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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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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

leaves

Senior Member
Messages
1,193
If indeed 95% of the patients feel that the current leadership should resign and caa should change course, we have to file a petition. There does not seem to be any base for the current leadership. Don't cling to power, 95% of the patients cant be wrong/confused/Ill informed.
 

mojoey

Senior Member
Messages
1,213
I've long believed

this was the only legitimate way we could show the CAA what we really mean, and that it's not only the most marginal voices that feel that change is needed.

Obviously we need a decent sample size for accuracy, so we really need to get this poll out there.

Management at CAA truly believes that they are doing the right thing and that the voices of opposition we keep hearing from a select few do not represent the masses. Quantifying our collective opinion, versus just stating it individually, is the only ammunition we have to show them otherwise.
 

Otis

Señor Mumbler
Messages
1,117
Location
USA
this was the only legitimate way we could show the CAA what we really mean, and that it's not only the most marginal voices that feel that change is needed.

Obviously we need a decent sample size for accuracy, so we really need to get this poll out there.

Management at CAA truly believes that they are doing the right thing and that the voices of opposition we keep hearing from a select few do not represent the masses. Quantifying our collective opinion, versus just stating it individually, is the only ammunition we have to show them otherwise.

Well said mojoey. They are still going to have to have wisdom and courage to make a change.
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
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)
 

silicon

Senior Member
Messages
148
10 Years Later

10 years ago Marc Iverson resigned from the CAA, the organization he founded, due to major disagreements with Kim McCleary, as explained in his resignation letter below.

How much has changed since then?

http://www.co-cure.org/Iverson.htm
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
this was the only legitimate way we could show the CAA what we really mean, and that it's not only the most marginal voices that feel that change is needed.

Obviously we need a decent sample size for accuracy, so we really need to get this poll out there.

Management at CAA truly believes that they are doing the right thing and that the voices of opposition we keep hearing from a select few do not represent the masses. Quantifying our collective opinion, versus just stating it individually, is the only ammunition we have to show them otherwise.

Well said Joey. I added my vote. I can think of 180,000 reasons why the CAA needs both a change of leadership and a change of direction.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
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)

I agree we need a patient org that can do all these things. My first choice by very far is that CAA and PANDORA would do these things!! I doesn't help anyone- not the orgs, not the patients, researchers, doctors, future patients, America, the world- if they don't do this stuff and CAA just falls apart. CAA and PANDORA could be great forces for us. They are already set up and have some funding.

So we need to start new a new org or orgs that can do this and tell everyone not to support CAA until they change. But we also need CAA to change.

Also, I really strongly think that Kim McCleary does not have a good 'inside voice' and is not "good with working with Washington and getting the issues in front of politicians." I don't understand how anyone could think that.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
10 years ago Marc Iverson resigned from the CAA, the organization he founded, due to major disagreements with Kim McCleary, as explained in his resignation letter below.

How much has changed since then?

http://www.co-cure.org/Iverson.htm

Right; nothing has changed! People have been calling for her to go for years and years and nothing has changed. This latest 'incident' is nothing new, in fact it would have surprised me if she had said something appropriate and helpful instead of something destructive. The only unusual thing here were the stakes were higher than usual so the harm that she does was magnified more than usual. She will continue to do this just as she has done for years and years.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Cort and Jennie looked so lonely, I almost voted with them:

There are some problems, but no drastic changes are needed: n:2 2.13%

Just to confirm, you need to be a member to vote right? I hope so. I want this poll to be an accurate reflection of what people here think with no "gaming". Although i will acknowledge that if this poll were done at some random point earlier, I would think CAA would have more support.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Just got the CFIDSlink email. McCleary says the exact same thing again about GET and CBT being modestly beneficial. I don't remember requesting another slap in the face.

emphasis added

Too Big to Fail
Commentary on the PACE Trial

By K. Kimberly McCleary

A paper published Feb. 18, 2011 in the Lancet, "Comparison of adaptive pacing therapy, cognitive behavior therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial" compares four treatment approaches in a population of 641 patients in the United Kingdom (U.K.). The study reported modest benefits following a six-month course of cognitive behavioral therapy (CBT) or graded exercise therapy (GET) compared to specialized medical care alone or adaptive pacing therapy, based on improvement in self-reported symptom scores. There were no biological measures taken during the study to correlate with the results. Read our detailed analysis of the study, "Falling Off the PACE."

News stories have touted more conclusive results than the data support. The authors conclude in the paper, "Our finding that studied treatments were only moderately effective also suggests research into more effective treatments is needed." However, the public will likely only read headlines like this one, "Talking and exercise could cure M.E. - study." Such tidy conclusions are dangerous. They contribute to dismissive attitudes about CFS and undermine understanding of its severe and life-altering impact. They vastly oversimplify the individual patient's ability to recover his or her health. As a result of reading quips like this, patients may attempt more aggressive regimens than their bodies can withstand and professionals may recommend and/or deliver services that are not tailored to the restrictions imposed by CFS, especially post-exertional relapse. It is understandable that this study, the publication and the resulting media coverage have provoked deep concerns and strong negative reactions from the patient community worldwide and many professionals.

Structured programs that seek to expand function and reduce symptoms may provide modest benefits when added to standard medical care, but they do not offer complete resolution of symptoms or cure, and the benefits are equivalent to those seen in other studies of chronic illness. Younger, less severely ill and more recently ill individuals may benefit more, according to the effects seen in this select study population and other trials of CBT and GET. But there are risks to these therapies, especially when employed outside the standardized setting of research studies.

The PACE Trial was guided by hundreds of pages of manuals with heavy scripting for provider-patient interactions and close supervision of all services. Validating the past and present experiences of participants was a core feature of the training provided to those who conducted the services. To compare the outcomes of this trial to what one might find in the real marketplace is a little bit like comparing a visit to Disney's EPCOT Center to a bona fide trip around the world. Even if the services in the trial weren't delivered perfectly, participants were somewhat buffeted against the types of negative encounters in health care settings that are routinely experienced by CFS patients due to persisting myths and misinformation about CFS. That fact alone may have contributed to the modestly positive outcomes, but there was no direct "untreated" comparison group included in the study.

While the authors state that the funding agencies had no role in the study design or conduct, it is difficult to ignore the U.K. government's strong stake in a good outcome. The study was funded by the country's Medical Research Council, Department of Health and Department for Work and Pensions. It was conducted for the benefit of making or revising health policy for the treatment of CFS by the National Health Service. It came at a cost of some 5 million pounds (British) or $8 million (U.S.). In essence, it was too big to fail to reinforce existing U.K. policy that favors provision of psychological approaches over medical ones.

The size and scope of this study make it the biggest clinical trial of any kind for CFS, even if you weed out the participants who didn't meet the standard research criteria for CFS and evaluate it on the basis of the 400 subjects who did. It is bound to be cited as the gold standard for years to come, even with its many weaknesses. Subgroup and cost-effectiveness analyses are yet to come. Even so, it's hard to imagine that it was worth $8 million to obtain the data on slim gains achieved in such an artificially constructed setting.

The CFIDS Association of America is committed to advancing research that leads to the early detection, objective diagnosis and effective treatment of CFS. The scientific and medical communities are obligated to understand the biological roots of CFS so that targeted and effective treatments can be made available to the millions of people around the world whose lives have been derailed by CFS.
 

CBS

Senior Member
Messages
1,522
I know that the results right now are highly skewed towards the CAA needing both a change on direction and new leadership. Even if you don't agree with the majority, I want to encourage everyone share their opinion.

As for Justin's question, it is my understanding that you need to sign in to vote and you can't vote more than once. Still, this is not a "scientific poll" but rather a "self-selecting" poll. Even so, given that PR is thought to be relatively more supportive of the CAA than some other sites, I do hope that the CAA is listening.

Is Kim McCleary synonymous with the CAA? Where does the CAA end and KM start? Where does the CAA board stand on this? Does the board think that the CAA has a problem (if nothing else, a problem connecting with the patient community)?

The debacle that was the CAA's initial handling of the PACE trial comments to the press is not out of character with past experiences. IMO, the summaries of the limitations of the PACE trial that were posted on the CAA were just sad. Not terrible, just sad. That train left the station and was three days down the track when the summaries were posted. I don't think there's much chance of getting world-wide press coverage for the KM's summaries.

As for the impact of the PACE trial, in KM's own words: "It is bound to be cited as the gold standard for years to come, even with its many weaknesses." It will not only be cited, it will have been given credibility (in spite of it's many weakness that were left unexposed) by the CAA's initial response, the response (more like an endorsement without qualification) that was heard around the world.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Is Kim McCleary synonymous with the CAA? Where does the CAA end and KM start? Where does the CAA board stand on this? Does the board think that the CAA has a problem (if nothing else, a problem connecting with the patient community)?

Not sure exactly what you're driving at with the first two questions, other than what you're asking in the last two.

Of course the Board is at the 'top' of the org and hires and fires the CEO and tells her what to do. So they need to be held responsible. If you're asking whether Kim has entrenched herself so well in CAA that she effectively pulls the strings. I think the answer is yes. Whether the board chooses to let her hold on to those strings in light of this increasing crisis of confidence will be very interesting. As I said about a year ago, I think the board is derelicting it's fiduciary duty of absolute loyalty to caa by allowing McCleary to drive the org into the ground to the point that it will have to dissolve at some point in the not too distant future.

fwiw- as i've said before i'd like to know answers to these last two questions. Jennie said in comments to the interview article that the board does not want to get rid of McCleary or reduce her $178K compensation (including benefits). In fact Jennie, at least, feels that's a bargain for her. I wonder if all this has been a wake up call for them. nothing else has, but now the cries of dissatisfaction are operatic. If the end results of the poll are as now- 94% want her to go and caa change direction- i think they will lose what little fig leaf of credibility they had.

In light of this, I am beginning to wonder who their donors are if they are so recalcitrant to change. Someone speculated to me they might be insurers. The board seems to think it can operate with total impunity. They are smart people. Smart people would realize they needed to change if they depended on the support of patients at large since in this unscientific rough poll 94% are extremely unsatisfied. Is the fact they are not changing because a major donor or donors is somehow connected to the insurance industry or CDC? Obviously we don't know because CAA will not reveal the identity of it's donors. If they do not get rid of McCleary, this question needs to be squarely addressed.

...given the breadth and amount of the work our CEO does, we could not hire one person to replace her (if we wanted to, and we don't). Two or three people would be required to replace her experience, skill set, and work product. If you multiply the figures from these surveys times two or three people, then clearly, the Association is getting a bargain.
 

*GG*

senior member
Messages
6,391
Location
Concord, NH
10 years ago Marc Iverson resigned from the CAA, the organization he founded, due to major disagreements with Kim McCleary, as explained in his resignation letter below.

How much has changed since then?

http://www.co-cure.org/Iverson.htm

Thanks for this link, WOW, some things apparently never change, perhaps that is why our situation just seems to stay the same?!

Time to talk to my sister so she quits donating to them, seems like a waste!

GG
 
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