Article: Dollars For Research: the BIG Chase Contest Begins

Article: A Chase Life-line for ME/CFS Research: the BIG Contest Begins

You can view the page at http://forums.phoenixrising.me/content.php?424-The-Chase-Community-Contest-ME-CFS-Research-Lifeline-WPI-CAA

 

in case anybody forgot

In case anybody forgot. Here is a link to the poll about what patients think of the CAA.

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

9 out of 10 patients think they need new leadership and are heading in the wrong direction.

I can't imagine giving more money to an organization that has screwed us like that.

All research is not good research as we have so painfully learned by how Coffin, Stoye, the CDC, and all the bozos in the UK have acted. All the spin and crap that comes out in days after rsearch that has taken years to complete by the WPI.

 

mark - I'm kind of confused, I don't know of any research that CAA has done that has hurt us. The CAA has publicallly denounced the work in the UK, etc.

The CAA has funded the Light research and Broderick and Baraniuk. We need these good studies, and many more in order to maximize our chances of getting well. None of these studies are psychobabble BS.

 

mark - I'm kind of confused, I don't know of any research that CAA has done that has hurt us. The CAA has publicallly denounced the work in the UK, etc.

The CAA has funded the Light research and Broderick and Baraniuk. We need these good studies, and many more in order to maximize our chances of getting well. None of these studies are psychobabble BS.

I agree. I started a thread a while back in prep for Round 2 asking whether it made any sense at all not to vote for the CAA to get free research money. Here's the thread. Even people who disagree with many things that the CAA do were posting on that thread to support voting for the CAA in the Chase Contest.

I believe that we are in desperate need of money for biomedical research and that we'd be cutting our own throats not to do everything in our power to get every research dollar that we can for both the CAA and the WPI. If you aren't yet convinced, please read the comments on that thread and reconsider your position.

 

I posted this elsewhree but think it's worth posting her:

Everyone- please flood the WPI and CAA pages with comments about the desperate and URGENT need for this money!!! Remember- even if we don't make the top 5, Chase still picks one extra charity it deems worthy for a 200,000 dollar prize!! We need to make our organizations STAND OUT and tug at the heart strings so that the Chase advisory board sees how critical and worthy this is. They won't award that money to a group whose members' comments don't appear enthusiastic on their own voting pages. By doing this, we at least have a shot at that extra money!!!

That's a really good idea!

ETA: Done, for both! Good thinking, monobear.

 

I posted this elsewhree but think it's worth posting her:

Everyone- please flood the WPI and CAA pages with comments about the desperate and URGENT need for this money!!! Remember- even if we don't make the top 5, Chase still picks one extra charity it deems worthy for a 200,000 dollar prize!! We need to make our organizations STAND OUT and tug at the heart strings so that the Chase advisory board sees how critical and worthy this is. They won't award that money to a group whose members' comments don't appear enthusiastic on their own voting pages. By doing this, we at least have a shot at that extra money!!!

Actually I like this idea so much I have started a new thread quoting it because it is such an important and potentially successful strategy. Thanks again for suggesting it, monobear! Here's the new thread.

 

Thanks Dolphin - I know there's alot of frustration towards the advocacy arm of the CAA but I think this shows that your votes will go to aid research and they are quite good at funding good research that gets major funding from the NIH (which is the name of the game)

So if you're unhappy with the CAA if you can just grit your teeth and vote your vote will go to providing more research for ME/CFS - which is, of course, our key goal. Even if you gave the CAA a 'C' grade for research it would still be worth voting for them because it is Chase, after all, that is putting the money - and we need more research - even if its not of the ground-breaking quality of XMRV...

We win by supporting both organizations

I agree. I generally oppose CAA, but support them in the Chase Contest. Their research is good, imo (with the exception of the high executive salary overhead and failure to use CCC). This is 'free money' toward good research so we win by voting for CAA.

 

I agree. I generally oppose CAA, but support them in the Chase Contest. Their research is good, imo (with the exception of the high executive salary overhead and failure to use CCC). This is 'free money' toward good research so we win by voting for CAA.

Hey, if Justin can vote for the CAA then anybody can

I was struck during the State of Knowledge Workshop how many people thanked the CAA for supporting them.....the Lights, Broderick, Dr. Snell, Dr. Glazer, Dr. Freeman.....Dr. Jason worked with them on the Biobank...they are right in the thick of it in their research efforts. I think they've found their niche ....

 

The WPI is hanging tough at #6! with 2800 votes (well done indeed!)

The CAA is number 28 at 1069 votes (lets move them up!)

 

Thought I'd share my voting tactics. I've had quite a lot of success with friends voting by sending them personal messages via FB. I wrote an update and why WPI is important to me with the voting details. I opened FB in 2 screens on my comp...uter side by side. One screen showing my list of friends so I could seen their names alphabetically to type them into the messages (I think you're allowed 25 ppl per message), the other screen was the messages page where I'd copy and paste the same update. I cranked out over 600 personal messages in about 30 minutes and I've had at least 60 votes that I've seen. Not to mention countless personal notes from friends cheering me on. I wasn't sure if it would work or they'd just consider it spam. Well, it's worked!

And here's my letter if you need a template:

Hi!!

Im writing because I need your help. Im not asking for money, just two simple clicks of your mouse on Facebook. (If you don't want an updated of how I'm doing, just skip below to the links, I won't be offended! Just please vote!)

As you know, I have been sick now for 3.5 years. Unable to work, and depending on the day able to be out of bed from just 15 minutes to 4 hours a day. I have Myalgic Encephalomyelitis (ME) - a chronic, inflammatory, neurological disease that is multisystemic, affecting the central nervous, immune, cardiovascular, endocrinological and musculoskeletal systems. My body is unable to fight off viruses and infections like mono, roseola, lyme and pneumonia. For quite some time I have had all four of these infections, setting up shop in all of my internal organs.

17 million people worldwide suffer, with virtually no viable treatment options and no serious research institutions are doing anything about it.

Until the Whittemore Peterson Institute recently came along. One family, fighting for their daughter's life, footed the bill and opened a state of the art institute for the sole purpose of researching Neuroimmune disease. But, this single family can no longer cover all of these costs alone. WPI needs help raising money to perform the necessary research for a cure.

Thats where you come in. Just a simple "Facebook vote" by you could put the WPI in a position to receive $500,000 in the Chase Giving Campaign. Last I heard were in 5th place. It's easy. All you do is:

Go to: http://apps.facebook.com/chasecommunitygiving and click like

Once you "like" Chase Community Giving, you can vote for WPI by voting at: http://bit.ly/mrWckA

Voting ends May 25th.

As for me, I'm getting by. I miss working, running, travelling and general galavanting. But I'm one of the lucky ones who have ridiculously supportive family and friends.

Thanks for all of your continued support!!! This probably isn't the last time you'll hear from me asking for advocacy help. And please feel free to share my story and ask your friends to vote!!!

Ann

 

ME/CFS needs a really good advocacy organization.

Unfortunately, as long as the CAA keeps sputtering along, we're not going to get one.

Conceivably, with a major management change, the CAA could become a good advocacy organization for us. But as long as Kim McCleary and Suzanne Vernon remain in power over there, that's not going to happen.

And even though CAA now says, when cornered, that they're not an advocacy organization, they still are considered to be one by people who count -- including press, donors, and the government.

We need someone to advocate for us.

Giving money -- even Chase money -- to the CAA makes it less likely that this will happen.

http://cfsuntied.com/blog2/2011/03/08/the-caa-and-advocacy-a-guest-commentary/

BTW, what's the deal with that graphic? Does it look really phallic to anyone else, or is it just me?

Best, Lisa

 

ME/CFS needs a really good advocacy organization.

Unfortunately, as long as the CAA keeps sputtering along, we're not going to get one.

Conceivably, with a major management change, the CAA could become a good advocacy organization for us. But as long as Kim McCleary and Suzanne Vernon remain in power over there, that's not going to happen.

And even though CAA now says, when cornered, that they're not an advocacy organization, they still are considered to be one by people who count -- including press, donors, and the government.

We need someone to advocate for us.

Giving money -- even Chase money -- to the CAA makes it less likely that this will happen.

http://cfsuntied.com/blog2/2011/03/08/the-caa-and-advocacy-a-guest-commentary/

BTW, what's the deal with that graphic? Does it look really phallic to anyone else, or is it just me?

Best, Lisa

I agree that we need a really dynamic advocacy program and the CAA is not it - that's for sure but think about this...

The CAA was the only organization to fund the repeat exercise studies by the Pacific Fatigue Lab...The study they put out using that funding has changed the way researchers do research; exercise studies are the norm now and because of that results are now really showing in research. Look at the Light study; zero difference before exercise - huge differences afterwards. The same with Broderick - few differences before - big differences afterwards....That one funding project alone has made a huge difference.

I don't want to even have the chance of losing or missing something like that. I want every dollar we can muster going to research like that.....

The CAA's $100,000 grant to Gordon Broderick has turned into a 4 1/2 million project - the biggest ever in CFS (I believe). It will examine neurological, endocrine and immune factors after exercise. Broderick was able recently to use 5 biomarkers (cytokines) to differentiate three different courses of CFS.
That doesn't happen without CAA funding. With just these two impacts the CAA has more than made back the money invested in their research program.

The fascinating Light studies, Dr. Shungu's mitochondrial abnormalities in the brain and the HERV-K18 endogenous NIH grants - you can scratch those off the slate as well - if the CAA doesn't fund them - they don't happen...You're cutting a huge slate of exciting research out of existence here.

There's the gut flora work (using exercise studies again), the blood vessell/nitric oxide work......Are you really willing to give those up?

The CAA may be sputtering in advocacy but it is not 'sputtering' in the research field. It's doing VERY well. (And Suzanne Vernon is in charge of research not advocacy...if you have a problem with Suzanne Vernon's research focus...I don't what to say - I actually don't know how you could have a problem with her research focus).

I think we can have it all; the CAA can do their research and their part-time advocacy and a dynamic new group/groups can do their advocacy. We have been complaining about advocacy for years! "All' that is needed is a new advocacy group to form or to empower an existing one. I would argue that the MCWPA could easily fill those advocacy shoes if it was better supported. By himself, Bob Miller has been able to talk to Pres. Obama, Vice Pres Biden, Dr. Collin and Dr Anderson - one on one. PANDORA recently put a down payment on a Center Of Excellence in Florida....

There's no reason to tear down an existing successful research organizations in order to build a new advocacy group. A - I think the logic is faulty; the CAA is not inhibiting groups from forming and there's no reason to believe that some dynamic advocacy group will form out of the ether or that the govt will suddenly start listening to them if they. (They haven't listened to the CAA have they? Obviously they haven't).

The CAA has always left a void in the 'in your face' type of advocacy. That has always been available and they would have been more effective had we filled it. Now, more than ever, with the CAA stepping back on advocacy is the time to fill it.

I really cannot see, with the extremely limited resources that we as a community have, tearing down anybody! I just can't....

 

I think we can have it all; the CAA can do their research and their part-time advocacy and a dynamic new group/groups can do their advocacy.

I agree with all that you say about the CAA's research, Cort - but it seems to me from Kim McCleary's statement on the CAA website that they have really got the message that patients aren't happy with the quality of their past advocacy and that they are essentially withdrawing from advocacy. She says:

We are transforming from a patient support and advocacy organization to one laser-focused on stimulating and supporting research.

She says this in the context of a long statement that emphasises their new focus on research.

I agree it would be nuts to let a group fail that is doing so well now in producing such good research. We desperately need this research not just to continue but to expand if we are going to get well. I for one don't want to wait another 25 years.

 

We are 206th out of 215th in funding at the NIH.....need anything more be said?

Wanting to penalize the CAA for problems in the past is an understandable reaction - I can get that.....but if the cost of that is inhibiting good research now - when we are desperately in need of research dollars - then that cost, for me,... is too high

Its not as if we are drowning in research dollars......its just the opposite and with the budget problems at the NIH its going to get worse...If you want more research into CFS pathophysiology - grit your teeth if you have to and vote for both groups.
<abbr title="Saturday, May 21, 2011 at 1:53pm" data-date="Sat, 21 May 2011 13:53:24 -0700" class="timestamp"></abbr>

 

we are looking pretty solid for the WPI in Chase for $100,000, but specialK82 found another contest we are chasing as well, with equally good money http://www.vivint.com/givesbackproject/overview I think we need to be hitting both

 

Unlike Chase you can vote everyday for the Vivint contest. You have to click on the pacific area to find WPI.

 

mark - I'm kind of confused, I don't know of any research that CAA has done that has hurt us. The CAA has publicallly denounced the work in the UK, etc.

The CAA has funded the Light research and Broderick and Baraniuk. We need these good studies, and many more in order to maximize our chances of getting well. None of these studies are psychobabble BS.

Wow. I'm blown away how short everybody's memory is.

Once somebody treats me the way the CAA has. They are on the outside looking in, as far as I'm concerned. They have shown their colors. I want them out. PERIOD. You keep them in the loop and funded with more dollars and just watch how many more negative studies we get.

Get the CAA OUT, and keep them out. Make it clear. don't get them votes. Don't get them more dollars.:headache: My opinion.

Getting the CAA more money is totally sending mixed messages and keeping them relevant. Their should be "ZOMBIE" protests outside their door, not facebook rallies to get them money.

 

mark - I'm kind of confused, I don't know of any research that CAA has done that has hurt us. The CAA has publicallly denounced the work in the UK, etc.

The CAA has funded the Light research and Broderick and Baraniuk. We need these good studies, and many more in order to maximize our chances of getting well. None of these studies are psychobabble BS.

Here's a few quesitons I would want answered before handing the CAA any more money, even if it is just for "research"

1) define research.

2) Does the CAA have any imput as to how the research is done?

3) who does the research? and who has elected the researchers?

4) What types of research is done, and who defines that?

5) even if all the above are answered, if the CAA does anything else other than hand the money directly to the WPI, it's very questionable if the so called "research" will be in good faith.

My worst nightmare is to have another cooperative diagnostics "research" shananigan going. Or worse yet, another 0/0 "research" study from the CDC. Worse yet, some UK "research" from those barbarians that endorse the lightning process and some CBT/GET rigged psychobabble study.

Plenty of room for things to go wrong. It pretty well established in my mind the CAA is not wokring for the patients and most probably working for the special interests at this point.

All research is not good research. Coffin best illustrated this recently when he found XMRV in an unpublished study then wanted to leave XMRV research behind. He is in the inner circle from what I can tell. All those Clowns need to be thrown under the bus. Even I can remember from the 8th grade science class this flies in the face of basic scientific principles.

 

From the Whittemore Peterson Institute Facebook page:

A 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 organizations are:

(i) the CFIDS Association of America: http://t.co/VZEd5Pk

(ii) the Whittemore Peterson Institute http://t.co/Ev8j2dP

---
ETA: I set up a specific thread to discuss it: http://forums.phoenixrising.me/show...temore-encouraging-people-to-vote-for-the-CAA rather than have a discussion spread over lots of threads.

 

From the Whittemore Peterson Institute Facebook page:

A 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 organizations are:

(i) the CFIDS Association of America: http://t.co/VZEd5Pk

(ii) the Whittemore Peterson Institute http://t.co/Ev8j2dP

---
ETA: I set up a specific thread to discuss it: http://forums.phoenixrising.me/show...temore-encouraging-people-to-vote-for-the-CAA rather than have a discussion spread over lots of threads.

 

From the Whittemore Peterson Institute Facebook page:



---

Links for the two organizations are:

(i) the CFIDS Association of America: http://t.co/VZEd5Pk

(ii) the Whittemore Peterson Institute http://t.co/Ev8j2dP

---
ETA: I set up a specific thread to discuss it: http://forums.phoenixrising.me/show...temore-encouraging-people-to-vote-for-the-CAA rather than have a discussion spread over lots of threads.

Obviously Annette's opinion carries alot more weight than mine.

Some explanation of how the CAA would spend the funds might have allowed me to hold my nose and vote for them on this one occasion. I would just throw them under the bus at a later date after they gave the funds to a deserving organization for research.