Canceling my monthly CAA Chairman's Circle donation

CBS

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I wanted to share this letter. I'm quite saddened that it has come to this. However, I cannot ignore the public relations disaster that has unfolded over the last week. The multiple missed opportunities to educate the public and the misleading quotes repeated to several major news outlets was just too much.

Please continue to support the work of researchers like Drs. Bateman, Alan and Kathy Light by making directed donations via OFFER Utah.

I am writing to cancel my monthly contribution to the CFIDS Association of America via the Chairman's Circle. It saddens me that things have reached this point.

Cancellation of my monthly contribution to the CAA is a vote of no confidence on Kim McCleary. I appreciate that she has been with the CAA for many years, that she has relatives with CFIDS, and that she has worked hard for the organization. Unfortunately, I feel that nothing short of the survival of the CAA is at stake as more and more patients are alienated and support of the CAA by the patient community erodes. Ms. McCleary's ineffective and misleading public responses to the recent publication of the PACE trial results and the barrage of dismissive articles in which she was quoted has been devastating. The CAA was completely unprepared to respond to a study that was no secret with controversial definitions of the disease, controversial treatments and which exaggerated the minimal amount of improvement in a minority of patients that were comprised of those who did not chose to abandon the PACE study, those who did not decline to enroll, and those who were not excluded from participating as they were too ill.

Under Ms. McCleary's direction, the CAA has repeatedly missed opportunities to educate the public, failed to highlight the dismal state of what is being passed off as science and a celebration of "significant improvement" in CFS, and side-stepped making a long over due and much needed public declaration on the important distinctions between chronic fatigue syndrome as defined by the CDC and the Canadian Consensus Diagnostic Criteria. Ms. McCleary's latest comments to the media regarding the PACE trial seemed to do nothing more than express regret that the "interventions" implemented in the PACE trial were too complicated to be made widely available in the US.

Having suffered from a severe viral onset and now experiencing, amongst numerous other symptoms, multiple documented forms of CNS pathology, I can only conclude that the chronic fatigue Kim McCLeary is referring to ("a life sentence, not a death sentence") is something quite distinct from the severe health problems that I now face.

My decision to discontinue support of the CAA was a difficult one. I am a strong supporter of the work being done by several of the CAA research grant recipients (and I found the 2010 webinars to be quite valuable). I will be redirecting my donations to the researchers themselves. I do appreciate that if a large number of CAA supporters were to follow my lead, significant and perhaps irreparable harm would be done to the CAA's research efforts. However, I can no longer ignore the fact that a greater degree of irreparable harm is being done by the repeated failure of the CAA to represent the patient community, an unsustainable situation which cries out for new leadership.

I look forward to the day when I can throw my unqualified support behind all of the efforts of the CAA.

Sincerely and most regrettably,

Shane _______
 

justinreilly

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This must have been hard to do. I do admire your ability to see the best in people, but not become stuck in your position. You made the right decision, imo.

You have really been a loyal supporter of those who help us. I agree Kim McCleary has worked hard for us and has strengths in her job (I personally feel from my outside view that she would do a good job as a chief operations officer or the like for an organization, but has demonstrated she is not effective as CEO of CAA). I hope this is the impetus CAA needs to make needed changes so that we can all get behind them again and work together.

I would like to make a donation to research at OFFER. How do you make a directed donation? Does this option come up once you click the donate button?

Thanks CBS, for all you do for us!
 

leaves

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Yes CBS, sadly that is the right thing to do. We need a change of direction and leadership in the CAA and an end to their paternalism.
 

OverTheHills

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What Shane said.

The PACE study has been going on for years, many critiques and flaws have been documented and circulated widely by advocates such as Prof Hooper, and by sufferers on forums (including PR). Other small patient organisations (MEA, east Anglia CFS group) issued strong professional rebuttals, unlike the CAA. What happens in the UK affects everyone; the CAA have added to the harm of PACE.

OTH
 

CBS

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I would like to make a donation to research at OFFER. How do you make a directed donation? Does this option come up once you click the donate button?

Thanks CBS, for all you do for us!
Justin,

The option of making a directed donation via OFFER Utah does not come up when you go to the OFFER link. When you make a pay pal donation you can add your request that the donation be directed in the "Special Instructions" field. The other option is to contact OFFER by phone (801-328-8080) and request that the donation go to the researchers. I've spoken with the chair of the board and Dr. Bateman and have been told that the OFFER will make sure that directed donations are distributed accordingly.
 

dannybex

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Great Letter...

In the past I've often felt that people have been too quick to bash the CAA -- for not using 'this' word, or for using 'that' phrase, etc., but my god, I had no idea McCleary had reacted the way you say she did and did not speak out forcefully against that harmful PACE study and the misleading headlines that accompanied it.

I don't have the money to donate to any organization, but in view of what happened last week, my opinion of the CAA has gone waaaaay down, and I agree that Ms McCleary should resign or be fired immediately. I can't imagine what excuse(s) they could possibly come up with or how they could justify her comments after this...

Thanks for writing such a great letter Shane.

p.s. perhaps you could ask for a refund as well?
 

WillowTree

ME/CFS is NOT fatigue!
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I too wrote to Kim McCleary and the CAA Board of Directors to let them know that I am stopping my long time support of the CAA. I did this with great regret as I strongly supported the seed money given to promising researchers and the establishment of an ME/CFS Bio-Bank. This is truly distressing to me and I am greatly disappointed in an organization in which I had put my faith and trust that they would help us. The disastrous response to the PACE study was just too much. It has done us great harm. I urged the CAA to return to their original mandate -- to advocate and work for the betterment of people with ME/CFS, the serious Neuro-Endocrine-Immune disease as described in the Canadian Consensus Document. We need serious BIO-MEDICAL RESEARCH. Putting research money into studying coping mechanisms that don't give us a better understanding of this disease or cure or rehabilitate anything is a complete waste of money imo. That is the message that should have been given to the media. I will now be sending additional money to the WPI.
 

justinreilly

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In the past I've often felt that people have been too quick to bash the CAA -- for not using 'this' word, or for using 'that' phrase, etc., but my god, I had no idea McCleary had reacted the way you say she did and did not speak out forcefully against that harmful PACE study and the misleading headlines that accompanied it.

I don't have the money to donate to any organization, but in view of what happened last week, my opinion of the CAA has gone waaaaay down, and I agree that Ms McCleary should resign or be fired immediately. I can't imagine what excuse(s) they could possibly come up with or how they could justify her comments after this...

Thanks for writing such a great letter Shane.

p.s. perhaps you could ask for a refund as well?
fwiw- links to McCleary's and CAA's comments and my take:
http://forums.aboutmecfs.org/entry.php?809-CAA-GET-and-CBT-effective
 

Esther12

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None of the big organisations responded well. Action for Me were pretty critical of the work, but in a way that made them look silly. It was hard for them all though, as it seems that they didn't have access to the paper in advance, and would have looked bad if they were just stubbornly insisting the research was wrong without having a good reason for doing so. I think it would have been best if no comments had been provided until they had time to look in more detail at the paper.
 

Esther12

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Personally, I think it's a mistake to focus upon selection criteria. (I hold the unpopular position that ME is not easily distinguished from CFS, and that all the various diagnostic criteria about have their problems).

The lack of actometer readings, combined with past studies showing CBT is effective at altering questionnaire answers without increasing activity levels... that was known about in advance. But to try to make that point in response to the study, and without having time to read it would have been hard and could have sounded like quibbling.

It was a tricky situation, and I don't know how well I could have handled it.

edit: Also... the most serious problems with the paper were not known in advance. If the Pace trial had managed to get 1/3 CFS patients to achieve the level of 'recovery' required in their protocol, I'd be giving them another go! They played a bait and switch which it would have been really difficult for CFS organisations to respond to instantly.

I think there are problems with a lot of the big CFS organisations, and I've become more aware of the problems with the big American ones over the last year, but on this point, I think they were in a tricky position.
 

Cort

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I understand CBS's decision and it is something the CAA should really think about it because he is very knowledgeable and he is very supportive of their research program. When you lose someone like CBS - that's something to think about.

I too contribute monthly to the CAA - a significant amount with my budget (I did it in a moment of wild enthusiasm and have stuck with it :)). I was disappointed by their response as well. I felt they hit many of the right notes but in the wrong way and missed others. It was not what I hoped for.

I will continue to contribute though. The CAA is doing too much important research and their vision of their research network and BioBank is too compelling for me not to continue contributing to them. I also do appreciate their 'inside voice'. If their ability to get CFS registered in the Congressional Medical Defense Fund lead to just one big ROI study getting approved - that would be worth it. If they can get prominent researchers to agree to serve on the CFSAC panel -which gets them engaged in CFS - that, too, could reap huge dividends in the future.

Unfortunately their 'outside voice' is not very compelling - a particularly problematic situation when it leads people like CBS and WillowTree to stop contributing regularly - and thus impairs their ability to fund other programs (which I think are so valuable). In my piece on the CAA I said that I felt the CAA's ability to carry out the huge projects they've taken on (like transforming the CFS research field) will require that they hit the right notes with the patient community. Obviously they didn't this time and they lost more support.

I don't know how much that effects their bottom line. They may have a good stream of revenue from major donors - I imagine they do since except for Jennifer they kind of ignore the Forums - but it certainly can't help.
 

WillowTree

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This is a sad and difficult situation, Cort. In my letter to the CAA Board, I wrote that I would only reconsider if there is a change in direction in their leadership tactics and I see more assertive and aggressive actions on their part which truly represent what the ME/CFS community wants and expects from its advocacy organization. The ball is in their court.
 

Hope123

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Shane,

I, also a modest monthly donor, had the same thoughts as you and expressed them privately over the weekend to the CAA. The CAA's media response was pitiful and even damaging. The UK orgs at least put in some effort and even Charles Shepherd over at UK's MEA wrote a comment in the NYT.

I was told that the CAA now considers itself an organization focused on research and not on media response, patient advocacy, etc. Which is fine in the sense that there are several organizations who focus only on research like the WPI, HHV-6 Foundation, Stanford's new institute, etc. I also contribute to these groups. HOWEVER, none of these organizations have ever presented themselves as an advocacy organization and few people have expected them to address advocacy (although the WPI has occasionally stepped into this ring, whether people agree with it or not). What was conveyed to me by the CAA was that they had not communicated their new strategy well to the ME/CFS community yet.

So I told them I would help them do this and am doing it now. Like a good investor, I need to diversify my portfolio and in the past, the CAA was part of my advocacy section. Now that they are no longer doing this, I have to take my advocacy dollars and invest them elsewhere. The only national org. I see doing this now is PANDORA so that is where my money will go. I need someone to fight for me so I don't get discriminated by doctors, lose my health insurance, lose my income, and get ridiculed by the media while I await a medical solution, which may or may not arrive soon.

I will continue giving some money to the CAA because I support their research but I really hope they convey their mission soon to contributors as to do otherwise is to mislead them.
 

WillowTree

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My question then, is why does Kim McCleary continue to respond to reporters who ask for her input? The CAA frequently appears in media articles as the spokesperson for the leading ME/CFS advocacy organization representing this patient population. I have seen this and her comments in news articles over and over again. It seems like she almost exclusively is the one the media goes to. Not only has the CAA not communicated their change of focus to us -- this is the first I'm hearing it -- neither have they communicated that to the media. One of the criticisms I gave to Kim in my letter to her about this PACE fiasco was that she did NOT have to respond to questions about the PACE study, especially if she had not as yet seen the study or had a chance to analyze it. Unfortunately, this did not happen.

I just checked CAA's website. On the left is a tab to click on for "Advocacy Alerts." I took part in these MANY times. In the bar across the top is a tab for "Patient Advocacy." Under their Core Values is the following:

"Our Core Values:
To lead with integrity, innovation and purpose.

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

This is certainly confusing and contradictory to me. I, too, looking for a new advocacy organization, joined Pandora today.
 

Mark

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Sympathies indeed Shane, this indeed must have been tough for you.

This was a watershed for me too re: the CAA, though I had no donation to withdraw. It really was a final straw for so many of us: a defining moment.

Even if they don't want to be an advocacy organisation, they were the ones who did get their spokesperson quoted in the press: that's who the press went to for comment. So they absolutely have to at least have somebody there who can get something half-decent in the press on such a crucial, crucial issue.

Let alone the public relations with the general population, when you see an epic fail like this then, as a patient, you begin to wonder how enlightened even their research agenda might be - if they are that out of touch with what really matters on the ground, right now.

We all know it's a really difficult situation, and the enemy is a master of media manipulation, but...that's what we pay 'em to overcome.

I'd love to know - from them - Do they just think advocacy is completely irrelevant, have they decided literally to allocate 0% time and resources to it as a matter of priority, do they just believe something completely different to the rest of us, or...what?

If there's a way for them to rescue something without dismissing Kim McCleary, it would perhaps be to somehow appoint somebody dedicated just to the advocacy angle, a purely PR and press person...I can imagine it working with McCleary doing what she does and leaving the press figurehead role to somebody else who is trusted by patients; they could even just refer the press to somebody independent of the CAA who could take on an attached role as press spokesperson. There are ways...

But I think the reaction has been so bad, that surely they will have to respond to the patients' reaction somehow.