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

[Gerwyn]

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.

agree totally

 

[Gerwyn]

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.



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?



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.

Is CFS multidimensional -How? subsets that is an unproven assumption I think that dr Mikovits has shown more skill leadership talent and knowledge than anyone in the CAA

XMRV as a simple explanation yes isuppose like HIV is a simple explanation in AIDS perhaps it does not take accounts of the subsets though or the heterogeneity

Subjective arbitary labels create artifacts just because there is apparent "heterogeneity" and "subsets" does not mean they actually exist independently of the labels used

 

[justinreilly]

Support for Anyone Willing to Attempt to Get on CAA Board

Looks like people think Kim would do a great job (I do too). I have PM'd her to see if she has any interest.

Getting one person on the board would be great since then she/he can keep our point of view in front of the board at every monthly meeting/teleconference. Two directors would obviously be even better for moral support of each other and dispelling the notion (if the board has it) that our suggestions are from a fringe minority. This would, I think, at least relieve some of our frustration (provided we feel the Board is actually listening to what our director says).

Even if we can't get someone on soon, pls keep this idea in the back of our minds as something to work toward.

I propose that we and anyone else who is nice enough to volunteer can form an informal group to give support to anyone chosen for the board. I unfortunately can't give a lot of help because, as most of us are, I am very sick and my financial situation is really bad. I can offer limited help writing statements/letters/short presentations and limited (mostly off the cuff) legal advice on such things as corporations, administrative law, public choice theory (how agencies and congress work in practice) and litigation. Anyone else feel they can offer some support?

 

[starryeyes]

I'm good at cheerleading. :victory::victory::victory::victory::sofa:

 

[justinreilly]

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.

Jennie,
Thank you for the info. As always, I learn a lot from you.

I wasn't implying that there was anything shady about it. I got a misimpression from the annual report because I am not familiar with Generally Accepted Accounting Principles. I just thought I'd throw it out there in case there was anyone else who might make the same mistake.

 

[justinreilly]

Kim emailed me that she can't take on another commitment like CAA director.

This may have to just be on the back burner as something to work towards, as i said previously.

 

[justinreilly]

CAA Won't Change Without More Financial Pressure

Thank you, CBS, for your very good points.

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?

Well, this is a good point. It wouldn't be pretty.

I think I gave the misimpression that I want CAA to die. I don't.

My central point, which I didn't make very well, is I think CAA changing in the way we want it in the near future is very unlikely if we keep doing what we've been doing- only complaining. I think the only way CAA will change is if it sees a substantial drop in revenue. I know that the CAA directors and officers are smart and they will do what is necessary to prevent a steep slide in CAA's revenues, ie listen to patients more and change accordingly.

In the quite unlikely event that CAA did fail, this would most probably take several years, during which time other orgs could ramp up.

CAA has a great research program. But there are other equally good places to put money- my choice would be WPI- until CAA changes.

When CAA changes, I will do everything in my power to support them!

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.

I agree 100%.

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.

I disagree- see my first paragraph, above.

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

I wasn't attacking them, pls see my post in response to jspotila, above.

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.

I think that Dr. Mikovits is too strident in her beliefs that XMRV is definitely the sole cause of ME. I think it will be shown to be a major cause, but in my view, probably in conjunction with other retroviruses and retrovirus/virus hybrids like CAV, JHK and Martin's hybrid.

[Edit- Valia, Gerwyn, Oerganix, Cloud astutely pointed out that Dr. M has not said XMRV is the cause of ME, only that there was the strong association observed in the study. Apologies.]

I think the advocacy and PR that WPI has done so far has been superb. I would rather they tell it as they see it and sometimes go beyond what I think is warranted than to be constantly underplaying like CAA. Andrea Whittemore's comments at the Oct. CFSAC meeting and her quote in the NYTimes- "I blame CDC for this mess"- felt so cathartic for me that I can easily forgive some differences I have. I think most patients feel similarly.

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.

I totally agree.

 

[justinreilly]

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

This is a great question, Tina. For advocacy I would give to WPI, PANDORA and Malcolm Hooper.

I think WPI's ad hoc advocacy/PR has been great- pls see my post in response to CBS. They will also be a center for treating patients and training ME/CFIDS specialists.

I don't know a lot about PANDORA, but I've only heard good things. They do limited advocacy and have helped set up a Neuro Immune Diseases center in FL and working on one in NJ.

Malcolm Hooper is not in the US, but he is a very efficient and effective thorn in the side of the UK NHS and the Wessely school and every blow to the Wessely school improves the lives of all pwME around the world.

 

[valia]

I think that Dr. Mikovits is too strident in her beliefs that XMRV is definitely the sole cause of ME. I think it will be shown to be a major cause, but in my view, probably in conjunction with other retroviruses and retrovirus/virus hybrids like CAV, JHK and Martin's hybrid.

Hi Justin,

I don't think Dr Mikovits has ever said she believes XMRV to be the cause of M.E, only that they have found it, the connection and whether or not it is the cause is not yet known.

 

[Gerwyn]

she has never stated that xmrv is causal.the stridency is originating from the peopled phillosophically opposed to the notion that it could be

 

[oerganix]

Kim emailed me that she can't take on another commitment like CAA director.

This may have to just be on the back burner as something to work towards, as i said previously.

What about Mary Schweitzer?

As for Mikovitz being "strident", I personally haven't heard any stridency from her, tho I can't claim to have heard or read everything she's ever iterated. "Passionate" is the word I would use to describe her....and I like well-tempered passion from a well-prepared mind. Maybe it's a sense of passion that is missing from CAA...and there's a sort of deja vu with the Reeve's-like comments on the last failed studies.

 

[Cloud]

she has never stated that xmrv is causal.the stridency is originating from the peopled phillosophically opposed to the notion that it could be

Agreed! Amazing how things can become so distorted.....far as I know she only stated a ""strong association" between xmrv and cfs. WPI has been adamant that the xmrv/cfs discovery does not prove causation. I think Dr Judy is awesome....we need that kind of passion in our corner.

 

[justinreilly]

Valia, Gerwyn, Oerganix, Cloud-

Sorry! I must have subconciously incorporated the propaganda of Wessely (who has implied in BMJ that they are asserting this). Thank you for your important correction. I feel much better about Dr. M now. I agree her and Andrea Whittemore's passion is a very welcome breath of fresh air. They are heros.

(Incidentally, I remember Dr. Coffin saying at the CFSAC that one did not know at this time whether XMRV was causal or opportunistic, but he thought it was probably the cause. So, I'm definitely not trying to say I think XMRV isn't causal.)

 

[justinreilly]

What about Mary Schweitzer?

I emailed her. I'll let you know.

 

[justinreilly]

Prof. Mary Schweitzer, PhD willing to serve on CAA board.

I think she would be an excellent candidate. Obviously she is has written and spoken very intelligently on ME/CFIDS. She is an expert in scholarship generally and in the politics, history and medicine of ME/CFIDS specifically. I hope the board would not let the fact that her well-considered views on advocacy differ from theirs to predispose them against her candidacy.

Her C.V.:
http://www.cfids-me.org/marys/vita.html

Her essay "Who am I?":
http://www.cfids-me.org/mystory08.html

Her blog:
http://cfsknowledgecenter.ning.com/profiles/blog/list?user=32qw535d82un8


Jennie- It seems that the number of board members is open ended. Would the board consider an applicant at this time?

 

[parvofighter]

YES for Dr Schweitzer

Prof. Mary Schweitzer is willing to serve on the board. I think she would be an excellent candidate.

I agree justin and others - she'd have my vote.

Parvo:Retro smile:

 

[jspotila]

Jennie- It seems that the number of board members is open ended. Would the board consider an applicant at this time?

We have an annual timeframe for nominations, but I will pass the question on to our Chairman. Please see my post here for information on how Board members are actually elected.

 

[MEKoan]

Mary Schweitzer!

Really, she would?

YOWZA!!!

That would change everything!

wow!

 

[Dorothy]

I feel the same way!!! I've always admired Mary's Schweitzers' writing and keen intellect, and really appreciate her past presentations at the CFSAC meetings as well as other advocacy efforts. She'd be a FANTASTIC addition to the CAA board. Definitely a game changer.

 

[starryeyes]

if the CAA really does start advocating for us? If they are really interested in serving us, people with CFS/ME, then they will be open to having a highly qualified person on their board who knows how to be a good advocate for us. Mary Schweitzer would be absolutely wonderful!

I can't imagine what it would be like to have an advocacy organization that we could rely on to look out for our interests!

Yes it really would. I would love to see Mary on the Board.