CAA Announcement: Putting Research First

[asleep]

I just want to remind people of this thread where currently 90% believe that the CAA needs a new direction and new leadership.

This attempt to placate with words, graciously brought to us plebeians from high atop Mt. McCleary constitutes neither of these desired changes.

Too little, too late.

 

[Cort]

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.

I think the most important the CAA can do is foster better research. And they have SOLID track record here. They were the only ones to fund the Pacific Fatigue Lab's repeat exercise studies - and those findings are changing how people research this disorder. The inclusion of stress tests such as exercise should dramatically increase the speed at which CFS is understood; look at the dramatic difference between between CFS patients and controls at baseline and after exercise in the Light study. This study would have been a failure if they hadn't done that.

The CAA has also funded projects that have ended up in major NIH grants (very rare) to study endogenous retroviruses and mitochondrial problems in the brain.

They are also funding projects that examine vascular function, reductions of blood flow to the brain, the gut microflora and others. A study is coming out showing tht probiotics can reduce CFS patients anxiety and help with sleep.

The most important initiative the CAA is engaged in though is the Research Initiative and Biobank - which will provide well-characterized samples researchers can quickly use in their studies cutting down costs and time. The CAA for instance could use the blood samples they've gathered to look, at some point, for the proteins identified in the spinal fluid studies. Being able to do that is a huge help for CFS patients.

Someone just gave me this in an email

We are currently engaged in a much larger research effort where we are looking at as many detectable metabolites (including lactate) to try and understand the underlying metabolic differences in CFS.... It is taking us a while to collect our samples but we do anticipate our analyses will be complete later in the year.

I recognize that many people are upset at the slow and rather anemic nature of the CAA's advocacy efforts but they are laying the groundwork in the research field for rapid progress. They might not be as noticeable as the advocacy stuff but with the Biobank and Research initiative they are essentially building an infrastructure for rapid results.

 

[Cort]

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.

I think this is one thing that everybody wants. As I pointed out in a former post the CAA actually did note most of the problems with the PACE trial that everybody else did - they noted the problems with the cohort, with meager findings, with the lack of biological data gathering, etc. they just did so in an ineffective manner. Hopefully they will communicate better in the 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.

This is all good stuff! You may not like the CAA in some areas but this is good stuff that benefits everyone. Collaborating with more research institutions is big! Above all we need to bring more researchers into the field.

 

[CBS]

I think the most important the CAA can do is foster better research.

As much of a fan of research as I am, I have to disagree with you on this. THE most important thing the CAA need to do is to stop causing harm. Harm that is caused by trying to straddle to "fatigue advocacy fence" that sends two messages (even if all you consider is the impact on research funding - leaving aside the desperate financial and medical situations with which many ME patients must contend - and those are huge things to leave aside):

1. To the patients - The CAA is running off to do research on something they don't understand (and they are killing themselves with regards to support from the patient community).

2. To potential foundations - CFS is not that serious (you know, "a life sentence, not a death sentence" - and that it belongs in the same ballpark as TMJ) and to foundations, etc. as well - we're more than a bit confused about what we think we're studying and who we represent and we have astronomical overhead for a non=profit of our size with an overall trend of declining revenues and membership.

Failed leadership and no stomach for dealing with that central issue.

 

[urbantravels]

I agree that supporting a diversity of research efforts is crucial. It's not enough to just say "Well I'm just going to give 100% of my donation dollars to WPI because I like them better/they're the only organization that really cares about us/Dr. Judy is a rock star" etc. etc.

It does concern me that WPI is putting all their eggs in the XMRV basket. I'd still like to see XMRV pay off; but even if it does, it is becoming increasingly clear that it's not going to do so for a good long while.

In the meantime, we most definitely need the other lines of research to be pursued rigorously. I wish, instead of having a once-a-month patient donation drive for WPI exclusively, that each month a different research effort could be the beneficiary. The Pacific Fatigue Lab is still operating on a shoestring; we desperately need confirmed biomarkers ASAP for a whole variety of reasons, including making other research more robust, helping patients get needed treatments and benefits, etc.

I wouldn't put all my money in one stock no matter how hot I thought it was; I have enough common sense to know why it's important to diversify. If the CAA has helped with "seed money" for those diverse research efforts in the past, that's great. I do think it's worth asking whether they will continue to be the best way for donors to get money to the best researchers. It's naive to think there should be no overhead involved in any organization; but it's worth comparing overhead to benchmarks for other organizations of similar size and budget, and also asking the hard questions about the effectiveness of the organization overall.

 

[Hope123]

Other than money from donors, the other big asset the CAA has is its access to subjects for clinical trials -- you, me, others with ME/CFS. This asset is actually key if their goal is research as recruitment of subjects can be time-consuming and expensive; indeed some studies (in general and not just ME/CFS-related) never get off the ground because they didn't get the required number of subjects. With ME/CFS, you also have to factor in subject concerns about what the study is going to be about and how it will be used, given how some studies have not helped and even hurt people with ME/CFS. Trial participant trust is important. I don't have an issue with the goal of research itself but the CAA needs to make this absolutely spotlessly clear and this statement is a dollar short and a day late. They need to continue to do better if they want to regain the trust of the ME/CFS community.

 

[In Vitro Infidelium]

Sheesh, then add in "the Whittemores pay for a lot of it." 300k is 300k. 1 million is 1 million. But who pays for it wasn't even the main point. The point is that any organization has salaries and overhead. Somebody pays for it. Even if it's volunteers, the volunteers are paying for it with their free time. For example, if Mrs. Whittemore and Andrea both work for free, they are providing over 200k/yr. worth of what would be salary and overhead for any other organization. But thank you for providing the data. It saves me some time digging it up. When I donated to the WPI, they said that 100% of donations were going to fund research. That can only happen if overhead is being funded by someone else or if overhead is included in that 100% or if the overhead work is being done for free.

Valuing all work, both voluntary and paid, is certainly important to understanding the costs of an organisation; though your argument does rather support the point that justinreilly makes, that a direct donation to WPI is more efficient in terms of getting more money per dollar donated into research compared to donating to the CAA.

But all of this is context sensitive, both yours and justinreilly’s positions are dependent on outputs for any actual test of efficiency. In the case of the CAA efficiency can not be measured by the simple equation donations/amount given to research; the CAA has the potential to influence wide research interest, for example rather than fully funding a single research project to be carried out by one institution, it could offer multiple partial grants on the basis of matched funding. In that case the efficiency of the CAA would be measured by the success of generating multiple projects, a measure that could not be applied to WPI.

In the case of the WPI ‘no fee’ President, efficiency is rather more difficult to measure – zero dollar cost may not equate to efficiency. Using like for like valuation ( $100k equivalent CEO salary non profit standard ?) is not helpful because it does not measure any out-turns – a salaried CEO who fails to perform will (should) get the sack, what happens where there is no salary cost to equate to performance and justify the employment of a replacement ? As of 2009 AW states she works 40 hours per week at WPI, but is that 40 hours well used ? How does that 40 hours affect the efficiency of the whole organisation ? Would a paid CEO impart greater efficiency to the use of the resources available to the organisation as a whole ?

On the face of it with just a $1.2m revenue budget and an Executive Director earning over 15% of that sum, it would be difficult to see why a President/CEO would command more than a part time position rated at 5% of revenue - $60k salary. Ultimately though the issue of efficiency at both the CAA and WPI is not a matter of numbers (however one wants to re-arrange them) it’s a matter of who does the measuring of efficiency and both organisation suffer the same lack of objective oversight of their respective senior player. In the case of the CAA this issue is could be easily resolved simply by splitting the role of President and CEO, leaving the Board clear to make unhindered judgement of the CEO’s performance. In the case of WPI there is no independent board and it’s difficult to see how organisationally, objectivity can be introduced.

IVI

 

[justinreilly]

I agree that supporting a diversity of research efforts is crucial. It's not enough to just say "Well I'm just going to give 100% of my donation dollars to WPI because I like them better/they're the only organization that really cares about us/Dr. Judy is a rock star" etc. etc.

It does concern me that WPI is putting all their eggs in the XMRV basket. I'd still like to see XMRV pay off; but even if it does, it is becoming increasingly clear that it's not going to do so for a good long while.

In the meantime, we most definitely need the other lines of research to be pursued rigorously. I wish, instead of having a once-a-month patient donation drive for WPI exclusively, that each month a different research effort could be the beneficiary. The Pacific Fatigue Lab is still operating on a shoestring; we desperately need confirmed biomarkers ASAP for a whole variety of reasons, including making other research more robust, helping patients get needed treatments and benefits, etc.

I wouldn't put all my money in one stock no matter how hot I thought it was; I have enough common sense to know why it's important to diversify. If the CAA has helped with "seed money" for those diverse research efforts in the past, that's great. I do think it's worth asking whether they will continue to be the best way for donors to get money to the best researchers. It's naive to think there should be no overhead involved in any organization; but it's worth comparing overhead to benchmarks for other organizations of similar size and budget, and also asking the hard questions about the effectiveness of the organization overall.

I do want to see some diversity of research (ie not all ME research be done on XMRV). This would still occur if money were donated to a no- or low-overhead org like the one I described. I also think that the proportion of overall ME research money that goes to XMRV research is good since it is very important and not enough of it is being done as it is. There is probably a certain level of funding for WPI, below which it is very possible that XMRV science as it relates to ME will be crushed by the superiority in funding of the anti-science forces' PR machine (as in the case of DeFreitas). I don't think WPI is that low in funding now, but I personally really don't want to take a chance on it.

I do think there is something to be said for the 'let's fund WPI because they are the only ones that stick up for us, Judy is a rockstar' impulse. I want to show my support to the people who really support us. But more vitally, giving money to CAA as opposed to WPI strengthens CAA even if the money goes soley to research. I assume some of this money goes to Vernon's salary.

Additionally, even if it didn't, money flowing through CAA gives it power. Researchers will be more hesitant to criticize CAA and the positions of CAA if it will affect their funding chances. So, for example, a scientist who hopes to get funding from CAA, when testifying before CFSAC or speaking to a reporter may be more hesitant to say that the Reeves Definition, GET and the name "CFS" are terrible since this would make CAA look bad. And we desperately need more scientists and clinicians to speak out for us.

Also, I think it's been shown that very public embarrassment and hugely declining revenues are the only things that make CAA listen to patients.

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.

This is the same for any funding organization.

Not a volunteer org that funds research, like the type i spoke about, eg CBS's research fund. And not if you donate directly to WPI (to fund WPI's research).

I understand how it sounds like it supports the volunteer argument. However, the way I look at it is, if the volunteer's work is really worth whatever amount, say 100k, then since they could be working somewhere else and being paid that 100k, then they are in equivalent donating 100k to the organization they are volunteering for. If they weren't volunteering, they could be making 100k or more and donating it to the same organization. If they couldn't make 100k as their opportunity cost alternative, then their work probably isn't really worth 100k.

I could spend 100 hrs/yr volunteering or 100 hrs/yr making money some other way and then donating that money to the organization to employ someone else better to do the same job. For most people, their skills and background and best use of them do not happen to coincide with running a non-profit that happens to fund research into their illness. So I think it is more optimal to do what you do best and then donate more money's worth for someone else to do the job.

It's not only about efficiency. In the end, I will donate to fund the type of research I want to fund and which I judge to be most scientifically sound.

In the end, donors can't donate to "rathers". Get the volunteer group running, and then we can even consider it. If I'm supposed to consider donating to the WPI as a grant funding organization, are they even interested in taking this role? And first, I'd like to know how much research funding they granted to the projects listed on their "other research" page on their Web site.

That is a good point I think about the volunteer donation, but I still think donating to an org where the top brass donate their time is better. I also just think that CAA is plain inefficient and wastes money. Big salaries. High travel ($47K) and other overhead costs. And overall bad results.

I don't think anyone is suggesting WPI be a grantor. I think people are talking about donating to WPI to fund WPI's own research.

 

[CBS]

The video of Dr. Montoya's recent talk has received a large amount of praise. Cort described it as "Straight Talk." Especially memorable were his comments that he hope to see the day when the CFS patient community receives an apology from the medical community for their neglect and abuse. There are several other key words in his talk such as shame, that were directed at his colleagues, not the patients.

To make a long story short, this type of language should not sound foreign at all to a group of patients as sick as we are who have been so severely neglected by the government and medical community.

I'm not fan of the CAA or Kim KcCleary and while Suzanne Vernon states that she recognizes the importance of the fundamental concept of tight cohorts, I hear language from both McCleary and Vernon that often seems to equivocate on the severity of the illness or the urgency to find discover some kind of greater understanding of this disease (Vernon- "I think this is probably a signaling disorder" - language used by Fred Gill and many in the maladaptive stress response/CBT/GET camp and Kim McCleary's infamous "it's a life sentence not a death sentence" as just two examples). The CAA has also made a number of "strategic" errors and they have partnered with groups that they "later recognized" did not have the patients best interests at heart.

Watching Montoya's talk crystallized for me why I am so unwilling to settle for what the CAA is peddling. At this point in time, CAA supporters seem more like an abused partner who has been in a dysfunctional relationship for so long that they no longer recognize what a healthy relationship looks like. They are simply satisfied when they aren't on the receiving end of some form of abuse or neglect.

Dr. Montoya is showing us what a healthy relationship looks like. He is standing up to the medical community and calling them on their indefensible past, while also showing them what it looks like to respect their patients. This is a display of courage that has been entirely absent from the CAA.

I, for one, refuse to accept that I deserve no more than what the CAA and Kim McCleary have to offer. It is pathetic that Dr. Montoya's words stand is such stark contrast to what we have been told is all that we deserve, lower your expectations, use your "inside voice."

It is pathetic and quite telling that "Straight talk" is headline news.

CAA's repeated statements of contrition "Please baby, I know it was wrong, I'm so sorry, I'll never do it again, I'm turning over a new leaf" (with undertones from some quarters of "there isn't anyone else that will have you") are hollow and at this point they simply remind me of how often they have been used in the past to keep us from walking out the door.

I've asked where the money comes from that continues to support such a negligent partner. After listening to the reaction to Dr. Montoya's talk, it is clear that it comes from people who have accepted their role as second rate citizens, having lost site of their own worth and who have abdicated their own power in exchange for an "advocate" who is perpetually going to change their ways and show us the respect we deserve - next time.

 

[Otis]

I haven't posted in a while on this subject, in large part due to CBS's ability to convey my perceptive much better than I am able to elucidate right now.

 

[WillowJ]

would you mind specifying which was "the last paper [you] saw" of Lerner's so we can double-check?

 

[Hope123]

I also think some of Dr. Lerner's research is very poorly designed* to the point of being misleading at best yet he was praised a lot in Dr. Montoya's talk at the HHV-6 conference and referenced on the new Stanford CFS Web site. So I haven't donated to the Stanford research (aside from the thousands of dollars in lab fees I've paid). I will take another look when his paper gets published.

* Unless I've totally misinterpreted the data and charts in the last paper I saw, the table and graph starts with something like 106 patients and ends with something like 6 patients, and then compares these two on fatigue scores. This is totally uncomparable.

Agreed. I posted about this on this forum when the article came out. I respect Dr. Lerner's work and persistence but I think the results were overblown if you didn't fit his categories; e.g. I think if you have EBV IgM (which many with CFS don't), his treatments would work well for you but if you don't, it might not do as well. There was a lot of drop-outs in that trial and the best thing would have been to follow-up those people who dropped out and include them back when analyzing the data. You're going to get a biased estimate otherwise because only the people who improved will keep up with the visits. HOWEVER, I also realize this was not a formal funded trial/ study but more a retrospective observational study.

 

[WillowJ]

ok, thanks

 

[justinreilly]

The post you were replying to below was where I explained my view that volunteering and donating are equivalent, time = money. So I've generally not found many volunteer produced activities satisfactory to spend my money on when the volunteers were not doing an equivalent job before they volunteered. I haven't even heard about CBS' research fund.

In the first post in this thread, CBS suggests donating to OFFER UTAH which passes money on to good ME studies without taking a cut. CBS is still planning on putting up his own direct donation mechanism on the web sometime soon, i believe.

http://forums.aboutmecfs.org/showth...airman-s-Circle-donation&highlight=OFFER+UTAH

BTW, i am sorry you had a bad experience with Dr. Montoya, I think we all know horrible it is to be treated badly by doctors.

 

[justinreilly]

The video of Dr. Montoya's recent talk has received a large amount of praise. Cort described it as "Straight Talk." Especially memorable were his comments that he hope to see the day when the CFS patient community receives an apology from the medical community for their neglect and abuse. There are several other key words in his talk such as shame, that were directed at his colleagues, not the patients.

To make a long story short, this type of language should not sound foreign at all to a group of patients as sick as we are who have been so severely neglected by the government and medical community.

I'm not fan of the CAA or Kim KcCleary and while Suzanne Vernon states that she recognizes the importance of the fundamental concept of tight cohorts, I hear language from both McCleary and Vernon that often seems to equivocate on the severity of the illness or the urgency to find discover some kind of greater understanding of this disease (Vernon- "I think this is probably a signaling disorder" - language used by Fred Gill and many in the maladaptive stress response/CBT/GET camp and Kim McCleary's infamous "it's a life sentence not a death sentence" as just two examples). The CAA has also made a number of "strategic" errors and they have partnered with groups that they "later recognized" did not have the patients best interests at heart.

Watching Montoya's talk crystallized for me why I am so unwilling to settle for what the CAA is peddling. At this point in time, CAA supporters seem more like an abused partner who has been in a dysfunctional relationship for so long that they no longer recognize what a healthy relationship looks like. They are simply satisfied when they aren't on the receiving end of some form of abuse or neglect.

Dr. Montoya is showing us what a healthy relationship looks like. He is standing up to the medical community and calling them on their indefensible past, while also showing them what it looks like to respect their patients. This is a display of courage that has been entirely absent from the CAA.

I, for one, refuse to accept that I deserve no more than what the CAA and Kim McCleary have to offer. It is pathetic that Dr. Montoya's words stand is such stark contrast to what we have been told is all that we deserve, lower your expectations, use your "inside voice."

It is pathetic and quite telling that "Straight talk" is headline news.

CAA's repeated statements of contrition "Please baby, I know it was wrong, I'm so sorry, I'll never do it again, I'm turning over a new leaf" (with undertones from some quarters of "there isn't anyone else that will have you") are hollow and at this point they simply remind me of how often they have been used in the past to keep us from walking out the door.

I've asked where the money comes from that continues to support such a negligent partner. After listening to the reaction to Dr. Montoya's talk, it is clear that it comes from people who have accepted their role as second rate citizens, having lost site of their own worth and who have abdicated their own power in exchange for an "advocate" who is perpetually going to change their ways and show us the respect we deserve - next time.

I agree. If a research scientist can speak out for us with 'straight talk', there's NO excuse for CAA for failing to do this.

 

[mezombie]

Sign the Petition

From Kim's statement in the March CFIDSLink newsletter:

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.

In other words, the CAA will still be advocating, and the people they will talk to will still think this organization represents the patient population and its research priorities unless we tell them otherwise.

Sign the petition and let those "policy makers and public health officials" know that the CAA does not speak for you! And share the petition link with friends and family so they can sign as well.

https://www.change.org/petitions/pe...ion-of-america-as-our-advocacy-representative