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Caa poll

How do you feel about The CAA?

  • Caa is doing great!

    Votes: 8 4.0%
  • There are some problems, but no drastic changes are needed

    Votes: 11 5.4%
  • Caa needs to change direction

    Votes: 6 3.0%
  • Caa needs to change direction and leadership

    Votes: 175 86.6%
  • No opinion

    Votes: 2 1.0%

  • Total voters
    202

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Someone emailed me to ask where CAA said "XMRV is not related to ME, case closed" as I put it. They didn't literally say that in 'the iteration of X' (whatever that's supposed to mean). It was just my summarizing of the tone I felt they were strongly trying to put across.

It seems to me they are deliberately not saying those words, so they can't be accused of saying that, while saying lots of "wrapping it all up and moving on" type talk to give the feeling that it's all done and we need to move on now. like someone got fired (WPI and XMRV) and the boss is saying "well they failed, but we learned a lot from their mistakes and we wish them well in their leaving to pursue other opportunities."

That may seem like reading too much into it to some, but I really feel that way, so I'm saying it.
 

Andrew

Senior Member
Messages
2,523
Location
Los Angeles, USA
I don't like CAA, but I don't think it helps our cause to put things up in quotes that they didn't say, based on an idea that maybe they think it.

OTOH, I'd like to take this opportunity to appeal to the board to remove K. Kimberly McCleary as the Association's president & chief executive officer. I think enough reasons have been stated in threads here. And I realize some accusations have not been supported, but there are others that have. So I think it's time you started a search for a replacement. I'm not asking for a radical who never questions new research, but I would like someone who is committed to doing right by patients.

Think about it. What is a board supposed to do? Just simply be yes-men for the boss, or to do what's best for the people the organization is supposed to represent. Why not show patients you are willing to do your jobs by searching for new candidates. And it's not that I don't realize you have limited energy. But I think you can see that as the years go by, your membership dwindles and more and more patients speak out against you.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I don't like CAA, but I don't think it helps our cause to put things up in quotes that they didn't say, based on an idea that maybe they think it.

I agree. I thought my use of the word 'attitude' indicated that it was not a quote. This is what I said:
'CAA's attitude of "XMRV is not related to ME, case closed" is absolutely unacceptable.'

I have added the following to clarify:
'(this is not a quote, but my perception of their attitude in the last CAA email article "Iterations of X").'
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I'm hoping that the fact they didn't get any money in the second round, despite WPI endorsing them, sends a strong message to CAA that the current management must go! But I'm not counting on it.

Someone forwarded me an email from CAA board member Amy Devine asking people to vote for CAA. No mention of WPI. I am disappointed as usual by CAA's failure to get fully behind WPI.
 

Tuha

Senior Member
Messages
638
I think all this situation with CAA is really bad for both sides. We, the patients are losing so much because of this conflict. CAA wasnt successful with advocacy but will we give them chance to show us if they are competent in research area?
I dont know if there was already some kind of talks with CAA but if not I would propose to make a public meeting between CAA and patients community to talk to them where is a problem and what we expect from them. Their budget is more than 1 mil. USD, CAA has a lot of supporters. Except WPI which organisation has more money? So I think its in interest of both sides to find a good solution. A lot of people say that we just lost 40 000 USD in Chase community giving because of this fight but I think we are losing much more......
 

Andrew

Senior Member
Messages
2,523
Location
Los Angeles, USA
I think the CAA got out of the patient advocacy business because of all the criticism they received. And maybe they figured that focusing on research would fix things. But McCleary has caused so many problems, I think anything short of replacing her will not allow differences to heal. I think it might also be necessary to replace Vernon, because she seems to be part of the McCleary approach to things.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Leaving aside other problems, they don't need all the ridiculous overhead McCleary, Vernon and the CFO drain out with their huge salaries to manage a tiny research granting fund. This could even be done with volunteers and say $100K in overhead (inc salaries).
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
There has recently been a proliferation of five-star reviews of CAA on guidestar.com. These reviews say patients should stop saying bad things about CAA because we are only hurting ourselves; how great Kim McCleary and Vernon are and that they are our only hope and their advocacy is so great!

Everyone, PLEASE put up a review saying what you feel about CAA. Let them know what PR patients think of CAA. A couple of sentences is all it takes to have an impact. Click on the 'write review' tab on the left side of the page:

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

Thank you!
 

jace

Off the fence
Messages
856
Location
England
Well, that was fun, Justin. I had already written a CAA review on Guidestar, and thought I could not write another, but I was mistaken.

I am fairly sure that the CAA inner circle have been blowing their own trumpet with those five star reviews.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
So CAA is still billing itself as 'patient advocates' and 'a patient group.' They also really should change their name since they do not have members, only donors, the vast majority of patients polled oppose them and the fact that they have declared they are out of the advocacy business.

Today's Science magazine article:
"Even disease advocates who welcome the attention XMRV has brought to CFS believe the time has come to put this line of research to rest. It's hard to say that this has not received a fair appraisal, says Kimberly McCleary, president of the CFIDS Association of America, a patient group in Charlotte, North Carolina.


Today's Washington Post article:
"Advocates for patients with the syndrome were disappointed.

We share the deep disappointment of many CFS patients and scientists that the initial data did not hold up. Whether you have been diagnosed recently or have been ill for decades, this news comes as a blow to hope for rapid advances in the care available to CFS patients, said Kim McCleary of the CFIDS Association of American in a statement."


Today's NPR article:
"And Kim McCleary, head of the CFIDS Association, an advocacy group for people with chronic fatigue syndrome, says it's time to look for something else."


Today's WebMD article:
"Patient advocates say it's time to refocus research efforts on credible science.

We share the deep disappointment of many CFS patients and scientists that the initial data did not hold up. Whether you have been diagnosed recently or have been ill for decades, this news comes as a blow to hope for rapid advances in the care available to CFS patients, says Kim McCleary, president & CEO of the CFIDS Association of America, in a prepared statement."
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
We've continued to see comments in newspaper articles from Kim McCleary, taken from the CAA website and also from emails from Kim to media outlets.

Here's an interview of Dr. Vernon in the Saturday Evening Post, 10/24/11:
http://www.saturdayeveningpost.com/2011/10/24/wellness/medical-mailbox/cfs.html

I'm surprised to say that most of this article isn't bad. However, the Headline and last things people read are usually what people take away and this is what they will take away:

"Conquering Fatigue" and "Many people with CFS don't have a psychiatric disorder."

Also the false impression that the 'scientific community' is all over the "CFS" problem.

Plus, what about the fact that CAA is now "laser-focused" only on research and not being in the media. I guess that's not true. In fact Vernon is now saying they are 'laser-focused' on making "CFS" "widely understood", among other things. I guess doing interviews with the media is part of making "CFS" 'widely understood." : (
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Just listened to excellent patient testimony at CFSAC, including that by Jennifer Spotila, CAA board member. Thank you, Jennifer! I agree 100% with everything you said... except, you validly lambast CFSAC for not ensuring HHS comply with its recommendations; you specified the recommendation that all govt agencies use the term "ME/CFS." How can you be mad at that if you and CAA only call the disease "CFS"? Why has CAA said that it will only start using anything but "CFS" after CDC does (even though NIH already uses "ME/CFS")?

Why doesn't CAA make basic free and low-cost changes that will help us and have been requested over a year ago by a number of patients such as all of the following (except re Rituxan), How about calling the disease ME? How about requiring patients in the biobank to have ICC and CCC ME? What about making it clear that while XMRV proper is dead, HGRVs may have just been born (pending further published evidence)? Why doesn't CAA work to make changes on the content of it's website info that many patients recommended here a year and more ago? Why doesn't Vernon go on national tv and call for the crime against pwME known as the Reeves Criteria to be rescinded? Perhaps the answer is that she's an author of it.

The following isn't low cost, but crucial: why not provide or raise emergency funding for a Rituximab trial? Why are the salaries of the execs still stratospheric while their performance is not?

CAA has made marginal improvement, but we need you to speed up these important and/or low-cost measures!
 

HowToEscape?

Senior Member
Messages
626
I don't know. I think the people that make up the CAA at this point in time are playing to their strengths. Kim is good with working with Washington and getting the issues in front of politicians. Susan is good at organizing research although I think she may be a little wobbly on the correct definitions! So they are doing and going in the direction of the people who are in charge. No problem.

The problem is that the patient population want's an advocacy group that can

1- define the illness for researchers, doctors and patients.
2- educate the public, medical and politicians in an aggressive manor.
3- create and release strong press releases that counter mis-information quickly and with the same amount of coverage as the opposition.
4- lobby for changes in public and government recognition of the illness.
5- speak out loudly against patient abuses by medical personnel, government policies and public perceptions.

So if we accept that the CAA does not do any of these things, is not going to do any of these things and that these thing need to be done then the only logical solution is to build an organization dedicated to doing those things for us. Fund this organization and it's very specific mandate to do these things. Cause it don't work without money. (sad dog sighs)

P.s. sorry leaves I didn't vote cause you didn't have a category for ;

'The CAA is not doing what we need so we just leave them to do what they are going to do and go somewhere else for what we need.' (big grins)

"Kim is good with working with Washington and getting the issues in front of politicians"

That depends on what they present as our issues. People in a position to know inform me that the CAA has acted against our interests.

I've met Kim. She struck me as a midlevel HR employee that struck gold getting a better gig. She didn't demonstrate any personal understanding of or connection to the disease, but did throw a bunch of BS about how the CAA had an 'innovative research model bridging the financial dead zone' etc etc. This is not someone I would allow, much less pay, to represent me to Congress.
There are plenty of people who are worth $150K + perks. McCleary is not one of them.

--- whoops, I just saw that the last entry is from 2011. Don't know how I stumbled across this thread.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I wrote to CAA’s board regarding their support of the IOM contract and failure to support the Canadian Consensus Criteria:

Please forward to CAA Board of Directors
Please cc to CAA Officers and Public Relations/Outreach Director

Members of the Board:
Let me first express my appreciation for the apparent strides CAA has made in the last year or so. In my eyes, these include steps like removing the CDC toolkit and other misinformation from your website, your increased focus on an apparently (to my mind, which has quite limited scientific literacy) well-thought out research plan, the use of “ME” in ME/CFS, increased communication with patients, the inclusion of PEM/PER/PENE as a requirement for contributions to your biological sample bank, the installation of a new CEO, and perhaps other initiatives of which I am unaware.

In my strong and well-considered view, there is still great improvement to be made. I am writing you now because of your expressed support of the contract between HHS and IOM for a new clinical case definition for ME. A few months ago, many organizations and patients signed a petition to HHS to change the name of the disease back to ME and to immediately adopt the CCC. More recently, a great number of patients have contacted HHS and Congress to demand that the CCC be immediately adopted and that the IOM contract not be signed (and now cancelled). As you know 35 (now 34) of the very top ME researchers and clinicians in the world wrote to HHS demanding the same thing- no IOM contract and immediate adoption of CCC.
You are well familiar with the reasons for these demands (If you wish to be reminded, I simply refer you to the letter by the 35, now 34 experts). You stand virtually alone among stakeholders in your approval of the IOM contract. I now strongly request that you change your stance for the good of the whole community.

A year or two ago, in response to a deluge of criticism by patient activists/experts, CAA announces that it was now focused as a “laser” on research and was no longer a patient advocacy organization. I strongly object to your coming out now into the public arena as a supposed patient advocate, by doing such things as stating your support for the IOM contract, contacting the 35 signatories to subtly influence them to change their views, and it seems, responding to members of congress and the press as a patient organization.

The announcement by HHS of the IOM contract did very little to address the concerns of patients, clinicians and researchers, despite your claims and those of HHS to the contrary. The contract is at fundamental odds with the request for a stakeholder definition meeting by CFSAC and will be loaded with non-experts who will almost certainly screw things up royally (especially apparent in light of IOM’s recent Gulf War Illness report). Please reconsider your position, I beg you, for the good of everyone.
I very much welcome contact from any or all of the board for friendly discussion. In any event, I look forward to a timely response. Thank you for your consideration.

Sincerely,
/s/
Justin Reilly, esq.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Thoughts About ME blog by Jeanette Burmeister alleges the following. I have asked CAA for confirmation and explanation immediately.

http://thoughtsaboutme.com/2013/09/...g-signatories-to-withdraw-endorsement-of-ccc/

CFIDS Association Asking Signatories to Withdraw Endorsement of CCC

Posted on September 28, 2013 by Jeannette--Amped up. Ready to go. (TM)

I know this for a fact, but can’t disclose my source:

The CFIDS Association of America (“CAA”) has contacted at least some, maybe all, of the 35 signatories of the letter addressed to the HHS regarding the adoption of the CCC asking them to withdraw their endorsement of the Canadian Consensus Criteria (“CCC”). Also, Suzanne Vernon/the CAA is a beneficiary of the IOM contract. The CAA sent their requests yesterday and asked the signatories to comply by noon today.

This is puzzling not only because it is directly and brazenly adverse to the patients’ interest, but also because the CAA claims to be purely a research organization now and not an advocacy group anymore. Yeah, right. And the deadline: I mean, really?!

Ms. Vernon’s involvement with the IOM contract is a blatant conflict of interest in asking the signatories to reverse course.

I have to say: It would be hard for me to be more disgusted at this point.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
A great blogpost from Jeanette Burmeister

http://thoughtsaboutme.com/2013/10/03/spinning-around/
Posted October 3, 2013

“A “spin room” …. is an area in which reporters can speak with debate participants and/or their representatives after a debate. The name refers to the fact that the participants will attempt to “spin” or influence the perception of the debate among the assembled reporters.”—Wikipedia

Today, the CFIDS Association of America (CAA) released a statement about its position on the HHS IOM contract. I know people will tell me (again) to stop being surprised. But I do like to give folks the benefit of the doubt and I do tend to be taken aback when something does not add up. And things certainly do not add up here.

First of all, as an organization that announced 2.5 years ago to be “transforming from a patient support and advocacy organization to one laser-focused on stimulating and supporting research,” it sure is knee-deep (emails, phone calls, blog post, Facebook posts) in this advocacy issue, as it has been with others since its big transformation announcement.

But what mainly piques my interest is the fact that the CAA quite obviously is assuming that the IOM contract will go forward despite the fact that the open expert letter is still in place. It is true that Dr. Bateman has, in her statement of yesterday, changed her support for the adoption of the CCC and her opposition to the IOM contract. But apparently, none of the other 34 signatories of the expert letter have followed suit. The letter is still in place and all the other experts are presumably still very much standing by it. One person changed her mind. One! It seems to be an overreaction of the CAA to go from that to “ok, we are done here.” A reaction that is not at all in the patients’ best interest!

Moreover, we have not heard from Secretary Sebelius yet in response to the open expert letter. Why assume that she will not be convinced by the overwhelmingly persuasive argument that it’s unreasonable to spend—in the case of a grossly underfunded disease—around $1 million on an IOM contract (that’s usually a ballpark estimate for IOM contracts) for the creation of a definition by non-experts for which there is no need since we have the expert-endorsed CCC readily available? The CAA is jumping the gun here and one can’t help but wonder if this is an attempt to demoralize patients and advocates and cause them to drop their support of their experts. If the CAA just repeats often enough that the IOM contract is a done deal, it will become a self-fulfilling prophecy because opposition will dwindle.

My plea to patients and advocates out there: Don’t fall for it! The open expert letter is the strongest tool we’ve had in years, maybe ever. Finally, our experts have come together and a majority agrees that the CCC should be adopted (and updated from time to time based on the latest findings) and that the IOM contract should be abandoned. Our experts need our support and gratitude now more than ever. Starting to think about which patient representative should be on the IOM committee is dangerous and exactly what the CAA wants us to do. It’s counter-productive. Instead, it is in our best interest that there be no IOM committee for the creation of a disease definition. Our energy needs to go into making sure of that.

I questioned the CCA’s position on its Facebook page hours ago, but the CAA has not replied. In fact, my comment seems to be no longer on the page. Granted, with the slew of Facebook issues, this could be merely a technical or temporary problem. I don’t know.

The CAA expressed understanding today of patients’ and advocates’ opposition to the IOM contract. However, it does not address the most obvious reason for this opposition, the terribly botched work of the Gulf War Illness (GWI) IOM committee on treatment, which turned a perfectly fine name, Gulf War Illness, into a completely offensive, non-descript, meaningless and, thus, harmful name, chronic multi-symptom illness (CMI), for which it recommended graded-exercise therapy, cognitive-behavioral therapy and antidepressants and which mentioned the same “treatments” for “ME/CFS.” Both Suzanne Vernon, Scientific Director of the CAA, and Fred Friedberg, President of the IACFS/ME, are on the IOM committee for the disease definition of what’s tragically now called CMI. Neither Vernon nor Friedberg are experts on the disease. Both are on the NIH Special Emphasis Panel (SEP) that reviews grant applications for “ME/CFS,” an extremely powerful position to hold. Fred Friedberg is a psychologist who has been receiving signifiant amounts of money from various NIH institutes for the study of coping techniques for “ME/CFS”:*

Fiscal year 2008: $230,603 from NINR, ”Fatigue Self Management in Primary Care, Efficacy, Credibility and Economics,” project #: 1R01NR010229-01A1, State University of New York Stony Brook

Fiscal year 2009: $230,603 from NINR, “Fatigue Self Management in Primary Care, Efficacy, Credibility and Economics,” project #: 5R01NR010229-02, State University of New York Stony Brook

Fiscal year 2010: $228,297 from NINR, “Fatigue Self Management in Primary Care, Efficacy, Credibility and Economics,” project #: 5R01NR010229-03, State University of New York Stony Brook

Fiscal year 2011: $259,641 from NINR, “Efficacy of Home-Based Self-Management for Chronic Fatigue,” project #: 2R42NR010496-02, Warren Stress Management”

Fiscal year 2011: $66,864 from NICHD, “Efficacy of Home-Based Self-Management of Chronic Fatigue, ” project#: 2R42NR010496-02, Warren Stress Management

Fiscal years 2012/2013: I am unaware of the amount of funds Dr. Friedberg may have received for fiscal years 2012 and 2013.

I find it astounding that our government who basically has no money to award to our researchers for bio-medical research has spent these incredible amounts on the study of coping mechanisms, an area that is pretty much “researched out” when what we desperately need is bio-medical research. Can you imagine what Dr. Peterson, e.g., would have been able to do with these kinds of grants researching pathogens, NK cells or cytokines?!

Suzanne Vernon is reportedly about to be appointed to the IOM committee for the “ME/CFS” disease definition, which, if true, creates a conflict of interest for the CAA to have an official position on the issue of the IOM contract at all. Yet, this is also not addressed by today’s CAA statement. If it’s not true, why not say so? I’d love to be wrong on this. If it’s true, why not comment on why, in the CAA’s opinion, this does not create such a conflict? But most importantly, why the quest for so much power over the fate of ME patients in the hands of just two individuals, Suzanne Vernon and Fred Friedberg? With such concentration of power without any checks and balances, why would patients possibly be concerned? Without addressing any substantive concerns, the CAA’s statement is meaningless. It’s spin.

The CAA also, after a lot of pressure from the patient community, made available the letter it sent to the experts. According to the CAA letter, Suzanne Vernon spoke to Dr. Bateman and Dr. Bateman explained her reasoning for changing her position and suggested that Suzanne Vernon contact the other signatories. Curiously (as noted by another alert patient), the copy of the posted letter was addressed to “Cindy.” No other Cindy or Lucinda or Cynthia signed the letter. It seems implausible that Dr. Bateman would have been sent this letter given that it referred to her own position. Just saying.
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
Since the CAA has in fact changed both leadership and direction since this poll was put up I'm wondering if that should now go as a note with this poll?
or if this thread should be un-pinned from the top of the advocacy board?


seems a bit out of date / incongruous now. or at least not the most pressing issue to be pinned to the top of advocacy section

anyone know how to flag the issue for a moderator ?
edit: just answered my own question re: moderator
@Sushi
 
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