CAA Announcement: Putting Research First

[urbantravels]

This just floated across my Facebook news feed. Not sure what to make of it.

http://www.cfids.org/cfidslink/2011/ftdo-march.asp

From the CEO's Desk

PUTTING RESEARCH FIRST

The CFIDS Association is often referred to as a patient advocacy organization, so you may be surprised to learn that the first check the Association issued was in support of research. Since its founding in 1987, the Association has supported important research into the biological basis of CFS through direct grants to investigators, sponsorship of scientific symposia and meetings, fostering collaborations and, most recently, establishing the SolveCFS BioBank.

For the first several years of our existence, providing direct support to research was the Associations primary activity. In an effort to meet the urgent, important and wide-ranging needs of our community, we expanded our programs. At the urging of benefactors and after other organizations closed, in 1992 the Association took on responsibility for national advocacy and press relations. In 2004, we seized opportunities to conduct health care professional education and public awareness campaigns. We sought to repeat successes achieved by much larger organizations like the National MS Society, even though our resources were sparse by comparison.

Recognizing our resources were spread too thin, our Board undertook an intensive strategic planning process to assess where the Association could make the greatest impact. The outcome? Our strategy to stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment. We went to work immediately to implement this shift in focus, but what we didnt do well was explain these changes to supporters and the larger community.

I take full responsibility for the confusion the inadequate communication about our strategy and focus has created within the community, and outside of it. With an expanded grants program to oversee, a new research network to foster, and the urgent opportunities created by research on XMRV and MLVs, we erred in doing the work without taking the necessary time to talk about our shift in focus. Now the lack of understanding about our organization has prompted questions and criticisms, and we find that we have fallen far behind the curve in trying to convey what the CFIDS Association of America is today. I extend sincere apologies for this breach of understanding and trust.

One message will not sufficiently convey all the ways in which the Association is streamlining its approach. This is the first step in our commitment to be much more intentional in our communications. We will use CFIDSLink, our website and soon a new blog to share news and clear, concise messages about our work. We will respond to questions that have been raised and we will do our best to address new ones as they arise. You count on us to be both open-minded and data-driven in our approach to CFS and we strive to deliver on that expectation. We will stay attuned to the vibrant, diverse, well-informed community dialogue and our actions will be guided by informed strategy and scientific promise.

The Association is intensifying efforts to build a critical mass of rigorous research that validates the biological basis for CFS and leads to improved methods for diagnosis and treatment. A few things to look forward to in the near future:

* We are forming a Scientific Advisory Board of top experts from many disciplines important to the study of CFS to advise our Board of Directors and staff on strategic research opportunities.
* We will issue a new funding opportunity for projects that build on the most promising science to advance objective diagnosis and effective treatment for CFS.
* We will expand the SolveCFS BioBank and our collaborations with other research institutions to make the BioBank an even more robust research resource.

We are transforming from a patient support and advocacy organization to one laser-focused on stimulating and supporting research. Advocacy is still a critical component of our research program, but it will be done more strategically. We will share our content expertise with policy makers and public health officials. We will partner with public, private and commercial funders to expand investment, spur innovation and apply existing knowledge to develop better diagnostics and therapies.

As this months issue of CFIDSLink reflects, it is an exciting time for CFS research, with sustained interest in the role of infectious agents (especially XMRV) in CFS. New technologies like mass spectroscopy are enabling discoveries like the group from University of Medicine and Dentistry of New Jersey published on Feb. 23, 2011, attracting attention from Katie Couric and The CBS Evening News and hundreds of media outlets worldwide. We believe the case definition for CFS must be revisited, and earlier this month, David Tuller, MPH, outlined why in the New York Times. Researchers funded by the Association have important papers at press and we look forward to continuing to share news about the discoveries that our supporters made possible.

On behalf of the Board of Directors and the staff, I express our unequivocal commitment to the mission of this organization and a future in which the life-altering disability, stigma and isolation of CFS no longer exist. We are energized by the decision to return to our research roots. There are many potentially effective approaches to conquering CFS, but with a more intensive research focus, we believe that the CFIDS Association will make a deeper impact and rapidly accelerate progress.

Kim McCleary
President & CEO
The CFIDS Association of America
March 14, 2011

 

[leaves]

Ehhh ???
Well do mostly research but also some advocacy and sorry for the confusion

Right
I guess that's their response to the criticism: we may have sucked at advocacy but that's cause our research is so great. But they still claim their advocacy is very strategic..
This is so weird..
The only thing I can make of it is that patients are confused.
That's right
I totally am.

 

[CBS]

We will partner with public, private and commercial funders to expand investment, spur innovation and apply existing knowledge to develop better diagnostics and therapies.

Wish they had thought to include patients in this list. Clearly "public" does not necessarily include patients as right now they have their own private list of donors that appear to controlling their agenda (I know I'd want a say if I was shelling out $1.3 out of $1.5 million).

And does their new "laser-focus" on research mean that they are going to keep their mouths shut when CNN or NPR comes and asks about something that is over Kim McCleary's head and way over-paid?

From where I sit, this is another lost opportunity and a mediocre attempt to mollify the patient community. My bottom line - I'll know that the organization/board/Kim McCleary recognizes and appreciates the real issue when Kim McCleary acknowledges that as CEO she is doing more harm than good to the organization (and the patients) and she does the right thing by stepping aside. Anything else just looks to me like Kim's highest priority is keeping her excessive salary.

 

[toddm1960]

It doesn't matter what McCleary releases to the public now, having heard from two different sources that behind the scenes she's doing little of the same. I'm sorry for me it's way too late......time for a change. Time for us to move on, the CAA is in far too deep with the CDC for anything good to come about for PATIENTS.

 

[SpecialK82]

I think they are right to determine the clear focus for the association, after all, they can't be all things to all people. This will create the opportunity to do one thing and to do it well. I am very happy that they will be more focused on research and on communication to us, however, I hope that if they are truly stepping back from advocacy it doesn't leave a gaping hole. We will now need to find new ways to all pull together and advocate for ourselves.

 

[WillowJ]

at the moment, CAA has very little "content expertise", but perhaps the new scientific advisory committee could help. More information about who exactly will be on it is needed before making a determination.

In the meantime, I would rather CAA would NOT share information with "policy makers and public health officials" without first vetting such information with us.

 

[urbantravels]

And does their new "laser-focus" on research mean that they are going to keep their mouths shut when CNN or NPR comes and asks about something that is over Kim McCleary's head

That was the first question that sprang to my mind, which this letter has done nothing to answer or clarify.

 

[mezombie]

Nothing new here

I see nothing new here.

The CAA has had a Scientific Advisory Board for many years now. It has put out funding opportunities for scientific research for ages. The Solve CFS biobank will be expanded? Big whoop.

And the CAA has been sharing its "content expertise" for as long as I can remember as well.

This looks like the usual spin we can expect from the CAA.

This organization is so embedded within our US health agencies and familiar to the media that I feel stronger measures are called for.

Please read, sign, and share the Petition to Disassociate from the CAA:

http://www.change.org/petitions/pet...ica-as-our-advocacy-representative#?opt_new=t

We can advocate better on our own!

 

[caledonia]

We will use CFIDSLink, our website and soon a new blog to share news and clear, concise messages about our work.

Once again, this is one-way communication outwards, not dialogue with patients. Have they ever thought to do a survey as to what the patients want and how well they think they're doing things? How about starting their own message board that they read and pay attention to?

Advocacy is still a critical component of our research program, but it will be done more strategically.

I have no idea what this means. This is typical of their "newspeak". They need to keep their mouths shut except when talking about their own research. Period.

I am very happy that they will be more focused on research and on communication to us, however, I hope that if they are truly stepping back from advocacy it doesn't leave a gaping hole.

Nature abhors a vacuum, and I'm confident that if the CAA stopped "advocating" or speaking to the press, some other patient org (MCWPA seems most likely?) would step into or be thrust into the role and hopefully do a lot better job.

 

[Snow Leopard]

The problem is that the funding that the CAA spends on research is just a blip on the radar of the $100+ million dollars that should be spent per year in the USA given the economic costs, quality of life, prognosis and lack of treatment of CFS/ME.

 

[CBS]

The problem is that the funding that the CAA spends on research is just a blip on the radar of the $100+ million dollars that should be spent per year in the USA given the economic costs, quality of life, prognosis and lack of treatment of CFS/ME.

And the part of the reason this damned disease is so underfunded is that the CAA has been playing footsie with the government and taking an advocacy stance of "no fatigued person left behind" while those of with ME have been left to die!

I hope you're enjoying that nice fat salary Ms. McCleary while my wife works her ass off to make sure that after I'm gone she'll still have something left to live on. To hell with you and your fucking attitude of entitlement. You're part of the problem, not part of the solution!

 

[Mya Symons]

"Our strategy to “stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.”
I think I am stating the obvious here, but aren't they forgetting a step? Wouldn't you first have to know what causes an illness before you could effectively detect, diagnos and treat an illness? And, if we first find a legitimate cause of CFS, would we really then need to spend money explaining the disease to doctors, friends and families?

It is interesting that she mentions "revisiting the case definition." Why are they suddenly interested in "revisiting" the case definition? Could it be they are feeling the pressure. Further, the way she words this, she could mean they are just planning on talking about it, nothing more.

This notice seems to me to be a last ditch effort to apease people who were dissatisfied with CAA. The blame for the problems between the CAA and people with CFIDS is being put entirely on "communication problems" rather then actions, or lack thereof. From this letter, it does not look like they are really willing to change anything.

HINT: Strategy = Putting Money into Research to Find the Cause

 

[justinreilly]

Better than before, if they actually do it. Probably won't, imo, but who knows. No mention of cutting her salary of course. At least the damage they do will be somewhat limited if they actually follow this through.

A recommendation to "Revisit" the Reeves criteria is a little weak.

Reading her answers to the FAQs, it just seemed like same old, same old. I find the answers about what she really did incredible in light of the facts.

One example: she claims that she was "so far resisting pressure" from patients to recommend adoption of similar blood regs to those of Health Canada because the AABB's final recommendation that ME patients be 'discouraged', though no banned from giving blood was better than the Health Canada regs where they ban ME blood, but aren't required to ask the donors if they have ME.

That explanation doesn't seem plausible in light of the language that she was "so far resisting pressure" from patients. And anyway, why would CAA advocate for 'discouragement' rather than a ban. Obviously only if they were advocating for the government and against patients.

http://www.cfids.org/cfidslink/2011/march-faq.asp

 

[justinreilly]

The problem is that the funding that the CAA spends on research is just a blip on the radar of the $100+ million dollars that should be spent per year in the USA given the economic costs, quality of life, prognosis and lack of treatment of CFS/ME.

And the part of the reason this damned disease is so underfunded is that the CAA has been playing footsie with the government and taking an advocacy stance of "no fatigued person left behind" while those of with ME have been left to die!

I hope you're enjoying that nice fat salary Ms. McCleary while my wife works her ass off to make sure that after I'm gone she'll still have something left to live on. To hell with you and your fucking attitude of entitlement. You're part of the problem, not part of the solution!

Snow Leopard and CBS, I think you guys nailed the two hugest problems with CAA. No talk of cutting salary, as if that weren't an issue. "Entitlement" is right.

 

[justinreilly]

So McCleary, Vernon and the CFO are going to continue to draw their big salaries while doing LESS work. If they are basically just going to fund research, I would rather have a panel of the science experts from the patient community plus some good researchers all volunteer on a scientific advisory board to select studies to fund and have everyone who wants to fund research donate to WPI and this fund, not CAA.

This would eliminate hundreds of thousands going to three people's salaries not to mention overhead. Of course CAA has more donors to draw on than we do, but at least part of the money will be put to better use. Maybe then CAA's donors can be convinced to switch funding to this fund. Anyway, those donors should be persuaded to switch right now to funding WPI. I am glad some people like charityfundraiser are on the case of finding out who CAA's donors are.

 

[justinreilly]

McCleary violates all of these leadership no-nos (except perhaps being obsessive- don't know if she is- and letting the success of an org go to your head). Notice 'not working hard enough' and 'not kissing CDC's ass' were not on the list of CEO mistakes to avoid:

http://www.youtube.com/watch?v=iiorMUkqqDY

 

[In Vitro Infidelium]

McCleary violates all of these leadership no-nos (except perhaps being obsessive- don't know if she is- and letting the success of an org go to your head). Notice 'not working hard enough' and 'not kissing CDC's ass' were not on the list of CEO mistakes to avoid: http://www.youtube.com/watch?v=iiorMUkqqDY

Being an non US resident I may be intruding on private grief here, but it seems to me that the CAA is a product of the US non profit system, rather than it being especially malign. The US lacks any cohesive statment of legal expectation of what a non profit should do, beyond the very limited requirements of the IRS code (it says a lot but doesn't actually require much in the way of performance) and the legal position seems to be that the performance of non profits is purely a matter for the donors, in the same way that the behaviour of 'for profit' corporations is a matter for shareholders. In this context power is with the Board and the largest donors/investors and it is this dynamic that drives the development of each organisation.

The CAA anounced its intention to change when it stated:

In 2009 the Association announced a decision made by the Board of Directors to consolidate its support structure and eliminate a rather confusing distinction between members of and donors to the organization. This change reflected a broader trend in the nonprofit sector in which membership-based charitable organizations were giving way to donations-based organizations. Membership structures are now almost exclusively utilized by professional societies or educational institutions, like bar associations and alumni groups. The North Carolina Secretary of State approved amended Articles of Incorporation formally revising the Association’s structure on April 28, 2009.

Beginning June 1, 2009, anyone who made or makes an annual gift of $35 or more receives our print publication, SolveCFS, three times a year. Our monthly e-newsletter, CFIDSLink, is free to all. An advantage to the change to our structure is that donations are fully tax-deductible, whereas membership dues were not (according to current IRS code).

So the CAA is an 'Association' whose 'associates' are those who make a donation to CAA. The associates having no voting power and the Board is in effect a self perpetuating entity. Whether any of this 'serves' the cause that CAA espouses is an open question, but it is reflective of the wider role of non profits in the US. Member empowered organisations have their draw backs but on balance when it comes to advocacy, the legitimacy afforded by member empowerment has an important function both in energising members and supporters, and in generating credibility with media and officialdom.

The problem for M.E/CFS affected people is that a large number do not accept that any organisation which does not adopt their very particular interpretation of what the illness(es) involves, can be legitimately representative of M.E/CFS affected people; the result is that the media and officialdom are frequently confronted with a disparate and barely articulated set of conflicting messages that provide no basis for reasoned representation or active response. Wishing to treating the CAA and CDC as 'the enemy' may be understandable but it only further confirms 'their' position of talking to each other as the only option for 'mutual legitimacy'; breaking that self interested bipolar monopoly will require something far more subtle than simple 'attack'.

IVI

 

[justinreilly]

Like what?

 

[justinreilly]

Well, I don't think people are happy with the data I post because it refutes their arguments against the CAA. As a medium-sized donor to CFS research, I can tell you that I am willing and prefer to pay for overhead. I'd venture a guess that the bigger the donor, the more this is so. When people are shelling out 10k or 100k, they do their research. If they wanted to fund the WPI or other organization, they would. The WPI has salaries and overhead as well. It's just that the Whittemores pay for it.

Well yes, but when someone donates to CAA for research, there is a double cut for overhead and salaries, from CAA and the grantee of research funds. Eliminating CAA would eliminate a lot of overhead.

 

[In Vitro Infidelium]

The WPI has salaries and overhead as well. It's just that the Whittemores pay for it.

It is very misleading to say that "the Whittemores pay for it" . The most recent figures available (2009) shows that income derived from $600, 000 in Government Grants, $324,720 in fund raising and $287, 204 other sources. The Whittemore Family Foundation has donated a total of $309,000 to WPI in the years 2007-2009. The Whittemores pledged $5 million to the building of the $77 million MM Centre, where WPI is based, although only a little over $1 million of this pledge was actually drawn down by the project managers. The Whittemores have certainly funded WPI, but they certainly do not 'fund it', indeed the US Government at $1 million in the years 2008 and 2009, has committed three times the amount the Whitemores have to the actual operation of the WPI.

IVI