Time for the Big Talk. How's the CAA doing?

[mezombie]

Yes to the clapping problem!

And the inability to even move the arms later.

I also experience temporary paralysis sometimes as a result of over-exertion: I literally cannot get my arm, leg, head, whatever to move, no matter how hard I try.

 

[dancer]

Me too to the clapping problem! I'm so glad to someone mentioned it. It's such an odd comfort to know it's not just me.
I also noticed (back in acute mono, but before the cognitive loss when I could still read) that holding a paperback to read felt too difficult.

 

[justinreilly]

Post Exertional Morbidity

I nominate Justin for Wordsmith of the year for the more accurate "PEM" as Post Exertional MORBIDITY.

I would state that increased morbidity has been due to more than 'exertion,' many events or episodes of injury or illness, etc. have set up a worsening of morbidity that lasts days, weeks, or months. Perhaps 'Post Event Morbidity' is even better?

Thank you, Stuart!

I encourage everyone to start using their own favorite terminology! Anything is better than 'malaise' and 'chronic fatigue'.

I like Post Exertional Morbidity because it fits into the preexisting "PEM"; also Morbidity has a scientific ring to it. As you probably know, it's 'science' for 'illness/disease' and 'illness burden' so it works to emphasis that exertion worsens the actual illness, as opposed to exertion precipitating an episode of lack of motivation or depression. I like also post exertional exaccerbation (but this doesn't fit into PEM).

Stuart has a great point about any physical insult causing 'PEM'. And "event" fits into PEM. My only critique is that perhaps the meaning of 'event' can be manipulated in the hands of the psychs. I can see them saying 'keep these people away from 'events', ie any gathering of people, because they have agoraphobia and social anxiety, ie Post Event Malaise/Morbidity. (Post Exertional Morbidity, for example is good because it paints a picture for the vast majority of doctors and people who don't know anything about ME; whereas 'event' is more nebulous).

 

[Hope123]

This is what I think the 25% is. It is the ones who are diagnosed who are on disability, that is get government benefits because they can't work full time. (by the way, many with CFs are likely working part time. I am one of them)

Tina

This isn't just for Tina but I'm just going from this conversation. I tried to find the origin of that number before. I think it comes from AFME surveys in the UK when they asked people at their worst, were they ever homebound or bedbound? The figure was 25% one year and around 700+/2500 in 2008 so I think that's where it comes from.

Here are some stats Jspotila referred me to a while ago, from the online survey CAA did last year. They did not ask about homebound and bedbound, which I hope they do in the future as there are no stats for the US in this area I know of. A little over 1,700 people answered:

63.3% are fully or partially disabled or retired from work.
25.8% of respondents work in a position that reflects their training and education, but only about half of these people work full-time in that position.
17.3% report that they work full-time, but one-third of these people are not working in their chosen field.
60.1% must rely on another individual for at least partial basic financial support; most of these people (78%) rely on their spouse or significant other; parents provide financial support to 17% of those who need financial help.
47.7% of participants receive some form of disability benefits (public, private or both); only 5.5% had applied for benefits but were denied coverage.
47.1% are covered by employer-provided health insurance (through their own employment or their spouses); one-third have coverage through disability or retirement benefits (largely government-provided Medicare and Medicaid programs). 9.5% have no medical insurance coverage.

 

[justinreilly]

Anyone Willing and Able to Join CAA Board? We need you!

On the CAA is Listening thread, I asked Jennie about how Directors are appointed:

Original Post by justinreilly:

Board Perpetuates Itself

Quote Originally Posted by jspotila View Post
The Board has a nominating committee which is charged with, among other things, seeking candidates for the Board. Typically, we draw from patient advocates (a certain % of the Board must be patients per our by-laws) and people who have relevant professional expertise (marketing, strategic planning). There is an interview process, and the committee presents nominees to the Board for election (or not). This election process is typical of many non-profits, both within health related groups and other contexts.


Thanks, Jennie. A thought is that this tends to perpetuate board control and policy as opposed to allowing for change directly reflective of the desires of the 'membership'/ donors/ patients that would result from 'member'/donor/patient election of the board.

The only sure way to change CAA, or any other corporation, is to control the board. Unfortunately, CAA has the above process in place which allows the board, not the 'members'/patients, to elect the board. So there is no way to get board members in without the approval of the current board.

That said, I still think it would be a huge bang for our buck to try to get people from this forum or our sympathizers on the board. I do not have the ability to donate the required time to the board. Is there anyone else that is knowledgeable, committed to CAA being better advocates and can commit the time necessary to the board? We need you!!

 

[Navid]

On the CAA is Listening thread, I asked Jennie about how Directors are appointed:



The only sure way to change CAA, or any other corporation, is to control the board. Unfortunately, CAA has the above process in place which allows the board, not the 'members'/patients, to elect the board. So there is no way to get board members in without the approval of the current board.

That said, I still think it would be a huge bang for our buck to try to get people from this forum or our sympathizers on the board. I do not have the ability to donate the required time to the board. Is there anyone else that is knowledgeable, committed to CAA being better advocates and can commit the time necessary to the board? We need you!!

I would vote for Kim!!!!!! She's smart, organized, writes well and cuts thru the BS to get right to the point. She's also diplomatic and calm. Wow, how do I know all this just from some posts on a board...it's amazing. I mean this with all sincerity.
Go Kim!!!!!!

 

[Mithriel]

Th 25% group took it's name from Ramsay's work and has been in existence for years - long before AFME turned to the dark side even :Retro smile:.

Do you know of Ramsay in the US? He was the Royal Free doctor who did so much for people with ME. He defined ME and fought for the patients.

Mithriel

 

[mezombie]

Hi Mithriel,

I am trying to educate people about Ramsay-defined ME with my signature. I hope people click on the link!

 

[Stuart]

Thank you, Stuart!

I encourage everyone to start using their own favorite terminology! Anything is better than 'malaise' and 'chronic fatigue'.

I like Post Exertional Morbidity because it fits into the preexisting "PEM"; also Morbidity has a scientific ring to it. As you probably know, it's 'science' for 'illness/disease' and 'illness burden' so it works to emphasis that exertion worsens the actual illness, as opposed to exertion precipitating an episode of lack of motivation or depression. I like also post exertional exaccerbation (but this doesn't fit into PEM).

Stuart has a great point about any physical insult causing 'PEM'. And "event" fits into PEM. My only critique is that perhaps the meaning of 'event' can be manipulated in the hands of the psychs. I can see them saying 'keep these people away from 'events', ie any gathering of people, because they have agoraphobia and social anxiety, ie Post Event Malaise/Morbidity. (Post Exertional Morbidity, for example is good because it paints a picture for the vast majority of doctors and people who don't know anything about ME; whereas 'event' is more nebulous).

Yup, I get how it can be twisted, darn!

"Exertion" may be the best word if given the right context. It seemed irksome that it might be placed soley in the 'exercise' context ala CBT/GET. When it can be many things that 'exerts' a draw down of resources to increase morbid symptomology.

 

[justinreilly]

Don't Support CAA Financially, Even Its Research

I understand what some other posters here have said that while CAA's advocacy/education/PR leave a lot to be desired, that we should financially support CAA's research efforts. I agree that CAA has a great research program now. Thank you to CAA for that.

That said, I think it is important not to support CAA financially at all. Here's why:

(1) Unless something fundamentally changes soon (I am not holding my breath) we're better off if CAA dies. The money that currently goes to CAA would go to more effective and efficient orgs that really are in our (patients') corner such as WPI. Another org would arise or rise to fill CAA's place and almost surely do a better job.

(2) CAA is not going to change significantly unless it's survival is threatened. We have seen over the years that CAA doesn't advocate well for, or feel beholden to, patients. Patients have long expressed their dismay, but CAA doesn't change. If CAA's Directors and Officers see that CAA's survival is threatened, they will be motivated to act. And if not, CAA will die and we will be better off.

(3) This last point is much less important than the two above. Some of that research funding goes to Susan Vernon's salary. I'd rather my money go to Dr. Judy Mikovits' and Dr. Peterson's salaries. In it's accounting, CAA puts much of the cost of salaries under it's programs rather than its "management and general" category. eg The latest annual report (2008) says that 8% of CAA's budget goes to 'management and general'. http://cfids.org/about/annual-reports.asp While 9% of CAA's budget goes to Kim McCleary's salary alone. charitynavigator.com.

Edit: When CAA changes I will support them fully!

 

[usedtobeperkytina]

But, can we consider WPI to be advocacy? And if CAA is not doing good advocacy, then who do we give money to for advocacy? I am not talking research money. There are many choices for research money. But for lobbying, PR, etc, is that what WPI does?

Tina

 

[jspotila]

Everyone is free to make their own decisions about what organizations to support, if any. Everyone should be an educated consumer about where to invest their charitable contributions (both CFS and non-CFS organizations). justinreilly has expressed his very strong opinion, as is his right.

I will only comment on the statement that "In it's accounting, CAA puts much of the cost of salaries under it's programs rather than its "management and general" category." This is 100% appropriate and consistent with best practices in non-profit accounting. Every non-profit does this. The Association engages an independent field audit every single year. This means that accountants come in, spend several days looking at anything they want in our office, and then complete an audit report that goes to the Board (as required by the IRS and our by-laws). The Association's accounting methods and policies are correct, appropriate, and independently audited each and every year.

 

[Dreambirdie]

I agree completely with justinreilly. I don't think CAA is going to change unless someone from this forum joins them and changes them from the inside.

I also think KIM would be the right choice, and a great asset to CAA--to clean 'em up and get them straight on what their job is.

The key word is: INFILTRATE. :victory:

 

[starryeyes]

What is totally weird to me is that these hard liners are agreeing and emphasizing PEM. Peter White says that PEM is a cardinal feature. The NICE definition is the Oxford definition (merely idiopathic chronic fatigue) plus PEM. The UK psych CBT emphasises pacing to prevent exertion and crashing.

Yet they still push their harmful GET and CBT that says exercise has been proven to only help you and never harm you and that you have 'erroneous beliefs' that have to be corrected.

They're taking their "let's see how much damage we can do to the patients and still get away with it" core approach and pushing it to the maximum extreme. They're actually admitting PEM is perhaps the central feature of ME and then pushing a 'therapy' CBT that says the exact opposite in a demeaning way to patients and forcing patients to exercise. It's sickening and bizarre.

I agree with Justin and DB. I won't support the CAA financially unless they change. We've made it perfectly clear what they need to do. It would be great if someone who agrees with us would infiltrate the CAA. They need a do-over.

 

[Jerry S]

I agree with Justin and DB. I won't support the CAA financially unless they change. We've made it perfectly clear what they need to do. It would be great if someone who agrees with us would infiltrate the CAA. They need a do-over.

Same here, tee, Justin, and DB.

 

[CBS]

Support CAA Financially, Especially (if only) Its Research

I understand what some other posters here have said that while CAA's advocacy/education/PR leave a lot to be desired, that we should financially support CAA's research efforts. I agree that CAA has a great research program now. Thank you to CAA for that.

That said, I think it is important not to support CAA financially at all. Here's why:

(1) Unless something fundamentally changes soon (I am not holding my breath) we're better off if CAA dies. The money that currently goes to CAA would go to more effective and efficient orgs that really are in our (patients') corner such as WPI. Another org would arise or rise to fill CAA's place and almost surely do a better job.

Justin, Are you serious? How long do you think that it would take for this other organization to 'rise?' And from what would it rise and how would it gain the credibility needed to join a program such as the Genetic Alliance?

And while I have criticized several advocacy and education positions adopted by the CAA recently and in the past, the most radical stance I would consider is that the CAA take a very close look at the standards that it has set for its research programs ask if their advocacy efforts meets those same standards.

The CAA is small and I do think that it is past time that the CAA ask in a serious way, if it can't maintain consistent standards across all of its efforts, would we be better off if it stopped trying to do everything. I could see a possible replacement on the advocacy end taking two or three years to get up to speed (at the very fastest) but the CAA can stop doing damage on the advocacy front today.

As for the research side of the CAA. I think that we're talking a decade and I (and I suspect many others here) don't have another decade to wait for something else to magically rise and match the CAA's research program. And from what? Not even the IACFS/ME is in a position to do what the CAA is doing on the research front.

(2) CAA is not going to change significantly unless it's survival is threatened. We have seen over the years that CAA doesn't advocate well for, or feel beholden to, patients. Patients have long expressed their dismay, but CAA doesn't change. If CAA's Directors and Officers see that CAA's survival is threatened, they will be motivated to act. And if not, CAA will die and we will be better off.

You don't have to kill the CAA to get the message across (except maybe the message that CAA patients are so angry and frustrated that they'd cut off their nose to spite their face). Directed donations to research or no donation and a strong message about how you will support them when they address their advocacy problems but no delusions about how a replacement of the CAA's uniquely coordinated and collaborative research program will magically rise again with the next group that comes along?

(3) This last point is much less important than the two above. Some of that research funding goes to Susan Vernon's salary. I'd rather my money go to Dr. Judy Mikovits' and Dr. Peterson's salaries. In it's accounting, CAA puts much of the cost of salaries under it's programs rather than its "management and general" category. eg The latest annual report (2008) says that 8% of CAA's budget goes to 'management and general'. http://cfids.org/about/annual-reports.asp While 9% of CAA's budget goes to Kim McCleary's salary alone. charitynavigator.com.

And please, no more blanket attacks on the CAA staff about their motives and their efforts.

I respect Dr. Peterson and appreciate Dr. Mikovits' enthusiasm and outspoken support of the CFS community but in the case of Dr. Mikovits, don't confuse outspoken support with always doing what is best for CFS research and the CFS community. She's generated a lot of unneeded heat and friction. Lost energy that could have gone into more research.

I am as optimistic and hopeful that the XMRV research will pay big dividends for the CFS community as anyone but I strongly suspect that while Dr. Mikovits' deserves a very large measure of the credit for infusing CFS research with a much needed burst of interest, I have serious doubts about whether or not she is someone with the experience and skills to take this to the next level.

Either way, CFS is far too multidimensional and the patients are far too heterogeneous to put all of our eggs in the XMRV basket. And where are you if research into CFS revels an XMRV subset and you're negative? As appealing as a simple explanation may be, it is a dangerous game to bet the house on one answer and even more so on one or two researchers.

The CAA has got to stop doing harm with its CBT and GET recommendations and they must start taking much better care with every word they print. Be angry and don't settle for less than we all deserve but be constructive and come to the community with a better idea.

That said, we need to support what the CAA is doing right.

 

[Kati]

What CBS said. Being positive and constructive is good for our health.

 

[starryeyes]

I don't mind if the CAA stays operational as long as they stop educating our doctors that CBT and GET work for ME/CFS and as long as they stop trying to cause doubt about the WPI. Right now, they are not the support group for ME.

 

[CBS]

I don't mind if the CAA stays operational as long as they stop educating our doctors that CBT and GET work for ME/CFS and as long as they stop trying to cause doubt about the WPI. Right now, they are not the support group for ME.

Teejkay, I agree with your concerns about CBT abd GET. This needs to stop now. And I respect that your concerns lead you to the conclusion that the CAA is not the group for you. Thanks.

 

[Gerwyn]

I suggest that we have a serious discussion about the CFIDS Association of America and their role at the dawn of the new XAND epoch.

Because of both the general nature of its reaction to this new beginning, because of a number of statements that the groups made online, and because of specific statements from important CAA leaders, I am led in an unsettling direction: I am led to question the CAAs priorities in a number ways, I am led to wonder about the motivations of certain CAA personnel, and I left wondering what role it should play from here on out.

I could mention the lackluster reaction of the CAA to the XMRV news (and compare it to the reaction of the European ME alliance). I could mention the weird Facebook postings that heralded failed replications of prostate cancer/xmrv studies (though later the CAA insisted they were trying to aid the CFS community). But the most worrying thing has been Dr. Vernon's reaction to the new XMRV era.

To make my point, I refer to Hillary Johnson's most recent blog post. In this paragraph she imagines a conversation with William Reeves at the CDC.

"Bill is so out of his league here, but thats hardly news.

Heres another: Bill says he cant interpret the findings because Science didnt state the age and gender of the patients. Since when do viruses respect or differentiate between men and women, kids and grown ups? A person could only say such a stupid thing if they didnt believe XMRV existed, had gone fishin during Virology 101, or had some political agenda that might be characterized as propaganda. Bill also suggested the paper didnt mean much because he, Bill, didnt know how the patients were selected. The patients were clinically defined by every medical criteria, including the CDCs. What more does Bill want? Does he need to be assured theyre all overweight depressed women living in Wichita who Bill rounded up in a phone survey?"

Alas, you could replace the name "Bill" in the paragraph above with "Suzanne." Vernon's reaction mirrored Reeves' in that she expressed strange doubts that don't fit science.

...

I leave it to others to analyze why Vernon and the CAA are reacting like this. I don't think vast CAA-CDC conspiracies are necessary. I think we can argue from some basic principles about how threatened professionals and organizations react.

In any case, thumbs up or thumbs down, I think we have some texts on which we can base a serious debate about the CAA's performance in the first few weeks of the xmrv era.

I don't write to attack the CAA. It's arguable that when facing an ineffective CDC and a medical community that's always been incurious in the area of CFS/XAND we need to circle our wagons. But if we decide that the CAA is shooting inward there's no point in defending them.

******************************
Vernon or the CAA has since edited the "Xplained" article to remove the section that mirrored Reeves.

I have to agree I think that Vernon has been sadly lacking in this area and her comments from a scientific perspective are quite extraordinary.She co wrote a paper highlighting problems trying to compare trial results using different selection criterea and then remains silent on this issue.She made numerous erroneous pronouncements without checking the facts that i was able to confirm with two simple emails.