Does it make ANY SENSE not to vote for CAA to get big research $$$ in the Chase Conte

[Sasha]

Do we really want the CAA to only get $20,000 when it could easily get over $100,000 for research into our disease at no cost to us and not at the expense of other ME/CFS organisations? Were fighting to get our lives back can we really afford to throw hundreds of thousands of research dollars away?

The second and final round of the Chase Community Giving contest begins on May 19th. Both the WPI and the CAA are through to that round and are the only CFS organisations in it. In the first round, WPI was 5th with 2,978 votes; the CAA was 23rd with 1,078 votes. Both won $25,000.

In this final round, the charities ranked 1-25 by voting will get the following cash prizes:

1st. $500,000
2nd. $400,000
3rd. $300,000
4th to 5th. $200,000
6th to 10th. $100,000
11th to 15th. $40,000
16th to 25th. $20,000

So if the votes play out in the next round as they did in the last, WPI might get $200,000 and the CAA a measly $20,000.

Being from the UK, I didnt have much awareness of the CAA until I joined these forums but I have seen a lot of people criticising the CAA for making clumsy and potentially harmful public pronouncements, failing to update its website quickly to remove misleading and unhelpful information about our illness, and for paying a high salary to the CEO.

However, the CAA has, I believe, an impressive approach to research funding - a lot of the good stuff at the recent NIH State of Knowledge conference was CAA funded. On their website (here), their CEO says: We are transforming from a patient support and advocacy organization to one laser-focused on stimulating and supporting research. Im especially impressed by their insistence on data-sharing among researchers whom they fund in order to accelerate research (details about their research programme and approach here).

To me, it makes no sense to withhold votes from the CAA because of unhappiness about their public pronouncements, slow website updating, high salaries or similar issues. Not getting a big prize from Chase wont affect those things but getting big $$$ would mean that they have much more money for research.

Please, if you were among the nearly 2,000 people who voted for WPI but not the CAA in the first round, consider whether it is better for all our health for the CAA not to have much more money to spend on research.

Its one thing to avoid donating money to the CAA when youd prefer another ME/CFS research organisation to get it, but thats not the situation were in here. This is free money and if the CAA dont get it, it will go to charities who are not in the same desperate need as we are.

I hope this starts a productive and civil discussion on this specific issue: does it make any sense not to vote for the CAA in the Chase Contest? If you want to make general comments about whether the CAA is good or bad, that would be off-topic here and not helpful so please make those comments on the existing thread for that purpose (here).

 

[SpecialK82]

Thanks Sasha for starting this thread, it would be great to get this all hashed out before the next round of voting.

The CAA has promised that every single dollar of this money will go towards research for diagnostics and treatment. Many who watched the SoK workshop last month saw several of the presenters thank CAA for helping to support their research. The CAA's strategy is to provide seed money to promising researchers who will then use their results to apply for much larger grants from the government. The NIH has stated before that they don't have enough researchers applying for CFS grants and so that money goes elsewhere.

We are on a huge push (thanks to successful SoK workshop and Obama awareness) for increased government funding - we are making headway. But we also have to make sure the we get research projects in front of the NIH. We have to fund the preliminary research so that it will entice the government to do much more. Just think - if CAA wins $400,000 for example, the research results could lead to an easy $3,000,000 + more from goverment pockets!

I think we all need a big breakthrough - please vote for CAA and WPI as our very health and lives depend on it.

 

[Dolphin]

Thanks for starting the thread, Sasha.
I would find it very frustrating if a huge gap in votes was repeated in round 2 leading to the CAA getting little or nothing.

The threshold of "any sense" is pretty low - I imagine some people can come up with some sort of reasons. But any reasons need to be weighed up against the money not being available for ME/CFS research.

Strictly speaking, I think we're not talking about 2000 WPI "supporters" not voting for the CAA: quite a lot of the difference may be to do with appeals that simply mentioned the WPI and not the CAA, either posted on ME/CFS forums or to others e.g. family, friends, etc. There will probably remain some difference in votes in round 2 but the difference seems very large.

 

[Sasha]

The threshold of "any sense" is pretty low - I imagine some people can come up with some sort of reasons. But any reasons need to be weighed up against the money not being available for ME/CFS research.

Thanks, Dolphin - my hope is that people who disapprove strongly of certain aspects of the CAA withheld their vote from them in the way that they'd have withheld cash, because they would prefer their cash to go elsewhere. However, with the Chase Contest, it's free money and not at the expense of any other ME/CFS charity. I hope it was just that habit of mind and that if people think about it they'll realise it's a different model here.

Strictly speaking, I think we're not talking about 2000 WPI "supporters" not voting for the CAA: quite a lot of the difference may be to do with appeals that simply mentioned the WPI and not the CAA, either posted on ME/CFS forums or to others e.g. family, friends, etc. There will probably remain some difference in votes in round 2 but the difference seems very large.

Yes, I think that's very likely true! But I really hope that in this next round people will mention both WPI and the CAA to their friends.

Such a lot of research money at stake!

 

[justinreilly]

I oppose CAA generally, but I support voting for them in the Chase contest for the reasons stated above.

 

[WillowJ]

I also support voting for CAA in the Chase contest as explained so well already.

 

[frenchtulip]

I see value in the research of both organizations, but even if I didn't like one or the other, I would still vote for both. I would like to see as much money as possible for research, especially when research for our illness is grossly underfunded by the government.

 

[CBS]

I'd vote for the CAA if they would publicly commit to passing ALL the money along to the researchers in the form of grants.

 

[WillowJ]

I'd vote for the CAA if they would publicly commit to passing ALL the money along to the researchers in the form of grants.

It appears that this is so:

The CAA has promised that every single dollar of this money will go towards research for diagnostics and treatment. ...

they have to have a "big idea" to be in this level, which will explain how the money will be spent if they win at the next level. I don't find it at the Chase page or the CFIDS Association's site, but it will need to come.

 

[illsince1977]

Wasn't even aware could vote for multiple orgs. Thanks for the heads up.

 

[WestOzGirl]

Makes More Sense To Vote For The WPI

To be frank, from what I've observed, the WPI has done more for this disease than anybody else in the short amount of time they have been around.

 

[Sasha]

To be frank, from what I've observed, the WPI has done more for this disease than anybody else in the short amount of time they have been around.

Hi WestOzGirl - but the question on this thread is, does it make any sense not to also vote for the CAA? In the Chase Contest, both organisations get free money if we vote for them, and not at any one else's expense. The CAA funds a great deal of high quality research and if they get more money, they can do more. Is there any reason not to vote for them as well as for the WPI?

 

[markmc20001]

Please don't forget the polll that shows over 90% of patients don't support the CAA.

http://forums.phoenixrising.me/showthread.php?10169-Caa-poll

I wouldn't be surprised if the CAA works for Big Pharma like every other agency around the world involved in health, especially the CDC and the UK's MRC.

Big Pharma wants to keep us sick because they profit immensely from selling anti-depressants to all the people with Reeves disease they help define over at the CDC. Biggest scam in history.

So if the CAA are cooperating with BIG pharma, then money to the CAA actually works against us.

 

[Sasha]

Hi mark - specifically, the poll shows that 90% of patients believe that the CAA should "change direction and leadership". But what we're talking about here is whether the CAA should get a big, free injection of cash that will go to research into our disease.

I don't understand why you think that the CAA works for big pharma. Their research grants have gone to people like the Lights who are looking at mechanisms of our disease. Unless someone spends money on research like this, we're going to stay sick. And at some point, we're going to need pharmaceuticals. How else are we going to get better?

Big pharma does profit from people being sick but does that mean that people who are sick shouldn't get medicine? Or research into their disease?

 

[Dolphin]

Hi mark - specifically, the poll shows that 90% of patients believe that the CAA should "change direction and leadership". But what we're talking about here is whether the CAA should get a big, free injection of cash that will go to research into our disease.

I don't understand why you think that the CAA works for big pharma. Their research grants have gone to people like the Lights who are looking at mechanisms of our disease. Unless someone spends money on research like this, we're going to stay sick. And at some point, we're going to need pharmaceuticals. How else are we going to get better?

Big pharma does profit from people being sick but does that mean that people who are sick shouldn't get medicine? Or research into their disease?

I'm not sure if the CAA have much of a connection with big pharma either.

However, I think the problem with ME/CFS has been hyping of non-pharmacological treatments particularly graded exercise therapy and CBT based on graded exercise therapy - that the illness can be conquered with the right lifestyle and attitude changes. The ME/CFS literature doesn't talk about antidepressants as being a cure or even doesn't talk about them much at all.

So if one divides psychiatry into those who are into drug treatments (chemical imbalances) and those who are into non-drug treatments, our problem has been more the hyping of non-drug treamtments.

Also, I think I personally am going to need pharmaceuticals to get better. And it isn't really governments who develop pharmaceuticals or generally spend the big money on trials. So we do need pharmaceutical companies to be interested. But we also need to know what is involved in the illness - the cause and pathophysiology.

 

[Dolphin]

Hi WestOzGirl - but the question on this thread is, does it make any sense not to also vote for the CAA? In the Chase Contest, both organisations get free money if we vote for them, and not at any one else's expense. The CAA funds a great deal of high quality research and if they get more money, they can do more. Is there any reason not to vote for them as well as for the WPI?

Yes, I think it's pretty clear that the WPI are going to be ahead of the CAA (but if anybody is worried, they could always wait till towards the end of the contest to be sure). The issue with regard to voting for the CAA is whether people would prefer the money would go to the CAA's research program or a random charity like a drum corps.

 

[Hope123]

Sasha makes some very good points.

Especially the one about how this is NOT about getting one vote and having to decide about CAA vs. WPI vs. another ME/CFS group but getting FIVE votes in Round 2 and casting your vote for the only TWO charities on the list directed at ME/CFS, the CAA and WPI. [Remember you can only use one vote for each charity.]

I'm one of those folks who doesn't agree with the CAA's advocacy stance (i.e. they've decided to pull out of patient advocacy) but I do support their RESEARCH efforts so I voted for both WPI and the CAA.

I'm going to be obnoxious here and ask how many more days/ weeks/ months/ years/ decades do you want to be sick? Well, not supporting ME/CFS research efforts as much as possible only lengthens that time. While CAA or WPI winning a lot of money doesn't guarantee a treatment or cure in the near future, it does increase the chances of finding one.

Let's not leave any free money on the table. Not voting for CAA is like cutting off your nose to spite your face.

 

[Desdinova]

Will the CAA even matter in one or two years from now. The way things are going with the XMRV studies and if the DSM-5 gets pushed through well, we'll all be in the bug house then. Some how I just don't see that letting Science sort Science out, is working out for us. I do believe that we've been hoodwinked with a top level song and dance routine while they finished nailing the lid down on our coffin. And when Ian's report comes back negative, inconclusive or says contamination we might just be able to faintly hear the fat lady singing as they're shoveling dirt on our graves. :Retro mad:

 

[Hope123]

Will the CAA even matter in one or two years from now. The way things are going with the XMRV studies and if the DSM-5 gets pushed through well, we'll all be in the bug house then. Some how I just don't see that letting Science sort Science out, is working out for us. I do believe that we've been hoodwinked with a top level song and dance routine while they finished nailing the lid down on our coffin. And when Ian's report comes back negative, inconclusive or says contamination we might just be able to faintly hear the fat lady singing as they're shoveling dirt on our graves. :Retro mad:

It's fine to vent but what are you and others going to do about it? If not voting in Chase Community Giving, I hope you and others write to government officials, hold rallies/ protests, fundraise for ME/CFS charities -- whatever floats your boat and whatever you are able to do -- but ONLY venting will not push things forward.

Not a religious person here but I do believe the underlying thought behind the phrase 'God helps those that help themselves.'

 

[WillowJ]

CAA certainly has its problems, but my understanding is the money they get will go to research, so primarily to places like Pacific Fatigue Lab, the Lights, etc. This is money that isn't costing us anything except some time (and to set aside our grudges, however well-earned, for a moment and look at the big picture).

Like Dolphin said, we have a choice whether the Chase money goes to a random charity that is not saving human lives, or whether it helps research a way to help some of the most neglected people on the face of the earth (us). We also have 3 other votes (after voting for WPI and CAA), so maybe we can find some charities that help other neglected people who need maybe clean water, basic medical care, and cookstoves that don't give them lung cancer. Or other people desperately in need of medical research.