Ailing biologist Dr. Alfred Kinsey pleaded to A & P supermarket heir George Huntington Hartford II in the 1950s for a research grant to cover his groundbreaking research into human sexuality. “We need money,” Kinsey told Hartford in the film Kinsey. “We need someone to give us money. You have no idea what I’ve had to endure just to obtain the same rights other scientists take for granted. My funding has been slashed, my name has been dragged through the mud in every newspaper and magazine across this country…. We’re broke. I’m not sure how much time I have left. Help me. I have to get it all on the record.”
Hartford refused to give Kinsey the grant: He found the subject matter too scandalous and controversial.
Sound familiar?
If enough ME/CFS patients vote in round two of the Chase Community Giving contest, they can help ensure that WPI gets the money it needs for ME/CFS research.
1. Go to facebook: http://www.facebook.com
2. Copy and paste this URL: http://www.facebook.com/ChaseCommunityGiving?ref=ts
3. Click the "like" button (to the right of "Chase Community Giving" at the top. If you’ve already "liked" Chase Community Giving, you won’t see the “like” button, and you can skip to the next step.
4. Copy and paste this URL: http://tinyurl.com/wpiround2 Click the big green "Vote & Share" button to cast your vote.
2. Copy and paste this URL: http://www.facebook.com/ChaseCommunityGiving?ref=ts
3. Click the "like" button (to the right of "Chase Community Giving" at the top. If you’ve already "liked" Chase Community Giving, you won’t see the “like” button, and you can skip to the next step.
4. Copy and paste this URL: http://tinyurl.com/wpiround2 Click the big green "Vote & Share" button to cast your vote.
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Thanks Mindy for reminding us all about this extremely valuable opportunity! If you do one thing to help pwME everywhere this year, I think it should be to vote for WPI and CAA and to ask all of your friends (facebook and otherwise) to vote.
ReplyDelete1st place: :$500K
2nd: $400K
3rd: $300K
4th: $200K
5th: $100K
6th - 10th (i think): $40K
11th - 20th (i think): $20K
I generally oppose CAA, but in this one instance I ask you to vote for CAA (in addition to WPI) because they will put all that money toward research.
join us and rally on PR: http://forums.phoenixrising.me/showthread.php?11418-Helping-to-win-900-000-for-ME-CFS-research-brainstorming-for-Round-2-Chase-comp
Why is the CFIDS of America trying to attach itself in the voting with WPI. Their reps are posting everywhere and trying to give the impression they are working with WPI. They weren't willing to give them research grants and their goal is to promote CBT and EBT. They want us to receieve the same treatment that UK patients are having to endure. McKleary herself said the US needs more EBT/CBT studies right after the pace info came out. And besides the CAA actually get government grants. If the CAA were to win the contest the money would go for more EBT/EBT research. I think we've had enough of that to last all our lifetimes. The money would also go for their newest pain in women propaganda they've been peddling lately. Vote WPI for biomedical research and treatment. The CAA had their chances. They failed.
ReplyDeleteJustin, this is nonsense. CAA is trying, once again, to obtain money by using WPI's reputation. I cannot believe that otherwise intelligent people such as you would fall for this. Even if CAA did give the particular funds they might receive from Chase Giving for research, they would take an equal amount of money which they would otherwise have spent on research and put it back into the fund to pay employee's fat salaries. Besides, there is no one to hold them to that statement that they would spent it for research anyway. And if they spend it for research such as their recently funded Shin et al study, that is something patients certainly do not need.
ReplyDeleteWPI won't get any more votes from joining this "vote for both" plan of CAA's (that is really their BIG IDEA--con WPI supporters into voting for CAA), but WPI certainly will not.
This is simply a way for the CAA to steal a few votes. DO NOT FALL FOR THIS! The CFIDS Assn of America is not a patient organization, remember, it is a "donor" organization; i.e., they only care about making their big donors happy and securing their large salaries. BEWARE OF THIS NONSENSE FROM THE CAA !!!
THIS IS JUST ANOTHER WAY TO CON WPI SUPPORTERS!
Patricia Carter
The CFIDS Association has funded high-quality biomedical research and has not funded any CBT/GET research. In fact several CAA-funded research projects have went on to obtain even larger NIH grants.
ReplyDeletehttp://www.cfids.org/about/acceleratecfsresearch.asp
Thanks for covering this, Mindy.
ReplyDeleteI believe we need every research dollar we can get. Voting for the CAA doesn't cost WPI votes: we can each vote for both and it's free money. Here's the link to vote for the CAA:
http://apps.facebook.com/chasecommunitygiving/charities/561683450-the-cfids-association-of-america
Many people object to the CAA's CEO's salary level and their unhelpful public pronouncements in the past (they have recently announced they've withdrawn from advocacy to concentrate on research, presumably in response to complaints). But not winning in Chase won't stop them paying salaries and their advocacy never cost them money - so there's no reason not to support them in getting research money.
We would be crazy to pass up hundreds of thousands of dollars of FREE RESEARCH MONEY! Do we want to stay sick for ever? Do we think the WPI (who I strongly support) can do everything?
There were many, many impressive CAA-funded projects at the recent NIH State of Knowledge conference and their insistence on data sharing and collaboration among their funded researchers to speed up advances in the field is extremely impressive. We need more of this.
We don't have to like everything about the CAA but let's not help to starve ourselves of desperately needed research funds. Support research by both the WPI and the CAA, please.
For the CAA to give this false impression they are working with WPI is just another of their con jobs. They are just trying to make money for themselves and trying to use WPI's discovery to do it. The CAA did not help WPI when they could have and they continue not to help or work with them. They have had 25 years to advocate for us and they have failed. They do not listen to patient requests for the research of biomedical causes of our illness. What makes people think they are going to do it now? They need to find another business venture. The money would be better served to go to another organization. Maybe one for autism. Let's help the kids
ReplyDeleteI hate these popularity contests with a passion. They are a stupid way to direct important funds but in the end it's still much needed money and so we're selling our "pairs of eyes" for advertising dollars and all the data mining that can be done from a Facebook account(which is a lot)!
ReplyDeleteHowever, in this instance I do see an important message. The failure of the CAA to earn the trust and gain even the smallest degree of the support form the patient community is a direct reflection on Kim McCleary's failure to lead and it is nothing less.
There are plenty of "CFS votes" out there and no real barriers or costs for supporting both the WPI and the CAA. Yet quite a large percentage (60-70%) of those voting for the WPI won't vote for the CAA.
The CAA's board of directors must see this for what it is and start to serve the patients instead of serving Kim (they do this by replacing Kim and asking how the CAA managed to alienate so much support). Until the Board wakes up and sees the damage done by KM, the CAA will always be marginalized (but Kim will still be taking home $175K - and for what?)
It's not true that the CAA aren't funding research into the biomedical nature of our disease. That's all that they are funding. Here's a link to their page summarising what they're doing including the crucially important study by the Lights, demonstrating the changes in ME patients' blood chemistry up to 48 hours after exercise - really stunning stuff.
ReplyDeletehttp://www.cfids.org/about/acceleratecfsresearch.asp
Whatever we think of the CEO's salary and their past failures in advocacy, is that any reason to pass up on hundreds of thousands of dollars of research money? Money that's being given out for free and that is not at the expense of any other ME/CFS research charity?
It's researchers who will get this money! Please, please let's not starve them of it. We'd only hurt ourselves.
Just echoing what some have said above that the CAA have a very good research program especially if one has doubts about XMRV and MLVs having a central role in ME/CFS. I think we need lots of angles being followed up to see which ones work out as we only have one life.
ReplyDeleteAnd it's the researchers (and in the end us) who are going to lose out if the CAA research program doesn't get money as was pointed out above.
Well read this. It has very good reasons for not voting for the CAA. http://www.oslersweb.com/blog.htm?post=648635
ReplyDeleteFrom the Whittemore Peterson Institute Facebook page:
ReplyDeleteA message from Annette Whittemore .
"As the competition moves along more charities are combining efforts. In the spirit of working together for patients, we're asking for people to use any unused votes to help support the CAA. Many have already voted for both and we thank you. Let's make medical research and patients a priority on this top 10 list for Chase."
---
Links for the two organisations are:
(i) the CFIDS Association of America: http://t.co/VZEd5Pk
(ii) the Whittemore Peterson Institute http://t.co/Ev8j2dP
The patient community knows where its money is better spent and that is why WPI is currently in 7th place while CAA is 29th. WPI should do much better now that it also has the support of the Autism community. Generation Rescue, Talk About Curing Autism, and the National Autism Association are teaming up to vote for WPI thanks to Kent Heckenlively from the Age of Autism because they know its their best hope of getting answers too.
ReplyDelete90% of patients surveyed want the CAA to change direction and leadership. McCleary and Vernon have been antagonistic to WPI and generally incompetent in advocating for our needs, mismanaging the SoK meeting and making nice with the government. That's how they can fund more research on symptoms but its all been done before and what we really need now is clinical trials of immunomodulators, antivirals and ARVs.
CAA should be helping WPI during this difficult time of government attempts to cover up retroviral findings again, they should have learned from their failure to continue support for Elaine de Freitas. Pandora has been no better, wasting efforts on hoping to build their own NEI centre while failing to do everything they can to first support the WPI which is under attack from the government. Some charities exist purely for their own personal gain.
Patients will have no need for duplicate “centres of excellence” if WPI is vindicated and our own doctors and specialists can diagnose and treat us. That’s why WPI is such a threat to CAA and Pandora, and that’s why we don’t need CAA and Pandora. Vote for WPI!
Yes do vote for WPI but WPI want us to vote for CAA as well! See Annette Whittemore's message on Facebook:
ReplyDeletehttp://www.facebook.com/pages/Whittemore-Peterson-Institute/154801179671#!/permalink.php?story_fbid=132576046817317&id=100002447915966
Everyone has five votes in the contest but can't vote for any charity more than once. It's not WPI vs CAA: we can vote for both.
What's past is past. Giving the CAA a kicking to "punish" them for past failures only hurts patients by depriving us of research funds.
The WPI clearly recognises this: otherwise it wouldn't be asking us to support the CAA.
ME/CFS is ranked 206th out of 215 diseases in terms of the funding it gets from the NIH. We don't have the luxury of passing up research money. If we do, we're going to stay sick for longer.
"Anonymous" said:
ReplyDelete"The patient community knows where its money is better spent and that is why WPI is currently in 7th place while CAA is 29th."
I think a lot of people agree that money is better spent on the WPI. When I donate my own money I donate to the WPI, not the CAA. Now that it's Chase's free money, I vote for both. We could double our money for biomedical research.
If the CAA doesn't get it it's going to be some charity to save the wolves or have kids in a drum corps. Is that kind of stuff really more important than the lives of millions of people?
I usually remain neutral when it comes to debates on CFS Central, but here I have to step in: In my view, the CAA not only abandoned patients decades ago, it has repeatedly worked against patients and damaged them irreparably.
ReplyDeleteReason consists of always seeing things as they are, not how we’d like things to be. I’d carefully consider the ramifications before rewarding the CAA’s bad behavior with voting for more of it.
Hi Mindy - I agree that we need to see things as they are - not just not how we would wish them to be, but not how they have been in the past. It's now that counts.
ReplyDeleteThe CAA have taken a real hammering from patients over their poor advocacy record and in the "now", the CAA have announced that they are withdrawing from advocacy to focus on research.
The research that they have funded lately has been hugely valuable and their insistence on collaboration and data-sharing between researchers is at the leading edge of what other medical research charities are doing.
If we could punish them for the past without punishing patients, that would make sense to me. But in the "now" they've withdrawn from advocacy and are focusing on valuable research. We should reward them for changing - especially as in doing so, we get more biomedical research done for our illness.
The arrival of the WPI on the scene has put enormous pressure, via patients, on the CAA to change what it does. Without the WPI, I don't know if we would have seen this good stuff coming out of the CAA. But the CAA's most recent behaviour over the last couple of years or so has been funding top-quality research: let's reward that behaviour and get more of it.
Thank you Mindy for speaking up so strongly, too many people have been brainwashed by CAA's dominance and lies to even begin to understand how much damage they have done.CDC covered up the global epidemics of M.E. by calling it CFS in 1988 and creating a definition that did not describe the disease and allowed for psychiatric interpretation.
ReplyDeleteCAA did the rest, branding the humiliating name and getting paid well by CDC to do it. A testament to how effective marketing (propoganda, brainwashing) can be. That's why celebrities did not step up and speak for us as they did for AIDS, they risked being branded as crazy for having the "psychiatric" non-disease CFS.
Research papers on M.E. epidemics began in 1934, M.E. has had a WHO neurological classification since 1969, the Ramsay definition was published in 1981 and retroviral causation was suspected in 1985 due to AIDS-like brain scans and immune dysfunction! Watch this Primetime News Report on CFS and CDC's Failure to Respond: http://www.youtube.com/watch?v=AW0x9_Q8qbo
CAA has never told the truth, so CAA has taken patient's money under false pretences. CAA has repeatedly lied to US patients, they stopped funding Elaine de Freitas retroviral research in 1991, and stopped an important motion to have the name M.E. restored in 1999. They attacked the WPI and refused to help fund them, they are now moving in on NIH - read The Patient Advocate's blog on the SoK meeting.
The research CAA is doing is more of the same "symptom" based research, nothing new here. WPI has done in a few years what CAA refused to do for 25 years, find the cause and then treat it! Clinical trials for Ampligen, antivirals and ARVs are where the game is at now and WPI is where our money will give us the truth and the treatments denied to us for so long.
People have died because of the CDC/CAA lies - no tests, no treatments. And that's how they like it, the longer "CFS" stays "mysterious" the longer Kim gets to keep her $170,000 salary. Its all lies, there are biomarkers - the most reliable is low NK cell function, and there are treatments - Ampligen (20 years), Herpes Antivirals and ARVs. CAA won't tell you about that, its still "mysterious" you know!
Research the info CAA failed to tell you about, the history of M.E. epidemics at NAME-US and ME Research UK, the WHO classification of M.E., conference videos and articles at Invest in M.E., articles by Prof Malcolm Hooper and Margaret Williams at MEActionUK. The truth about M.E. that everyone should know!
I am sick of CAA-brainwashed patients defending the despicable CAA organization and its lies. Get with the program.
From Chase Giving official rules:
ReplyDelete(WPI currently in 7th with 3 days to go)
◦$500,000 to the Charity receiving the most votes (rank 1);
◦$400,000 to the runner-up Charity (rank 2);
◦$300,000 rank 3;
◦$200,000 ranks 4-5;
** ◦$100,000 RANKS 6-10; **
◦$40,000 ranks 11-15;
◦$20,000 ranks 16-25.
•Advisory Board Selection: Once Round 2 is over, the Advisory Board will select five charities from the Round 2 Charities to present their Big Ideas to the Board. The Advisory Board will decide which Big Idea is their favorite and Chase will donate $200,000 to that Charity. Chase will also donate an additional $300,000 in grants to be allocated in varying amounts to the Round 2 Charities selected by the Advisory Board.
Please, let's re-direct ALL our energy into getting $100,000 extra dollars for WPI (currently 7th and 1,500 votes behind the 5th spot which is worth $100k extra) instead of debating whether we should try to get $20,000 more for CAA. CAA is currently 29th and needs to be in 25th spot for $20k, but is irrelevant to my point about DROPPING THE DEBATE and WORKING LIKE MAD to bring home this extra $100k for WPI. Are you kidding? $200k just by clicking a couple buttons and asking others to do the same? If we can't do this, ME/CFS self-advocacy is doomed.
ReplyDelete3 days to go. Please bother everyone you know with a Facebook account and ask them to:
1) Vote for WPI
2) Re-post for their FB friends to do the same
Once we lock in this extra $100k for ME/CFS, I promise we can get back to grumbling, infighting, and wondering what Chase will do with our personal info on Facebook.
There is no excuse for us not getting WPI into the 5th spot. I like flowers and drum music as much as the next guy, but seriously...these are human lives and suffering we're talking about here.
Love you all. I mean that.
Annette Whittemore has now added two additional charities to the WPI and the CAA that she is asking people to vote for (because they have agreed to support the WPI). The other two are the Epilepsy Foundation of Florida:
ReplyDeletehttp://apps.facebook.com/chasecommunitygiving/charities/592164525-epilepsy-foundation-of-florida-inc
and Jeppeson Vision Quest:
http://apps.facebook.com/chasecommunitygiving/charities/593269114-florida-s-vision-quest?src=twitter
If you vote for them, it would be a good idea to leave a supportive message asking them to vote in return for WPI and/or the CAA, whose pages links are:
WPI: http://bit.ly/lgSzGG
CAA: http://bit.ly/jmJJoB
fwiw, I oppose CAA. I have said recently and more than once that they are acting in such opposition to the interests of pwME that they are operating unlawfully and should wind-down their org and donate the assets to WPI (I am a disabled, non-practicing lawyer). I have asked that people vote for CAA because the money is free to us.
ReplyDeleteThere are negatives, but imo they are outweighed by the 'free money' aspect. One of those negatives is that any money they get will allow them to be solvent as an org longer. Their 'advocacy' problems aren't just 'past' they are present, and almost certainly, future. They resolved to focus on science quite a while ago, nothing much has recently changed about them. Have stopped asking for votes for CAA on patient fora and blogs out of respect for the opinions of those i respect.
Mindy, thanks so much for posting such detailed instructions. Even I could follow your steps, cut and paste urls, and made it through all the steps and successfully voted for WPI!
ReplyDeleteAll of you who are so active online daily forget that for many of us this disease robs so much of our former intellectual capacity that figuring out and executing complicated, multi-step actions (like complicated Facebook maneuvering of many kinds) is beyond our capacity. I thought I wouldn't be able to figure out how to vote and had given up. But God bless Mindy for coming to the rescue with these foolproof instructions. Thank you.
Hi Mindy and everyone,
ReplyDeleteI'm posting this on every CFS blog I read. It is a declaration and a call for action!
Most of us probably know that both the WPI Institute and the CFIDS association are in the running to win hundreds of thousands of dollars in grant money from Chase Community Giving. We know this, and we're voting, right, because we're an incredibly strong, vital internet community. But...only about 5,000 people have voted. We are getting beaten by a drum corps! Am I really supposed to believe that more people out there care about a drum corps than about doing research that could potentially save our lives? I can't believe it! We have to do something.
Because this issue is so important, I swallowed my pride (I usually think mass Cause Emails are annoying) and emailed all my friends asking them to vote for WPI, and although they love me, only like 3 voted. So here's my idea and suggestion: I'm going to email or facebook message each of my friends individually, and not care how annoying I am, and ask them again to vote. I could probably get over 100 votes that way, depending on how many of my friends are flakes. I'm not talking about just my good friends, I mean even just random Facebook acquaintances, too. It's annoying, but my friends will forgive me, and who cares what my acquaintances think?
Anyway, like the nature of voting itself, one person doing it alone doesn't make much of a dent, but if a lot of us do it, even if just a few of us harass everyone we electronically know, we could get hundreds, maybe thousands of votes. Let's do it, and encourage all our sick Internet-addicted friends to do it, and even our healthy friends. Lets get organized, people! I'm going to post this on my blog and every blog I read, and them I'm going to spend the rest of the day harassing people, and its going to be awesome. Please join me!
STEP-BY-STEP Instructions:
1. From your Facebook page, go to Chase Community Giving:
http://www.facebook.com/ChaseCommunityGiving.
2. "Like" Chase Community Giving by clicking on the "Like" button.
3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.
4. Cast your vote for WPI by clicking the "Vote Now!" button.
Love,
Lee
www.wecanstillblog.blogger.com
Lee, great idea - I saw someone on a forum say that they went on Facebook and whenever they saw that one of their friends was online, contacted them and asked them on the spot to vote then and there. People did it straight away (I think she got 30 votes for WPI) and if they had problems with the procedure she was able to talk them through it. I think that's a good strategy.
ReplyDeleteSomebody on the Phoenix Rising forum contacted the director of the Marfan charity to suggest an alliance of health charities and it's working - you can see from WPI's Chase page that Marfan people are voting for WPI and you can see on the Marfan page that they're getting support from WPI supporters.
ReplyDeleteThe charities in the alliance are:
Marfan http://bit.ly/jFw0Q4
Rett Syndrome http://bit.ly/fcnRBp...
CFIDS http://t.co/VZEd5Pk
WPI http://t.co/Ev8j2dP
If you have some votes to spare (we each started with five votes), please vote for another charity in the alliance and leave a comment on their Chase page to say that you're voting as part of the alliance and hope that they'll support the WPI & CAA (remember to provide them with the links so it's easy).
It's already working - let's get on the bandwagon!
It's not working. The ramifications of voting for the CAA are incalculable. This was a terrible move by the WPI and I hope they see sense.
ReplyDeleteI'm hoping that the fact they didn't get any money in the second round, despite WPI endorsing them, sends a strong message to CAA that the current management must go! But I'm not counting on it.
ReplyDeleteMy new blogpost:
ReplyDeleteLet's Tell Chase how Great WPI is! 500K More to Win!!
http://forums.phoenixrising.me/entry.php?928-Let-s-Tell-Chase-how-Great-WPI-is!-500K-More-to-Win!!-chasecommunitygiving-chase.com
There is now a new contest for up to $250,000 by Vivint. WPI is in the contest. It involves voting daily via Facebook. WPI's page is at:
ReplyDeletehttp://www.vivint.com/givesbackproject/charity/769
It's currently first place in its region in Phase 1, where charities get endorsed to go into Phase 2. It's in Phase 2 that the cash comes in.
There's now quite a long thread on Phoenix Rising about it. This post on the forums explains the rules:
http://forums.phoenixrising.me/showthread.php?11746-Another-Contest-Vivant-to-WIN-Reseach-Money!!&p=182572&viewfull=1#post182572
There's a Facebookk thing here where you can sign up for a daily reminder to your email:
http://www.facebook.com/event.php?eid=121179681298558