CAA is Listening

[oerganix]

Research funding

"Did the CFIDS Association deny research funding to the Whittemore Peterson Institute for XMRV research?
Like most grantmaking organizations, our research policies preclude us from disclosing details about studies that were not approved for funding. This preserves the applicants ability to submit the study to another institution or to revise and resubmit on another round. It is possible to state that at the time of the Associations most recent Request for Applications (March 2008) there were no applications on the topic of XMRV and CFS."

Since the WPI study on XMRV came out in October 2009, and it is now 2 years since the CAA's "most recent Request for Applications", this doesn't really answer the question, does it? A more to the point question would be, did CAA deny research funding, period, to WPI? Of course, CAA has the right to fund, or not fund, any research organization or project it chooses.

All the more reason, for me, to donate to WPI directly, to ask my friends and family to do the same. They don't seem to have the high overhead expenses of administration that CAA has, in collecting, deciding and disbursing donations.

Has it really been 2 years since CAA produced a "Request for Applications"? Is that usual?

 

[kurt]

All the more reason, for me, to donate to WPI directly, to ask my friends and family to do the same. They don't seem to have the high overhead expenses of administration that CAA has, in collecting, deciding and disbursing donations.

oerganix, Is this just a sense you have, or have you actually seen data on the WPI overhead? On another thread this was argued about and it did not appear anyone knew details about the WPI overhead amount.

 

[jspotila]

Since the WPI study on XMRV came out in October 2009, and it is now 2 years since the CAA's "most recent Request for Applications", this doesn't really answer the question, does it? A more to the point question would be, did CAA deny research funding, period, to WPI?

As the FAQ answer states, the Association's research policies prohibit us from disclosing information about the studies not approved for funding. This is consistent with grant-making practices at NIH and most foundations. The Association received 24 applications in 2008, and only funded 6. Beyond that, we can't comment on any denied applications, no matter who submitted them. Any investigator who was denied funding, however, is free to disclose that themselves.

All the more reason, for me, to donate to WPI directly, to ask my friends and family to do the same. They don't seem to have the high overhead expenses of administration that CAA has, in collecting, deciding and disbursing donations.

The Association is very transparent about its finances. I have never seen any data on WPI's overhead. If anyone has it, I hope they will share.

Has it really been 2 years since CAA produced a "Request for Applications"? Is that usual?

The Board of Directors requires that the Association have funding in hand before it makes any research funding commitment. Requests for applications do not come out every year, as a result. I'm happy to pull the actual dates of previous RFAs if that would be helpful.

 

[Cort]

A more to the point question would be, did CAA deny research funding, period, to WPI?

There's no way for the CAA to win here. A. They can't reply. B. If they did reply they'd have to say why - which would mean they'd have to say something negative about WPI. They got 24 applications several years ago and denied 75% of them.

Why not just deal with the CAA's research situation based on what they are funding. The litmus test for the CAA's research program shouldn't be whether they funded WPI research but whether they're funding good research. If you think they're funding worthwhile projects then support them; if you don't then don't.

 

[Cort]

Might as well ask if the WPI is working with the CAA. I'm not trying to hound the WPI or create sides but collaboration is a two-way street.

Dr. Mikovits had an excellent opportunity to inform the CFS research community about XMRV at the Banbury Conference last year. That would have given them the chance to create grant proposals and hit the ground running when the announcement was made but she didn't attend any of the three days of the conference nor did any representative from the WPI. Honestly I really don't understand this. Yes, the fundraiser was that weekend but it didn't last for three days. She could have come in for the last day and given a presentation or if the WPI didn't want to release information about XMRV she could've talked about the WPI's other work. I really don't get this. That was three days of researchers working intimately on CFS - THAT doesn't happen very often.

I think she's great with the patients. She's very inspiring and very helpful.

The CAA will have another conference this year. I assume that she'll show up. If she doesn't then how can you say that that's not a big problem? The CAA is not the CDC. How can one group be boycotting the other's events? Even if researchers have differences or get into tiffs they need to get over them - we need for them to get over them - and communicate. Its such a small field; its really unfortunate, given the resources we have, that these problems occur. I really hope she attends. I assume she will. How can you not attend an event like this?

 

[Cort]

The CAA has won a couple of awards over the last couple of years for its LOW administrative overhead and for plowing donations directly into projects.

 

[justinreilly]

The CAA has won a couple of awards over the last couple of years for its LOW administrative overhead and for plowing donations directly into projects.

That's great to hear. I know I can look this up, but do you know offhand what Kim McCleary's salary is- I've heard it is six-figures and this is too much. If it is six-figures, I'd agree that it is too much considering the minimal political and general awareness results we've gotten.

 

[CBS]

<snip>If you think they're funding worthwhile projects then support them; if you don't then don't.

I've been laying low for a week or so (I have not forgotten about the thread on standards for assessing psychological and behavioral recommendations for CFS patients) but I feel the need to comment on this.

I wholeheartedly agree with Cort's statement that this line of questioning puts the CAA in a no win situation (and would do the same to any other group) . There are questions to which the CAA cannot respond and whether or not the CAA chose to fund the WPI is immaterial as we'll never know the basis for that decision.

I have pointedly and earnestly examined the research the CAA has chosen to support as well as the advocacy efforts (and what I personally view as some errors) of the CAA. If you have mixed feelings about the CAA, you can designate that any donation be used exclusively for research (that in itself sends a message to the CAA).

Personally, I'm impressed with the coordinated research program that the CAA has put together on a shoestring under the guidance of Dr. Vernon. I do hope (and I am optimistic) that in six months time many questions surrounding CFS will be ancillary to what has been established regarding XMRV but I'm not to the point where I am wiling to but all my eggs in that one basket.

A separate question surrounding advocacy in general (including the CAA) is whether or not one group can do it all (research, advocacy, education - patient - physician, etc.). I'm hopeful that the CAA learned something from the issues raised by, and their retraction of, the Alex Howard article on pacing.

I know that I was very reluctant to accept the potential severity of CFS until I was hit by a large number of neural symptoms that left me home bound - at times bed bound. We've all heard stories about the severely ill CFS patients who cannot get out of bed or leave the house but I always viewed myself as being apart (luckily) from that group. I think that as we learn more about the natural course of CFS many could be forced to confront what for me was simply denial that I would soon find myself as part of that most disabled group.

Advocacy groups are staffed by people with their own fears and biases. Organizations are the embodiment of the beliefs (and fears) of those who comprise the leadership of the group. Judging by the CAA's willingness to retract the Howard article (and the discussion on this board that I suspect lead, at least in part, to the retraction), I've wondered if what the CAA (and some here) is going through a process of coming to grips with some of their own fears and denial about the potential severity of CFS.

Advocacy groups must represent all CFS patients. I have not yet concluded that the CAA is necessarily THE group to best represent my advocacy needs as a CFS patient but I was encouraged by their response in removing the Howard article (while it was a mistake to post it, I'm sure that removing it was not uncomplicated or without other less obvious repercussions - and yes, we as patients should be THE top priority).

I have concluded that the collaborative research the CAA is worth funding. I also support other research efforts. I'm still not through asking questions, trying to be constructive, and keeping options open with regards to the questions around advocacy in general. I also think that it is important to recognize that advocacy groups can mature as they work through issues (and some don't).

 

[kurt]

That's great to hear. I know I can look this up, but do you know offhand what Kim McCleary's salary is- I've heard it is six-figures and this is too much. If it is six-figures, I'd agree that it is too much considering the minimal political and general awareness results we've gotten.

CAA website says the CEO salary is below the average for a non-profit in that area. I checked salary.com and the range for an 'Association CEO' that area was about 106K-159K. So average would be around 127K. Maybe something just below that? Would be my guess.

That looks like a lot of money if you are on disability with CFS, but that is just what pay rates are like at that level of credential. I have been part of a small research company and they do pay higher salaries than some other businesses. That is what is expected these days. In fact the average of a for-profit CEO pay is 300K-600K. So nonprofits and very small companies really do pay much less in that comparison.

I am not in any way justifying whatever CAA is paying their CEO, just trying to give some perspective. To get a CEO able to go to DC and represent an Association you probably have to pay. Could the employees of CAA live on less? I don't know the answer to that but I would agree that if they have huge salaries they are definitely not 'taking one for the team' at least in terms of pay. But do we have the right to demand that? I don't know, before my own CFS I would have just said, that's how the market works.

But I suspect most of the major players in the CFS world who are working professionals earn these levels of salary. Certainly Mikovitz and some of the others at WPI are at these same wage levels, if not higher. That is just the way things work in the research world. There are MD specialists in other areas of medicine earning millions of $$ each year. And there are some very good CFS doctors who barely make it financially, while some others probably have very good income.

CFS really changes our perspective about money. I am living on disability now myself, having a good salary is just a memory. I think we can not really compare our reality of living with CFS, with the greater reality of how the economy works. Big money will be required to solve CFS. The truth is that CFS research is criminally underfunded. If we were on an equal footing with other similar illnesses, groups like CAA, WPI, IACFSME, etc., would be managing a combined research, advocacy and patient support budget of hundreds of millions of $$ each year. IF they could pull down that level of funding for CFS, I suppose we would not be talking about their salaries... WPI seems to have had some success in getting govt money, for their new center, maybe the door to a better funded future for CFS will open soon.

 

[Lily]

During the past few months, her salary has been quoted on here at least a couple of times.....don't remember the information source, but it was quoted as $177K.

 

[starryeyes]

I hope and pray every day that the CAA will do the right thing and truly support us. I'm not saying they have to do everything either. I just want them to stop selling us short by "educating" our doctors that CBT and GET help us. I want that material DELETED.

 

[justinreilly]

Are we getting our money's worth with Kim McCleary?

During the past few months, her salary has been quoted on here at least a couple of times.....don't remember the information source, but it was quoted as $177K.

$177K, if that is the case, is too much.

But I suspect most of the major players in the CFS world who are working professionals earn these levels of salary. Certainly Mikovitz and some of the others at WPI are at these same wage levels, if not higher. That is just the way things work in the research world. There are MD specialists in other areas of medicine earning millions of $$ each year. And there are some very good CFS doctors who barely make it financially, while some others probably have very good income.

I understand that professionals like MD specialists who have gone through med school and a residency are paid alot. I am an ivy educated lawyer so i am familiar with professionals' pay. Running an organization is demanding and requires skills and usually a lot of work. So, any CEO salary will be well more than the average worker's. This is because a CEO can add (or detract) a lot of value to an organization. How much is McCleary adding if we are getting what is on our website and the general political and awareness related results? Maybe not much. I am not an expert on CAA. Others please chim in. I will go look for any other threads on McCleary and CAA.

With regard to Kurt's point on professionals and CEOs: professions require extensive education and almost all CEOs have MBAs or are incredibly effective and hardworking. I remember a post by an old ME lobbyist- Roy S (?)- saying McCleary was a secretary before this job. I am not belittling secretaries, but they have to go to school for less of a time, have less education debt, fewer "CEO" and advocacy skills, have generally done less well in school, etc. than a the typical non-profit CEO making $177K. I would not be bringing this up if I thought CAA was doing its job effectively.

 

[Roy S]

FWIW, I didn't say Kim was a secretary.

 

[jspotila]

McCleary's experience

Kim McCleary was not a secretary before Marc Iverson hired her to be the CEO of the CFIDS Association. She was vice president of a healthcare management consulting firm. Kim McCleary is now in her 20th year of service as the CEO of the Association. She has an incredible breadth of knowledge and experience about all aspects of CFS.

Employment matters are (obviously) confidential so I cannot comment further on the subject. Here is the info from the Association's FAQs:

How many staff do you have? Are they paid more than other people working in nonprofits?

The Associations staff is just eight full-time people, working from very modest office space in Charlotte. Two of our staff members, CEO Kim McCleary and chief financial officer Kris Hopkins, have been with the Association for 19 years and three others have 10 years of service or more. This is unusual for the nonprofit sector, where turnover can be high. This longevity is one of the Associations assets and it provides our staff with a deep understanding of the history and the challenges of CFS and the movement. Each year, a committee of the Board evaluates the performance and compensation of the chief executive officer. Our annual audit by an outside firm includes a compensation review according to market and sector norms. The compensation levels paid to our staff members are below regional and sector norms.

 

[justinreilly]

I was wrong; and CAA just doesn't feel right.

Roy S. said:
FWIW, I didn't say Kim was a secretary.

Kim McCleary was not a secretary before Marc Iverson hired her to be the CEO of the CFIDS Association. She was vice president of a healthcare management consulting firm. Kim McCleary is now in her 20th year of service as the CEO of the Association. She has an incredible breadth of knowledge and experience about all aspects of CFS.

Employment matters are (obviously) confidential so I cannot comment further on the subject. Here is the info from the Association's FAQs:

Sorry for posting misinformation and for attributing it to you, Roy.
(I did read this somewhere on the forums, but obviously it's inaccurate).

Thank you, Ms. Spotila (may I call you Jenny?) for the info and listening to my whining!
I am a believer that 'institutional memory' gained from having long time, knowledgable employees is very important, especially when dealing with a very complex, technical and political situation as we have here.

I have nowhere near the knowledge of CAA that you, the other directors, Cort and others have, but to me the situation just doesn't feel right. $178K and we have the overall situation we have, we have the CAA website and public comments by CAA as they are; Susan Vernon (a very good scientist) working for CAA but not speaking out about CDC from an insider's perspective- that silence is deafening.

It's great that CAA has relatively reasonable/modest overhead and exec compensation but the real question is the organization effective under her leadership? And if it's not as good as can reasonably be expected, something must change.

Regarding comparing average industry compensation: it is important info to keep in mind, but not the biggest one. For example, the average lawyer 10 years out of Georgetown Law earns I'd guess $300k. I fit that demographic exactly, but I am unable to produce anywhere near that level of work product so I earn peanuts as a disabled person who can barely work any amount at all. And I do not deserve anymore than the peanuts I make despite the fact that other people 'comparable' on one metric earn say 20 times as much as I. i.e the fact that McCleary is paid below average, is to me, only one factor in the question of whether her pay is appropriate. Obviously, you and the other directors are aware of this point and have considered it, I guess I just wanted to put it out there.

I guess I just want to say, considering all the evidence out there that a well informed (but not insider) pwME such as myself has, the whole situation just doesn't feel right.

 

[rebecca1995]

Jennie wrote of Ms. McCleary,

She has an incredible breadth of knowledge and experience about all aspects of CFS.

I wish Ms. McCleary could take a two weeks off from her job and own family--probably not possible, I realize--to become the full-time caregiver of someone with severe ME/CFS.

Let her be the one to empty that person's commode, cook all his food, help him bathe, push her wheelchair, help her eat. Let her be the one to battle doctors and insurance companies for electric wheelchairs and enough hours of homecare. Let her be the one to deal with disastrous decline after her patient is forced on harmful CB"T" and GE"T" regimens recommended by her organization.

After she's spent a couple weeks seeing first-hand how severe this illness can be, I bet you anything Ms. McCleary would rapidly make the kinds of changes we've been agitating for since last year. These include:

- Focus advocacy on the sickest 25% of PWMEs rather than the healthiest 25% (sarahg)
- Reverse institutional position on CB"T"/GE"T"
- Remove positive references to CB"T"/GE"T" from ALL CAA literature except for a small sidebar explaining these programs are geared to a limited subset of high functioning patients
- Sever relations with Peter White and other British psychiatrists of the Wessely school. They should NOT write CAA policy.
- Reverse any policies resulting from Reeves Era CDC ideology
- Educate phsysicians to become de facto social workers who get necessary services for the homebound and bedbound
- Issue condemnation of proposed psychiatric category(-ies) in DSM-V that overlap ME/CFS definitions
- Publicly denounce somatization and psychiatric models of ME/CFS
...and the many other changes requested eloquently and repeatedly by our members on other threads.

As to her salary, I feel it's too high, especially since we've been told that the Association's resources are stretched so thin that it cannot review and rewrite harmful Spark! material--or even remove this material from from its website. The figure also seems out of touch given the high percentage of PWMEs--including on this forum--who live below the poverty line or who are literally penniless.

I suspect three people getting $60 k per year could accomplish the above in a month.

p.s. Jennie--Thanks, as always, for listening to us. I notice you're the only one from the CAA who has the guts to face us! I don't envy your position.

 

[oerganix]

Jennie wrote of Ms. McCleary,


I wish Ms. McCleary could take a two weeks off from her job and own family--probably not possible, I realize--to become the full-time caregiver of someone with severe ME/CFS.

Let her be the one to empty that person's commode, cook all his food, help him bathe, push her wheelchair, help her eat. Let her be the one to battle doctors and insurance companies for electric wheelchairs and enough hours of homecare. Let her be the one to deal with disastrous decline after her patient is forced on harmful CB"T" and GE"T" regimens recommended by her organization.

After she's spent a couple weeks seeing first-hand how severe this illness can be, I bet you anything Ms. McCleary would rapidly make the kinds of changes we've been agitating for since last year. These include:

- Focus advocacy on the sickest 25% of PWMEs rather than the healthiest 25% (sarahg)
- Reverse institutional position on CB"T"/GE"T"
- Remove positive references to CB"T"/GE"T" from ALL CAA literature except for a small sidebar explaining these programs are geared to a limited subset of high functioning patients
- Sever relations with Peter White and other British psychiatrists of the Wessely school. They should NOT write CAA policy.
- Reverse any policies resulting from Reeves Era CDC ideology
- Educate phsysicians to become de facto social workers who get necessary services for the homebound and bedbound
...and the many other changes requested eloquently and repeatedly by our members on other threads.

As to her salary, I feel it's too high, especially since we've been told that the Association's resources are stretched so thin that it cannot review and rewrite harmful Spark! material--or even remove this material from from its website. The figure also seems out of touch given the high percentage of PWMEs--including on this forum--who live below the poverty line or who are literally penniless.

I suspect three people getting $60 k per year could accomplish the above in a month.

p.s. Jennie--Thanks, as always, for listening to us. I notice you're the only one from the CAA who has the guts to face us! I don't envy your position.

Rebecca, I think your recommendations are excellent and completely reasonable and doable.

 

[MEKoan]

Jennie wrote of Ms. McCleary,


I wish Ms. McCleary could take a two weeks off from her job and own family--probably not possible, I realize--to become the full-time caregiver of someone with severe ME/CFS.

Let her be the one to empty that person's commode, cook all his food, help him bathe, push her wheelchair, help her eat. Let her be the one to battle doctors and insurance companies for electric wheelchairs and enough hours of homecare. Let her be the one to deal with disastrous decline after her patient is forced on harmful CB"T" and GE"T" regimens recommended by her organization.

After she's spent a couple weeks seeing first-hand how severe this illness can be, I bet you anything Ms. McCleary would rapidly make the kinds of changes we've been agitating for since last year. These include:

- Focus advocacy on the sickest 25% of PWMEs rather than the healthiest 25% (sarahg)
- Reverse institutional position on CB"T"/GE"T"
- Remove positive references to CB"T"/GE"T" from ALL CAA literature except for a small sidebar explaining these programs are geared to a limited subset of high functioning patients
- Sever relations with Peter White and other British psychiatrists of the Wessely school. They should NOT write CAA policy.
- Reverse any policies resulting from Reeves Era CDC ideology
- Educate phsysicians to become de facto social workers who get necessary services for the homebound and bedbound
...and the many other changes requested eloquently and repeatedly by our members on other threads.

As to her salary, I feel it's too high, especially since we've been told that the Association's resources are stretched so thin that it cannot review and rewrite harmful Spark! material--or even remove this material from from its website. The figure also seems out of touch given the high percentage of PWMEs--including on this forum--who live below the poverty line or who are literally penniless.

I suspect three people getting $60 k per year could accomplish the above in a month.

p.s. Jennie--Thanks, as always, for listening to us. I notice you're the only one from the CAA who has the guts to face us! I don't envy your position.

Thank you for this excellent post!

I hope it is taken onboard at CAA.

 

[Adam]

CAA

I am always reluctant to comment on US CFS/ME politics - so i won't. But I will say Rebecca made her points in a compelling manner.

My radar went off Rebecca. World domination is perhaps an easier goal than putting the CFS/ME house in order, but nice try.

regards

Adam

 

[jspotila]

I have nowhere near the knowledge of CAA that you, the other directors, Cort and others have, but to me the situation just doesn't feel right. $178K and we have the overall situation we have, we have the CAA website and public comments by CAA as they are; Susan Vernon (a very good scientist) working for CAA but not speaking out about CDC from an insider's perspective- that silence is deafening.

It's great that CAA has relatively reasonable/modest overhead and exec compensation but the real question is the organization effective under her leadership? And if it's not as good as can reasonably be expected, something must change.

I simply cannot comment on anything specific regarding any employee at the Association, including salary and performance review. However, I can say that Ms. McCleary's job performance is reviewed annually by the Board and the Board sets her compensation. The Board Chairman works closely with Ms. McCleary all year long and the full Board interfaces with her at our monthy meetings. There are many measures of the effectiveness of the organization, and each of its programs, and Board and staff pay attention to these. We have annual and long-term targets and deliverables, as well as performance measures.

As you note, this is a very complex, technical and political situation. The plain truth is that the Association cannot do everything that needs to be done with the resources that we have. More resources would let us expand the research program, spend more time in DC trying to pry money from the federal coffers, build a better website, etc. All I can say is that when I look at the numbers and what the Association accomplishes each year, I am amazed that we do so much with so little.