Caa poll

[justinreilly]

Please check out my new blog post, Who Benefits?

Who Benefits Enough from What CAA does to Want to Give them $1M per Year?

http://forums.aboutmecfs.org/entry.php?833-Who-Benefits


I find the whole anonymous donation thing very strange. My Dad was an executive director of a non-profit recently and with them and everywhere I've ever interacted with non-profits, they make the list of donors very prominent as a way of saying thank you to the donors. And they will list anonymous donors as "anonymous" on the donor list and they usually only make up a pretty small percentage of big donors. Rich people who give a lot of money to a good cause that they could have spent on themselves usually want to be recognized for doing such a good thing.

In NYC, where I'm from originally, there is a whole circuit of fundraising parties where people pay thousands of dollars each to attend a party. Most donors would rather go and celebrate and be recognized for donating than to give anonymously. It's considered probably the main way to 'rise in society'. That may sound ridiculous but for a lot of people donating a lot of money and going to these parties and being on Boards of Directors of non-profits is the way to be in the world of the rich socialites.

So the fact that the donors to CAA don't want to be named is very strange. What are the plausible and probable scenarios? The vast majority of patients, at least the ones who participate on ME communities on the internet, are extremely dissatisfied with CAA. The average pwME doesn't have any spare cash to donate to a charity, even if he loved it. The CAA revenues are now about $1M per year, down from much more over 20 years. Let's say that there are 1,000 pwME who donate an average of $50 per year; that's $50,000. They get some money from a bike race, say $10,000. They get some money from the state of NC, say $20,000. Add those, it's $80,000, round up to $100,000 and we still have $900,000 unaccounted for.

It's unlikely that all this money comes from one eccentric donor who is extremely wealthy, is out of touch and thinks CAA is that deserving. Let's say there are four people each donating $100,000 and twenty people each donating $25,000. Are there really 24 people out there who have ME or whose relatives have ME that would donate that much to an org that is so disliked by patients? Do all twenty four of these people really want to be anonymous for doing such good deeds? That seems very unlikely to me. pwME tend to want to socialize, share and bond with each other, I think, since we are so misunderstood and treated badly by a lot of the rest of the world. And, though there are many pwME, it seems to me that the involved people tend to be a small world, since there are not a lot of doctors, scientists, philanthropists, celebrities involved. So it seems like the big donors would be out and involved with the 'community' like the Whittemores are. Or if they aren't, it would be obvious who these people are.

Laura Hillenbrand is supposedly a significant donor. That's one. OK. Who else?

Things seem fishy to me. How does CAA get $1M per year? Who is the satisfied customer(s) who think they are worth the price? Not patients I would think. Well who benefits from the way CAA acts? Insurers, NIH and CDC. Obviously these entities would want to be anonymous if they donated. What do people think?

 

[Ernie]

Please check out my new blog post, Who Benefits?

Who Benefits Enough from What CAA does to Want to Give them $1M per Year?

http://forums.aboutmecfs.org/entry.php?833-Who-Benefits


I find the whole anonymous donation thing very strange. My Dad was an executive director of a non-profit recently and with them and everywhere I've ever interacted with non-profits, they make the list of donors very prominent as a way of saying thank you to the donors. And they will list anonymous donors as "anonymous" on the donor list and they usually only make up a pretty small percentage of big donors. Rich people who give a lot of money to a good cause that they could have spent on themselves usually want to be recognized for doing such a good thing.

In NYC, where I'm from originally, there is a whole circuit of fundraising parties where people pay thousands of dollars each to attend a party. Most donors would rather go and celebrate and be recognized for donating than to give anonymously. It's considered probably the main way to 'rise in society'. That may sound ridiculous but for a lot of people donating a lot of money and going to these parties and being on Boards of Directors of non-profits is the way to be in the world of the rich socialites.

So the fact that the donors to CAA don't want to be named is very strange. What are the plausible and probable scenarios? The vast majority of patients, at least the ones who participate on ME communities on the internet, are extremely dissatisfied with CAA. The average pwME doesn't have any spare cash to donate to a charity, even if he loved it. The CAA revenues are now about $1M per year, down from much more over 20 years. Let's say that there are 1,000 pwME who donate an average of $50 per year; that's $50,000. They get some money from a bike race, say $10,000. They get some money from the state of NC, say $20,000. Add those, it's $80,000, round up to $100,000 and we still have $900,000 unaccounted for.

It's unlikely that all this money comes from one eccentric donor who is extremely wealthy, is out of touch and thinks CAA is that deserving. Let's say there are four people each donating $100,000 and twenty people each donating $25,000. Are there really 24 people out there who have ME or whose relatives have ME that would donate that much to an org that is so disliked by patients? Do all twenty four of these people really want to be anonymous for doing such good deeds? That seems very unlikely to me. pwME tend to want to socialize, share and bond with each other, I think, since we are so misunderstood and treated badly by a lot of the rest of the world. And, though there are many pwME, it seems to me that the involved people tend to be a small world, since there are not a lot of doctors, scientists, philanthropists, celebrities involved. So it seems like the big donors would be out and involved with the 'community' like the Whittemores are. Or if they aren't, it would be obvious who these people are.

Laura Hillenbrand is supposedly a significant donor. That's one. OK. Who else?

Things seem fishy to me. How does CAA get $1M per year? Who is the satisfied customer(s) who think they are worth the price? Not patients I would think. Well who benefits from the way CAA acts? Insurers, NIH and CDC. Obviously these entities would want to be anonymous if they donated. What do people think?

Any money from the government would have to be accounted for as it comes from the taxpayers. I would think donations would come more from the psych people, insurance companies, or drug manufacturers.

 

[quanked]

Okay. I have been out the game (non-profits/public agencies) so I may be so very incorrect here.

First, CAA is a non-profit .org organization and I assumeit has a 501(c)(3) status with the IRS. They have a board of directors and possibly an advisory board. Given that they have the IRS status they have I am almost certain that finding out who the donors are should not be an issue in most cases.

What is their mission statement and are they in compliance with it (I posted it below)? I would like to see their strategic plan for the next several years. If they are not in compliance there could be some problems.

Another avenue is the Freeedom of Information Act to discover who the donors are. [FONT=Verdana,Arial,Helvetica]
http://www.sec.gov/foia/nfoia.htm
[/FONT]

Harley indicated that they are not an association. However the word "association" is in their moniker. Am I missing something? I often do so if I am aksing the obivious be kind please.

Anyhow, I offer my comments for whatever they are worth.

[FONT=Arial,Helvetica]About Us [/FONT]
The CFIDS Association of America is the largest and most active charitable organization dedicated to chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS). Since 1987, the Association has invested more than $28.1 million in initiatives to bring an end to the pain, disability and suffering caused by CFS.

Our Mission:
For CFS to be widely understood, diagnosable, curable and preventable.
Our Strategy:
To stimulate research aimed at the
early detection, objective diagnosis and effective treatment of CFS through
expanded public, private and commercial investment.
Our Core Values:
To lead with integrity, innovation and purpose. ​

The CFIDS Association offers information and resources to patients, family members, caregivers, support groups, media professionals the general public and health care professionals. The Association is proud to lead national efforts in research, public policy and communications that will advance understanding, diagnosis, treatment and prevention of CFS. We are grateful to all those who support our vital work.

 

[dipic]

Voted for "Caa needs to change direction and leadership." It's pretty clear from the polling that the majority (among us, at least) believe the CAA to be a joke in it's current state.

Also signed the recent petition that was created by Khaly Castle. It will be presented to the NIH and CDC, and the CAA at the May 2011 CFSAC meeting.

Please sign it if you believe some serious changes with the CAA need to be made. You can sign it here: http://www.change.org/petitions/pet...ion-of-america-as-our-advocacy-representative

 

[Snow Leopard]

“Early life adverse events—abuse, neglect, long-term malnutrition—can really mess us up and change the architecture of the brain,” says the CDC’s Vernon.

Apart from the obvious, my main problem with this is that it is pseudoscientific.


As far as anonymous funding goes, it doesn't necessarily suggest a conspiracy. It could be as simple as a single rich donor with a CFS sufferer in the family, whom doesn't want media attention.

 

[CBS]

As far as anonymous funding goes, it doesn't necessarily suggest a conspiracy. It could be as simple as a single rich donor with a CFS sufferer in the family, whom doesn't want media attention.

This may be the case but what is becoming impossible to ignore is that the CAA is representing who ever is paying their salaries and they don't appear to feel they have any responsibility to the large number of patients who feel unrepresented by the CAA and apparently there is even less interest in growing the funds they have available by actually responding to the concerns of patients with ME.

 

[raven]

To echo a sentiment posted earlier, it is not good to contact news agencies and tell them CAA does not speak for us. It makes us look bad. Instead, tell them who does speak for us. The negative approach almost always backfires.

I think that reporters can be told the CAA doesn't represent us without it coming off as negative. If you disagree with their advocacy why not say it, give your reasons, then give other names or organizations to speak with and tell them why they'd be better choices to represent us?

Patients have tried to talk with the CAA but they're not listening. I don't want GET and CBT to be the next source of "treatment" I'm offered in the US, the patients in the UK say it doesn't work. I want more science, not psychology. Individuals and groups are taking the initiative to demand better representation. I don't think anger has to be hostile - it can be the catalyst for change. The AIDS patients got angry - ACT UP NY says, "ACT UP is a diverse, non-partisan group of individuals united in anger and committed to direct action to end the AIDS crisis."

http://www.change.org/petitions/pet...ica-as-our-advocacy-representative#signatures

 

[justinreilly]

Apart from the obvious, my main problem with this is that it is pseudoscientific.


As far as anonymous funding goes, it doesn't necessarily suggest a conspiracy. It could be as simple as a single rich donor with a CFS sufferer in the family, whom doesn't want media attention.

This may be the case but what is becoming impossible to ignore is that the CAA is representing who ever is paying their salaries and they don't appear to feel they have any responsibility to the large number of patients who feel unrepresented by the CAA and apparently there is even less interest in growing the funds they have available by actually responding to the concerns of patients with ME.

Snowleopard, Do you really think it's likely that one person is donating something like $900K a year every year to CAA and we have no idea who that might be? The ME world is small enough that there would at least be rumours that that was the case and who it might be.

CBS, I agree 100%; the fact that they have very little interest in at least placating patients and compromising, much less actively building the support of patients in order to increase their patient donations, makes it quite plausible to me that they are funded substantially by 'the enemy'.

 

[justinreilly]

The poll results as of now on mecfsforums.com. More negative on CAA than PR, as would be expected:

http://www.mecfsforums.com/index.php/topic,5817.0.html

How do you feel about The CAA?

CAA is doing great!............................................................................ 2 (4.7%)
There are some problems, but no drastic changes are needed................0 (0%)
CAA needs to change direction.............................................................0 (0%)
CAA needs to change direction and leadership.....................................19 (44.2%)
CAA needs to disappear from the planet (or more extreme & violent desires)...........................22 (51.2%)
No opinion.........................................................................................0 (0%)

Total Members Voted: 43

 

[justinreilly]

Please check out my new blogpost on CAA and Jennie Spotila's reaction to us:

http://forums.aboutmecfs.org/entry.php?836-Loyalty-to-CAA-not-McCleary

 

[justinreilly]

According to John Herd:

[CAA] have reportedly been very aggressively speaking and acting behind the scenes to blackball WPI from meetings, government committees and grant funding.

http://johnherd.wordpress.com/2011/03/01/the-transforming-faces-of-the-cfids-association-of-america/

 

[jacqui39]

Why have CAA denied this illness? Is it because contaminated vaccinations and GER warfare may be involved? What is the link up to Lyme disease of which many ME sufferers are now being found to test positive for and US have admitted Lyme is a GERM warfare agent!

 

[Anne]

I don't think you can have it both ways.
.....
If you're going to decide to stop supporting the CAA because of their advocacy problems then you're going to pull the plug on their research efforts as well.

You've essentially decided that their inadequate advocacy outweighs any impact their research might bring.

I support the Research Network and the Biobank because I believe that, outside of XMRV, they have more potential to impact my life than any other CFS research effort that I know of. I love the research....I read it avidly and its what moves me the most and that's why I stick with the CAA despite all these other problems. I'm really so tired of them kicking themselves and that project in the teeth. I wish they could just get out of their own way.

I think Cort is right in this. In spite of their mistakes, the CAA is making an impact in the research field, and in this I don't think any other current organization could replace them, at this point in time.

So I'll stick with them too, and I look forward to seeing what the Research Network, the Biobank and their funded projects can do. Let's look at both the good and the bad.

 

[CBS]

I think Cort is right in this. In spite of their mistakes, the CAA is making an impact in the research field, and in this I don't think any other current organization could replace them, at this point in time.

So I'll stick with them too, and I look forward to seeing what the Research Network, the Biobank and their funded projects can do. Let's look at both the good and the bad.

Outside of the researchers who receive seed money from the CAA, if the Biobank and the rest of the CAA is run as poorly as their public education campaign, we''re getting very little bang for our buck.

How many people have actually had blood drawn and stored with the BioBank?

How did they do on their "$5million by 12/31/2010" campaign? Did they even come close? In a year when XMRV had drawn so much attention to CFS, aside from outside money being directed at XMRV, how much did the CAA raise?

 

[justinreilly]

I think Cort is right in this. In spite of their mistakes, the CAA is making an impact in the research field, and in this I don't think any other current organization could replace them, at this point in time.

So I'll stick with them too, and I look forward to seeing what the Research Network, the Biobank and their funded projects can do. Let's look at both the good and the bad.

I think every dollar sent to WPI does us more good than one to CAA for research.
(1) no middleman taking a big cut, (2) excellent science (3) in the most impactful areas- XMRV and cancers (4) better 'messages' coming out of them and (5) a huge one for me- use of Canadian Consensus Criteria. Why send money to CAA when they're not even going to use CCC for their studies and biobank (and even for patients on its website)? it's ridiculous.

 

[Emma]

I deeply appreciate the CAA's work: first and foremost the resarch, but also among other things the regular newsletters and updated information, the analysis of various studies (most recently the spinal fluid study, where I thought they provided a great analysis and background), the webinar series, and so on.

In contrast to some of you, I get the impression that CAA is solidly in the biomedical camp. When I saw Kim McCleary's comments in the media after the PACE publication, my reaction was: "this must be a typical journalist cut-out of a small part of a long conversation", which is what media does. Everyone who has been interviewed knows how this works; how hard it is to get your message through when the journalists already have their mind made up. They will talk to you at length, and then cite one sentence right out of context. It has happened to me numerous times.

I think we need to look at all the CAA are doing and make a our judgement based on the entirety. And then of course accept that we'll make different judgements!

 

[Andrew]

I think the CAA does whatever suits them, regardless of whether it helps patients. So, for example, they promoted research they knew was based on a faulty data set, but did it because it was part of a money making deal they had entered into with the CDC. This is not a rumor, btw. CAA staff confirmed that the information was required because of their contract. So now their contract is over, and if it happens to benefit them to help us, then they will do it. But if it benefits them to shaft us, they will do that too. And I will believe this to be true until I see evidence of an internal culture shift in CAA. And so far I've seen nothing except CYA.

 

[justinreilly]

Say what you think about CAA (and other orgs) where it will have a real impact- rate on guidestar.com and charitynavigator.com. Very easy way to have our voices heard! Pls write a short review, everyone!


CAA:
http://www2.guidestar.org/organizations/56-1683450/cfids-association/review.aspx


http://www.charitynavigator.org/index.cfm?bay=search.reviews&orgid=6512


WPI:
http://www2.guidestar.org/organizat...erson-institute-forneuro-immune-diseases.aspx

 

[justinreilly]

Important reminder: see my last post immediately above and please write reviews for CAA and WPI! You can make a difference!

The following is just a review of a non-profit book i saw on Amazon, but it struck a chord with me. I'd like to go back in time and tell Marc Iverson this:

http://www.amazon.com/Starting-Buil...tBy=bySubmissionDateDescending#R314JUIXU1MUB9

By Amazoner "reader, thinker, doer"
This review is from: Starting & Building a Nonprofit: A Practical Guide (Paperback)
...
"What makes a good board"... In practice, the key thing about your board is not to let the CEO, COO, or other charismatic operational people to dominate the board. Also, control the board membership so as to avoid power plays by people... As well, the CEO and other operational people should be "at will" employees under your control. If you are paying their salaries, don't let them take over and throw you out.

Will all these horrible things happen to you? Not necessarily, but they happen quite often in these organizations, so you must structure things to avoid a power struggle... Non--profits are full of crazy people who act out their inferiority with power and control activities.

 

[justinreilly]

CAA has gone way too far once again

CAA's attitude of "XMRV is not related to ME, case closed" is absolutely unacceptable. CAA needs to dissolve; it is acting against bona fide science and patients far too often to be considered a non-profit and thus is operating unlawfully, in my opinion.