House Office Building 2358-B Rayburn House Office Building 1016
Committee Phone: 202-225-3508 202-225-3508
Committee FAX: Unlisted Unlisted
Committee Email: Not Currently Available (Entire Committee)
Committee WWW Homepage: http://appropriations.house.gov/ind...tTheCommittee.Subcommittees&SubcommitteeId=11 (Entire Committee)
Parent Committee: House Committee on Appropriations


Committee Membership

Majority Members (Republicans)

Member Name DC Phone/DC FAX

Dennis Rehberg (R-MT) [Chairman] 202-225-3211 202-225-5687
Jerry Lewis (R-CA) 202-225-5861 202-225-6498
Rodney Alexander (R-LA) 202-225-8490 202-225-5639
Jack Kingston (R-GA) 202-225-5831 202-226-2269
Kay Granger (R-TX) 202-225-5071 202-225-5683
Mike Simpson (R-ID) 202-225-5531 202-225-8216
Jeff Flake (R-AZ) 202-225-2635 202-226-4386
Cynthia Lummis (R-WY) 202-225-2311 202-225-3057

Minority Members (Democrats)

Member Name DC Phone DC FAX

Rosa L. DeLauro (D-CT) [Ranking Member] 202-225-3661 202-225-4890
Nita M. Lowey (D-NY) 202-225-6506 202-225-0546
Jesse L. Jackson, Jr. (D-IL) 202-225-0773 202-225-0899
Lucille Roybal-Allard (D-CA) 202-225-1766 202-226-0350
Barbara Lee (D-CA) 202-225-2661 202-225-9817


House Subcommittee on Health

Contact Information
Majority (Republicans) Minority (Democrats)
Committee Office: Longworth House Office Building 1102 Longworth House Office Building 1139E
Committee Phone: 202-225-3625 202-225-4021
Committee FAX: 202-225-5680
Committee Email: Not Currently Available (Entire Committee)
Committee WWW Homepage: http://waysandmeans.house.gov/Subcommittees/Subcommittee/?IssueID=4615 (Entire Committee)
Parent Committee: House Committee on Ways and Means

Committee Membership

Majority Members (Republicans)

Member Name DC Phone DC FAX

Wally Herger (R-CA) [Chairman] 202-225-3076 202-226-0852
Sam Johnson (R-TX) 202-225-4201 202-225-1485
Paul Ryan (R-WI) 202-225-3031 202-225-3393
Devin Nunes (R-CA) 202-225-2523 202-225-3404
Dave Reichert (R-WA) 202-225-7761 202-225-4282
Dean Heller (R-NV) 202-225-6155 202-225-5679
Peter Roskam (R-IL) 202-225-4561 202-225-1166
Jim Gerlach (R-PA) 202-225-4315 202-225-8440
Tom Price (R-GA) 202-225-4501 202-225-4656

Minority Members (Democrats)

Member Name DC Phone DC FAX

Pete Stark (D-CA) [Ranking Member] 202-225-5065 202-226-3805
Mike Thompson (D-CA) 202-225-3311 202-225-4335
Ron Kind (D-WI) 202-225-5506 202-225-5739
Earl Blumenauer (D-OR) 202-225-4811 202-225-8941
Bill Pascrell, Jr. (D-NJ)

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
 

5150

Senior Member
Messages
360
hi justin,

of course you are right about this. after today's non-action in Bethesda, it's more obvious. we, and WPI, are hung out to dry. hopefully it will change, but it didn't today and it could have, and it should have.

in answer to your question re how to best get help from outside our ranks, my thinking is that the AIDS activists are well equipped for this. God knows they went out and fought, and many of us were, and still are, right there beside them. their cause is rolling along, and now we need some help. It's about life and death for us,too.

maybe i can add more later; i'm exhausted right now.

adding: does WPI have an official Funds Raising office, someone specifically dedicated to that work?
apply to Bill and Melinda Gates Foundation for grant support
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
FRIENDS AND CONTACTS:

I am not one to evangelize and push people to pay attention to and donate money to my cause, but ours is such a crisis situation that we need to really reach out and ask for help from friends and contacts. You can (1) educate them as members of the public or a profession relevant to ME, (2) ask them for money, (3) ask them to help out (eg signing petitions, voting for a charity in a contest, sending pre-written emails to their representatives and agency administrators or volunteering skilled or unskilled labor for advocacy).

I have not been able to have much of a social life while sick, so I have lost touch with most people. I am trying to recultivate a few old friendships; but I think the point has come where I'm just going to put aside 'pride' and 'etiquette' and send out a mass email to everyone in my addressbook and messages to all social-network 'friends' to help out (by donating to WPI).

I will explain that they may not have spoken to me in years or even remember me but, this is the situation and please help. This is not the most comfortable thing to do, but if pwME did this with all their contacts, to just be "shameless" in asking for donations to the best orgs (which to me right now is WPI) I think we could make a lot faster progress. It can't hurt and who knows, it could help a lot. I don't follow the WPI fundraising threads, so apologies if this is an old idea (worth a try anyway, though, imo).

If you want to be a 'shameless' advocate for ME and our best ME orgs, please post here and we all can have a conversation! It would be exciting and fun to reconnect with old acquaintences and friends and do some real good for the best ME orgs! It's so frustrating being powerless and seemingly unable to change things fast enough; this could be a refreshing antidote.

Also think especially about what friends or acquaintences or even tangential connections you have to people who may be able to help with influence, expertise, money or other support, including a referral to someone they know who might be able to help.

Do you have any connection, even tangentially, to people who might be able to help? For example, I plan to contact people in positions of influence who are friends of friends, professors I had many years ago, active in volunteer organizations I used to be involved in or even people who just went to my high school. Many may ignore me, but it will be worth it even if I just help educate a few people a bit.

Do you have any (even remote) connection to:

Medical:
- 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,

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).
[I wlll post here later which states and districts those are].

Non-profit:
- Directors or officers of charitable foundations, current or potential donors (esp., but not necessarily wealthy), activists-at-large, fundraisers.


Let's talk about how to contact them and what to say and cheer each other on here!


AIDS ACTIVISTS:

Someone (Marty?) has posted to ACT-UP forums and contacted ACT-UP NY. I think long-time AIDS activists who are bored now that there's nothing to do (ok, that's an exaggeration, but you know what I mean) would be very helpful to us.

Does anyone know any AIDS activists they can contact?


ACTIVISTS FOR OTHER DISEASES:

Activists for other diseases could help us with subject-matter knowledge; eg how to lobby NIH and Congress for change and funding on a disease.

Alliances with activists for similar and neglected diseases, such as FM, MCS and MS, could be especially helpful. PANDORA and CAA have done a bit of this. (btw, I don't hear that much about FM activism even though there are about 4 times as many pwFM as pwME and they seem to be similarly neglected and persecuted. Wonder why this is.)

A potential challenge of dealing with activists for other diseases is that they may feel in competition with us for a share of NIH and public attention and dollars, so that might inhibit their cooperation.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I tried the Terrence Higgins Trust in London but they were unwilling to help. Saw the Actup thread that Jim started for his protest. We don't have an Actup chapter in London any longer. When I was a member many years ago, they were unwilling to accept another disease as they wanted to focus on what were their immediate priorities. Not sure how many old AIDS activists would be interested enough to help in any meaningful way.

This is a great thread. I'm very isolated now but have been working my contacts for years.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I don't read the WPI fundraising threads. Anyone know of anyones with good advice on soliciting donations from friends, family and civilians? If I don't hear I will check on my own at some point.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
There are people asking for donations for their birthday's (WPI fundraising). Mainly on Facebook.

p.s. In the UK we also tried the "Human Rights" organisations and things like Mdecins Sans Frontires (Doctors Without Borders
http://www.msf.org.uk/

p.p.s. so many PWME seem to have close relatives in medicine and these people in particular are being abandoned by them/families.
 
Messages
35
I think there are some things we can do inexpensively that would help focus people.

First of all - we need a famous spokesperson.
What about sending autograph requests to your favorite movie / tv stars and including a letter about your me/cfs and how tv / movies are the only thing you can do? I have done this and at the very least have gotten some fun autographs. Maybe some star will have a family member with cfs/me and be willing to help. They won't unless we ask!

Next - wear awareness bracelets. Individual bracelets can be ordered at 24hourwristbands.com. I just did this. I ordered 6 blue wristbands with ''Solve CFS/ME" engraved on the band. (Our color is blue.) You can order as few as 1 wristband and as many as you want.

Produce youtube videos. Make them funny - people will watch funny. If anyone has any songwriting skills - produce a perky cfs/me song and maybe our song will be as big as the Numa Numa song...You never know!

Connect the dots. Since many cfs/me patients eventually end up with cancer talk w/ cancer fundraisers etc.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I think there are some things we can do inexpensively that would help focus people.

First of all - we need a famous spokesperson.
What about sending autograph requests to your favorite movie / tv stars and including a letter about your me/cfs and how tv / movies are the only thing you can do? I have done this and at the very least have gotten some fun autographs. Maybe some star will have a family member with cfs/me and be willing to help. They won't unless we ask!

Next - wear awareness bracelets. Individual bracelets can be ordered at 24hourwristbands.com. I just did this. I ordered 6 blue wristbands with ''Solve CFS/ME" engraved on the band. (Our color is blue.) You can order as few as 1 wristband and as many as you want.

Produce youtube videos. Make them funny - people will watch funny. If anyone has any songwriting skills - produce a perky cfs/me song and maybe our song will be as big as the Numa Numa song...You never know!

Connect the dots. Since many cfs/me patients eventually end up with cancer talk w/ cancer fundraisers etc.

I think these are good ideas. I put most of them up at the end of the first post where I will keep a list of ideas.

I agree Youtube is definitely important. Funny is good, yes. Most of youtube views are in the nature of taking a few minutes break from work, so a lighthearted funny vibe is very good. Also I think originality (and brevity) can get eyeballs.

The birthday WPI donation idea is really great. Thanks for reminding me about that.

The cancer orgs, esp. ME related cancers- specific leukemias and lymphomas are important for us to contact and motivate/ make our case. People with a specific interest that would be benefited by funding XMRV and/or ME. This interest by cancer orgs has started to develop very slowly as I understand it. Important to push it along.

More generally saying, as does the "What about ME?" trailer and Mary Schweitzer, "Why should you care? Because you (blood recipient, military personnel, sexually active person or just general member of the public- if airborne or in vaccines) and your child could be next."

The cancer and 'you could get it too' ideas is along the lines of what i, at least, am thinking about in this thread- there has been talk and people taking action to raise awareness (with socks, bracelets, t-shirts and vids etc.) which are very important. What I'm thinking about here is how to get to the next step of actually getting real help from healthy people- cold hard money and cold hard advocacy. This is probably going to be very challenging to do but I really think it's our only real hope. We can't do it alone.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Fundraising info sources

fwiw, here are some apparently good books on fundraising. I realize this isn't everyone's cup of tea to read a whole book on a topic like this, but I like to get books and read and look them over since I hate staring at the computer screen so I hate reading on the web. They all are supposedly good; I got the first one because it is cheapest.

That said, does anyone know any good websites with good info on how to solicit donations/ fundraise in case anyone's interested?

Are there any sample fundraising letters for WPI out there?


Books on Fundraising:

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
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I think fundraising may be the most productive thing we can do in relation to pw/oME. 'Differentiating' our cause from the solicitation 'clutter' is important, imo. Here's a great example; the campaign to cure compact crampomitosis, below. It is attention-getting and funny/whimsical.

I think doing something like this to raise money for WPI or your favorite org would be really effective because it 'leaps over' our biggest barrier: confusion and doubt about ME. If you get someone's attention and then make them smile they will probably be able to relate to us more, than if they just get a plea for money for an illness that they may not be 'sure' about (because they've been lied to by the charlatans).

http://www.causes.com/causes/570191-cure-compact-crampomitosis/about
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Lisa Petrison, who has a PhD in marketing has managed to pique the interest of the leadership of Rotary International in ME. Apparently it is possible to interest 'disinterested' people who can make a difference!! Thank you so much Lisa!:

Slayadragon
Reply #43:

Simply from a PR point of view, here's an observation.

I recently talked at length (30-60 minutes each) with several top people from Rotary International. These included the head of the whole organization (who is in frequent contact with Hillary Clinton and Bill Gates), the head of the Rotary Foundation (which helps administer grants to charitable organizations), the editor of the Rotarian (1 million + circulation), the science writer for the Rotarian, and (via email) a regional Rotary manager for the SF Bay Area.

Rotary is the largest humanitarian organization in the world. It has 33,000+ clubs and 1.2 million members worldwide. They have raised $200 million for polio for the international effort, but by far most money and contributions go to local causes.

I put together an information packet for these folks. This included background on the disease, info that it had been linked to a retrovirus (with the Science and PNAS articles), five case studies of ME/CFS sufferers, and a few other items.

One of the case studies is here:

http://www.cfsuntied.com/casestudiestuan.html

The conversations covered a number of topics. What I found was that the case studies were absolutely shocking to these folks. (The head of Rotary had never heard of the disease before; the others had some knowledge, in one case because of a previous work experience with a sufferer.) The idea that folks could be wholly well, happy, productive, successful and then one day drop into illness and never recover again was, I believe, horrifying.

The head kept saying, "You mean these people never get better? I never heard of this disease. I know of all kind of diseases, but I never heard of this disease. How many people have this disease? And there's nothing that can be done about it?"

(No commitments to actually help out yet, but my husband and I are still plugging along talking to them. It may still happen.)

I proactively brought up the retrovirus. These folks expressed no interest at all. They kept coming back to the case studies and how horrible the disease was.

My takeaway from this was that while the retrovirus may be getting us some media coverage, it doesn't seem to be what resonates with ordinary well-meaning folks (or very high-placed well-meaning folks) who know nothing about the disease. It's the shocking nature of the disease, the fact that it hits people unexpectedly at a young age, and the permanency of it that's impressive and stimulates them to action, I think.

I fear as much as anyone (maybe more because I've focused on it) the idea that this disease will slip off the radar screen if XMRV "goes away." After Elaine de Freitas' work faded away in 1994, there were no articles focusing on CFS (or ME/CFS or whatever) in the NYT for 12 years. The exception was about an epidemic in Japan. Thank God for David Tuller putting it back in the spotlight in 2007. Other U.S. papers were just as bad.

But based on my interactions with the Rotary folks, I don't think that focusing solely on the retrovirus is what will give us traction in terms of getting public support -- and public (rather than government) support is the only thing that's going to drive this. I think it's the wasted lives and the horrific symptoms that are the key.

I certainly think the retrovirus is important and that we need to focus on it. Personally, my judgment (I don't like to say I "believe in" is because that's not science) is that the idea that there's a retrovirus causing this disease makes sense and thus far has the preponderance of the evidence behind it. My feeling is that toxic mold and cyanobacteria (both of which Gerwyn has written about as part of the phenomenon on this board) work in conjunction with the retrovirus and other pathogens, not on their own.

(Just so that I don't get dismissed as the "enemy" too.)

But I'm not convinced that this should be our only focus, or that scaring people with it and particular is the way to go.

Retrovirus or no retrovirus, these stories are scary to people. Because the retrovirus is not yet proven to exist or do anything, it can be dismissed. But the stories -- when presented in a group with photos -- are real regardless of what the cause is.

There is such a thing as empathy in the world. And I think it may be that people aren't empathetic to use (yet) merely because they don't know and don't understand.

Maybe we can change that. At least in the U.S., anyway.

Best, Lisa
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
a person to add to the list: a Filipino Senator, Miriam Defensor-Santiago, said to have CFS:

http://www.gmanetwork.com/news/stor...ittle-dizzy-miriam-leaves-impeach-trial-early

Saying her chronic fatigue syndrome seemed to have kicked in anew, Senator Miriam Defensor-Santiago on Wednesday afternoon left the impeachment proceedings ahead of her fellow-senator-judges.
...
Asked if she intended to come back after the break, the senator replied: 'No, I'm feeling dizzy.' She added that her 'chronic fatigue' seemed to be setting in once more.

The 66-year-old feisty lawmaker had earlier revealed that she was suffering from chronic fatigue syndrome, which she said could be attributed to a hereditary heart condition.

In the earlier stages of the impeachment trial, Santiago had to skip the trial due to hypertension.

the article continues, discussing the impeachment trial of the Philippine Supreme Court Chief Justice Renato Corona.
 

justinreilly

Senior Member
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Location
NYC (& RI)
Thanks Willow. last time i checked i could not now add to the list because of a lock-down on editing posts after a certain time period. i will add it to the list on the other forum.