Article: Not One Alone: CFIDS Association Board of Directors Take a Stand For the Power Of 'We'

parvofighter · Dec 7, 2010

Discussion on CAA's Strategy - 3

<link rel="File-List" href="file:///E:%5CDOCUME%7E1%5CDANIEL%7E1%5CLOCALS%7E1%5CTemp%5Cmsohtml1%5C01%5Cclip_filelist.xml"><o:smarttagtype namespaceuri="urn:schemas-microsoft-com

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ontGrowAutofit/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><style>  </style> Will the WPI solve CFS?:

Cort said:
Are you actually saying the Annette Whittemore and the WPI will solve CFS?

Depends what you mean by, "solve". If you mean, turbo-charge ME/CFS profile and research so that we arrive at a cure THIS decade, not next century, then "yes". If you mean, arrive at the possible CAUSE of ME/CFS a retroviral infection then yes. If you mean, answer every single question about ME/CFS, then obviously not - that is an impossible, and might I add, booby-trapped question. What I DID say:

parvofighter said:
How is it then, that Annette Whittemore and the WPI have singlehandedly achieved more traction internationally for ME/CFS socio-political issues AND science in 2-3 years than the CAA has achieved in America in 20?

To paraphrase, the WPI have done more for our understanding of ME/CFS in 2-3 years than the CAA in 20. THAT calls for some serious self-reflection, and a strategic overhaul and leadership review. It would in any credible organization.

Cort said:
Are you saying because one researcher made the big discovery that everyone else should just fold their tent???

Cort, your editorial licence is legendary, but misleading and exhausting. No, I did not say this, I said:

parvofighter said:
A brutally frank evaluation of this tipping point must happen, for the CAA to have any chance of relevancy or meaningful momentum in the next 2 decades - much less the next 2 years.

The fact is, the CAA brutally missed the boat, and their current research focus was far off the target of a CURE. Again, that calls for a top-down strategic/leadership overhaul. Perhaps you follow politics: its called a Vote of No Confidence.

?!

Cort said:
Yes the WPI did the research - but once they found it there was no novelty to what happened afterwards...the next steps were clear..sequence it, try and grow it, see if it can infect other cells - this was not Nobel prize winning stuff - this was finding a bug and then doing the established procedures........It didn<st1ersonname w:st="on">'</st1ersonname>t take great insight or even leadership - it just took doing the steps one after another. You can do really important work without having stunning insights into something.

Cort, are you familiar with the term, professional suicide? Do you really look upon the WPI and the patients who depend on a cure ASAP with such disdain? And where, might I ask is an iota of grace or humility, or acknowledgement that the WPI turned the ME/CFS world on its head? Where also, is the recognition that no one other than the Science team has yet done the full-9-yards: sequenced it, grown it, or transmitted it from the blood of ME/CFS patients (pending Dr Singhs publication). Where is the recognition that Dr Alter himself - winner of the Lasker award - said the WPI had done more extensive work than them (FDA Briefing)? That the WPI study was more advanced than theirs? Cort, you do many fine things for the CFS community, but revisionist history and professional grace are not among them today.
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Perhaps some facts are in order:
If Annette Whittemore hadnt been actively searching for (and willing to fund) a cure for Andrea, her friends at the yacht club wouldnt have put Dr Mikovits in touch with Annette
If Annette hadnt funded Dr M, Dr M wouldnt have had the opportunity to see a presentation on ME/CFS, to hear about Mantle Cell Lymphoma in ME/CFS patients, and to say, Thats a Retrovirus! Why didnt Dr Vernon say that? Or Kim McLeary?
If WPI and Dr M hadnt had serendipitous contacts with the Ruscettis and Dr Silverman and Joe De Risi, they would neither have pursued the RNase-L similarities between prostate cancer and ME/CFS nor discovered XMRV in ME/CFS.
If all of these people hadnt been meticulous scientists, the Science team wouldnt have used 4 methods to detect XMRV. But it all started with Annette Whittemores determination, drive, and crystal clear vision: to find a cure for ME/CFS.
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Cort, if everything is as basic as you make it seem, WHY, pray tell, couldnt the multiple zero/zero studies find XMRV at all? Why couldnt the zero/zero studies get the cohort right? Why couldnt they use 4, instead of 1 or 2 lab strategies to find the virus?
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The WPI has the maxim, Chance favors the prepared mindon their website. So true. The WPI was prepared and showing every sign of looking for a cure. The CAA wasnt. And THAT calls for a strategic and leadership review. Any student of organizational strategy knows that. Any follower of Malcolm Gladwells book, The Tipping Point knows that.
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In retrospect, its easy to look back and say things look obvious. But its also graceless and factually wrong.
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So lets add some levity to this: I bet you that Dr Mikovits will win a Nobel Prize within the decade. My punishment if I lose is I give you a Canadian beer and I have to drink an American beer. If I win, I can drink the Canadian beer, and youre stuck with the Yankie brewskiJ Either way, we get a beer. (And Im not being bigoted Im a dual citizen)

parvofighter · Dec 7, 2010

Discussion on CAA's Strategy - 4

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; mso-level-tab-stop:.75in; mso-level-number-position:left; margin-left:.75in; text-indent:-.25in; font-family:"Courier New";} ol {margin-bottom:0in;} ul {margin-bottom:0in;} --> </style> A need for BREAKTHROUGH change. There are a number of things we resoundingly agree on Cort, including the need for BREAKTHROUGH change and measurable outcomes and I would add, particularly at the CAA.

Cort said:
Agreed - BREAKTHROUGH Change.

But if you delve into the research on breakthrough strategy, it does not come from a history of incrementalism the modus operandi of the CAA for the past 20 years. You mentioned some of the CAAs accomplishments, and it may be helpful to stratify them from the perspective of the patient. One common way to evaluate successful execution of strategy in an organization is by dividing measurements into the following:
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Process measurements: What did the CAA do? For example, the CAA could measure:
[FONT=&quot]o[/FONT]How much money over a given period of time they have spent on viral research.
[FONT=&quot]o[/FONT]How many grant applications they have written
[FONT=&quot]o[/FONT]How many committees relating to XMRV they are serving on
[FONT=&quot]o[/FONT]How many Webinars they have conducted
[FONT=&quot]o[/FONT]How many clinical trials they are actively participating in
We hear a lot of process successes in missives from the CAA, and its a good measure of what theyre doing. How busy they are.
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Impact measurements: The next level of measurement looks at the short-term impacts of this busy-ness. For example, the CAA could measure:
[FONT=&quot]o[/FONT]What percentage of randomly surveyed patients stated they saw the CAAs, Faces of CFS campaign?
[FONT=&quot]o[/FONT]How many patient samples are in the CFS Biobank?
[FONT=&quot]o[/FONT]How many clinical trials are using the CFS Biobank samples?
[FONT=&quot]o[/FONT]How many stories from top media outlets as noted in the Not One Alone article, presented CFS as a serious, life-altering condition that affects millions and warrants more attention?
[FONT=&quot]o[/FONT]What percentage of U.S. GPs surveyed use the Canadian or Fukuda Criteria to diagnose ME/CFS?
[FONT=&quot]o[/FONT]What percentage of diagnosed ME/CFS patients have been tested for XMRV/MLVs?
[FONT=&quot]o[/FONT]What percentage of infectious diseases specialists are aware that ME/CFS may be of retroviral origin?
[FONT=&quot]o[/FONT]What is the average time-to-approval for grant proposals?
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Outcome measurements: But the rubber hits the road with OUTCOME measurements, and if the CAA had an aggressive, robust strategy, these measures would focus on outcomes that are meaningful to us, the CAAs bread and butter, the patients. The CAA is habitually reminding me of their busy-ness, what they are doing, and this belies a profound weakness in their strategic focus and leadership that urgently need to be addressed. A sophisticated, high-performing organization would never emphasize process or impact results to their constituents theyd focus their communications on the hardest nut to crack: the Outcomes, particularly in the case of the CAA, as it relates to Quality of Life for ME/CFS patients. For example, Outcome Measurements might include:
[FONT=&quot]o[/FONT]What percentage of ME/CFS patients in the <st1

lace w:st="on"><st1:country-region w:st="on">U.S.</st1:country-region></st1

lace> are undiagnosed?
[FONT=&quot]o[/FONT]What percentage of ME/CFS patients have an immunologist, ID specialist, AIDS doctor, cardiologist, or internist actively involved in their case?
[FONT=&quot]o[/FONT]What percentage of severe ME/CFS patients over the past year have improved by more than 4 Karnofsky levels?
[FONT=&quot]o[/FONT]What percentage of patients who have had ME/CFS for more than 10 years are able to work part-time or full-time?
[FONT=&quot]o[/FONT]What is the average time-to-diagnosis for a patient with ME/CFS?
[FONT=&quot]o[/FONT]What percentage of disability cases for XMRV+ve Canadian-Criteria patients are approved?
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The reality is that the CAA continues to advertise their busy-ness what they are doing how many grants they are getting how many clubs they are joining - rather than what they are meaningfully accomplishing for us patients. And this tells me that they havent passed Strategy 101, and that they need a kick-a$$ leader with a deep grasp of business management and strategy, who will revitalize their strategy and leadership from the top-down. What we need at the CAA helm is not necessarily an expert in ME/CFS, but someone who understands how to plan, execute and measure strategic outcomes in a not-for-profit organization. Possibly how to build and implement a public-sector Balanced Scorecard. But definitely how to develop a laser-sharp, organization-wide focus on OUTCOMES that are relevant to patients.
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And another item on my wish list. I believe that if the CAA were to adopt as part of their strategic overhaul, Big Hairy Audacious Goals (BHAGs) in their strategy as set forth by legendary Jim Collins in his book, Built to Last: Successful Habits of Visionary Companies, the contingent of deeply dissatisfied patients would dwindle.
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A true BHAG is clear and compelling, serves as unifying focal point of effort, and acts as a clear catalyst for team spirit. It has a clear finish line, so the organization can know when it has achieved the goal; people like to shoot for finish lines.<o></o>

Collins J., Porras J. Building your Companys Vision.

Harvard Business Review, 74:5, pp. 6577, 1996<o

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Heres a great example to hopefully kick off productive discussion on the whether the CAA needs a strategic and leadership overhaul. The December 6<sup>th</sup> News Release from the Spanish CFS League (http://www.facebook.com/photo.php?pid=5230892&id=815020522&ref=nf#!/event.php?eid=167694453269869 ) stated,
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ASSSEM<st1ersonname w:st="on">'</st1ersonname>s strategy (the Association of Health Professionals in support of ME) is to bypass the CFS units the goverment has set up (which are "fibro-parkings": they only park you with useless medication and cognitive behavior therapy) and go directly to the experts:
Immunologists (not many in <st1:country-region w:st="on"><st1lace w:st="on">Spain</st1lace></st1:country-region>),
Infectious disease specialists,
Virologists,
HIV doctors, etc.<o></o>
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Cort, you commented that the CAA is viable. Whether they are viable is irrelevant, and I might add is not a particularly inspiring measure of success. The key issue is whether they are obsolete, or whether they will nimbly adjust to the seismic shift in the CFS landscape. Given the CAAs inertia of the past 20 years relative to the WPI, it would indeed be nave to assume that the CAA will adjust to the times. There has been a merciful fracture in the CFS community with the discovery of XMRV/MLV/s. Just which population does the CAA intend to serve, given the necessarily divergent needs of these communities? Slapping the name ME/CFS on all groups doesnt cut it. ME/CFS specifically refers to the retrovirally-associated, neuro-immune disease. At least for now. And what about the antipathy towards the CAA? Doesnt that speak volumes for serious flaws in their strategy? What other patient advocacy group inspires such extremely negative emotions in a significant proportion of their constituents? Will the CAAs strategy and measures of success inspire confidence in the patients they are supposed to serve? The example in <st1

lace w:st="on"><st1:country-region w:st="on">Spain</st1:country-region></st1

lace> beautifully illustrates my point: if the CAA doesnt become relevant, and step up to the strategic plate, others will.
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This is well past my energy quota, so Im going to pass the baton on to others to discuss.

OverTheHills · Dec 7, 2010

Parvo,

Thankyou for your very thoughtful and analytic posts. I have no time now to do more than applaud and re-inforce one small point.

A mature, thinking organisation takes complaint/critique from its customers (not its competitors) as an opportunity for reflection and improvement. Parvo points out how many patients are dissatisfied & angry with CAA, I would suggest many more patients see them as irrelevant & ineffectual. They are losing market share.

Like every other sphere of life the internet is having a profound effect with patients, disabled as we are, now able to communicate, organise and act at grassroots level much better than before. Think of the changes to the music industry, to the media, the impact of Wikileaks on governments.

If the CAA wishes to retain even its current place in the ME landscape they need to refocus, become more effective, more accountable and more transparent. Same old same old will work for neither patients nor CAA.

OTH

Marty · Dec 7, 2010

Bravo, Parvo!! Every word!

gracenote · Dec 7, 2010

Thanks, Parvo. Very well said.

CBS · Dec 7, 2010

Parvo,

Thank you! Very well put. I am not comforted by the notion that an "advocacy" group simply continues to exist. I no longer have the luxury of being satisfied with busy-ness. There are a lot of nice, ineffectual, overpaid people in this world. They are of no use to me.

I don't feel well enough to add much more than that.

Cort · Dec 7, 2010

To paraphrase, the WPI have done more for our understanding of ME/CFS in 2-3 years than the CAA in 20. THAT calls for some serious self-reflection, and a strategic overhaul and leadership review. It would in any credible organization.

You are comparing apples and oranges! You could say the same thing about any research groups studying CFS. Do you want them to all undergo self-reflection, a strategic overhaul and leadership review. The WPI took Dr. Silverman's advice -rather belatedly from Dr. Lombardi's account and they looked for the virus he found in their samples. Then they did what any research institute would have done. That's it! Don't try to make this into something its not. Its a great discovery but there was no great insight into CFS - no doing anything that any other lab wouldn't have done.

Cort · Dec 7, 2010

To paraphrase, the WPI have done more for our understanding of ME/CFS in 2-3 years than the CAA in 20. THAT calls for some serious self-reflection, and a strategic overhaul and leadership review. It would in any credible organization.

You are comparing apples and oranges! You could say the same thing about any research groups studying CFS. Do you want them to all undergo self-reflection, a strategic overhaul and leadership review. The WPI took Dr. Silverman's advice -rather belatedly from Dr. Lombardi's account and they looked for the virus he found in their samples. Then they did what any research institute would have done. That's it! Don't try to make this into something its not. Its a great discovery but there was no great insight into CFS - no doing anything that any other lab wouldn't have done.

Perhaps some facts are in order.

If Annette Whittemore hadn’t been actively searching for (and willing to fund) a cure for Andrea, her friends at the yacht club wouldn’t have put Dr Mikovits in touch with Annette

I agree that some facts are in order. Dr. Mikovits did not discover XMRV. In a interview Dr. Lombardi stated that he had a graduate student look for it. He was the one with contact with Dr. Silverman - not Dr. Mikovits. He called it a 'shot in the dark' - which it was since CFS is nothing like prostate cancer. Dr. Singh noted how surprised she was that it showed up in a disorder like CFS......It was an absolute surprise....XMRV was supposed to be connected to the RNase L abnormalities in CFS - but in the end it wasn't. Talk about serendipitous...if they had uncovered that fact earlier no one ever would have looked for it in CFS...This time CFS actually lucked out.

This is not to diss the WPI - its a great discovery - and they were set up to look for something like; that was great thing, really - that Annette had set them up to take advantage of something like this. They are an Institute ploughing in to immune issues like no one else...that was not why they found XMRV, though. They actually missed in their pathogen arrays.. They found it because Dr. Lombardi had a connection with Dr. Silverman and agreed to look in their samples. Check out the interview on the Reno station if you don't believe me.

I would bring none of this up except that you use it to bash other organizations! To slam everybody else for missing XMRV.....to suggest that they should re-order their priorities is crazy...no matter how much you want to portray it that way finding XMRV was not the result of some intellectual achievement that made everyone else look silly....If you're going to give credit to someone give it to Annette Whittemore for building the WPI but slamming other groups is really kind of cheap. Other groups are doing fantastic, complex research....

If Annette hadn’t funded Dr M, Dr M wouldn’t have had the opportunity to see a presentation on ME/CFS, to hear about Mantle Cell Lymphoma in ME/CFS patients, and to say, “That’s a Retrovirus!” Why didn’t Dr Vernon say that? Or Kim McLeary?

She didn't say that either! She said that's a virus! That was way before XMRV ever showed up on the scenes. Good for her! The CAA does not, by the way, initiate research - they call for grant applications and then fund them. If you look you will find plenty of work done on viruses. (How often do I have to say this?). I'm not saying they are the WPI - the WPI is almost solely concerned with the immune and pathogens - good for them. The CAA's research involves that and other things - good for them too! Its all good research!

If WPI and Dr M hadn’t had serendipitous contacts with the Ruscettis and Dr Silverman and Joe De Risi, they would neither have pursued the RNase-L similarities between prostate cancer and ME/CFS nor discovered XMRV in ME/CFS.

I agree that those contacts were very important...very important...as you point out they were also serendipitous...its nice it worked out that way.

If all of these people hadn’t been meticulous scientists, the Science team wouldn’t have used 4 methods to detect XMRV. But it all started with Annette Whittemore’s determination, drive, and crystal clear vision: to find a cure for ME/CFS

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I'm not saying they are not meticulous scientists! They did a great paper...but don't use them to slam other researchers...there are lots of fine scientists.

Cort, if everything is as basic as you make it seem, WHY, pray tell, couldn’t the multiple zero/zero studies find XMRV at all? Why couldn’t the zero/zero studies get the cohort right? Why couldn’t they use 4, instead of 1 or 2 lab strategies to find the virus?

That is the big puzzle isn't it? How was a small lab able to do what all these other labs have not been able to do? I think we'll find out soon.

gracenote · Dec 7, 2010

Cort said:
Then they did what any research institute would have done. That's it! . . . Its a great discovery but there was no great insight into CFS - no doing anything that any other lab wouldn't have done.

I think this is a ridiculous statement. I'm speechless.

Kati · Dec 7, 2010

Cort; said:
You are comparing apples and oranges! You could say the same thing about any research groups studying CFS. Do you want them to all undergo self-reflection, a strategic overhaul and leadership review. The WPI took Dr. Silverman's advice -rather belatedly from Dr. Lombardi's account and they looked for the virus he found in their samples. Then they did what any research institute would have done. That's it! Don't try to make this into something its not. Its a great discovery but there was no great insight into CFS - no doing anything that any other lab wouldn't have done.

That's rather insulting and belittling don't you think?
Let's put it another way.
WPI is going after the goal: a cure for ME
CAA is in deep deep fog with no goal in sight. Just pills here and there (called self help) to make us feel better and keep feeding them money. (I don't buy into that)

Cort · Dec 7, 2010

[QUOTED]o you really look upon the WPI and the patients who depend on a cure ASAP with such disdain?[/QUOTE]

So now I am looking the patients who are looking for a cure with disdain??? Great!!! No

And where, might I ask is an iota of grace or humility, or acknowledgement that the WPI turned the ME/CFS world on its head?

I never said they didn't turn the ME/CFS world on their head? Of course they did! That's not the question. The question is should you slam other groups for not discovering XMRV??? I say no. Should other groups re-assess their leadership, their priorities etc. because they didn't discover XMRV? Should the CAA change its grant review process because they didn't discover XMRV? To all of that I say no!

XMRV was not discovered in CFS out of some extraordinary flash of insight...since that's the only reason I can see for suggesting that the CAA or some other research group should redo their programs, I suggest that you're making a logical error.

Where also, is the recognition that no one other than the Science team has yet done the full-9-yards: sequenced it, grown it, or transmitted it from the blood of ME/CFS patients (pending Dr Singh’s publication). Where is the recognition that Dr Alter himself - winner of the Lasker award - said the WPI had done more extensive work than them (FDA Briefing)? That the WPI study was more advanced than theirs? Cort, you do many fine things for the CFS community, but revisionist history and professional grace are not among them today.

Look they did a great paper. They acted very strategically...they could have published immediately...in which case it might have either ignored or not embraced. They must have recognized that danger and so they did all that work. That has ended up being a critically iimportant move. I think their decision to do that is the only thing that has saved XMRV from disappearing after the negative studies. It is what has had the FDA convene the BWG....it was what got Alter involved....it was probably what got Lipkin involved....Yes, that was a very, very smart decision - That's a very good point... Kudo;s to them. :victory::victory::victory:

Cort · Dec 7, 2010

And another item on my wish list. I believe that if the CAA were to adopt as part of their strategic overhaul, Big Hairy Audacious Goals (BHAG’s) in their strategy – as set forth by legendary Jim Collins in his book, “Built to Last: Successful Habits of Visionary Companies”, the contingent of deeply dissatisfied patients would dwindle.

“A true BHAG is clear and compelling, serves as unifying focal point of effort, and acts as a clear catalyst for team spirit. It has a clear finish line, so the organization can know when it has achieved the goal; people like to shoot for finish lines.”
Collins J., Porras J. Building your Company’s Vision.
Harvard Business Review, 74:5, pp. 65–77, 1996

This sounds good to me....

Here’s a great example to hopefully kick off productive discussion on the whether the CAA needs a strategic and leadership overhaul. The December 6th News Release from the Spanish CFS League (http://www.facebook.com/photo.php?pid=5230892&id=815020522&ref=nf#!/event.php?eid=167694453269869 ) stated,

“ASSSEM's strategy (the Association of Health Professionals in support of ME) is to bypass the CFS units the goverment has set up (which are "fibro-parkings": they only park you with useless medication and cognitive behavior therapy) and go directly to the experts:
• Immunologists (not many in Spain),
• Infectious disease specialists,
• Virologists,
• HIV doctors, etc.”

Cort, you commented that the CAA is “viable”. Whether they are viable is irrelevant, and I might add is not a particularly inspiring measure of success. The key issue is whether they are obsolete, or whether they will nimbly adjust to the seismic shift in the “CFS” landscape. Given the CAA’s inertia of the past 20 years – relative to the WPI, it would indeed be nave to assume that the CAA will adjust to the times.

We shall see. You see inertia - I see change all the time. Are you kidding? I see a Research Initiative, A Biobank, A commitment to get all the researchers on the same table, a Research Network that emphasizes collaboration and data sharing. I see three separ4ate research groups folding their research into each others projects. I see CAA funded researchers with seed grants getting full NIH grants. I see Banbury Conferences....and you are talking about inertia!!!!

. And what about the antipathy towards the CAA? Doesn’t that speak volumes for serious flaws in their strategy? What other patient advocacy group inspires such extremely negative emotions in a significant proportion of their constituents?

I agree with that! They have made some real errors. They have lost some patients - obviously not to all but a significant chunk; like I said they are still viable, they are still funding innovative research - they have their backers but mistakes, serious mistakes have been made. You cannot argue with results and an angry patient population is one of them. Mistakes have been made.

Will the CAA’s strategy and measures of success inspire confidence in the patients they are supposed to serve? The example in Spain beautifully illustrates my point: if the CAA doesn’t become relevant, and step up to the strategic plate, others will.

I agree! Its a competitive field. They are funded by donations...if they can't attract them they will not be here. But your argument is far too much for me...you go too far - obviously they are relevant - their research is relevant, their education efforts are relevant, their advocacy, while it is not what many of us want - is relevant.... This is not a black and white issue.

The CAA does some things very well and some things not very well......The WPI has not done everything perfectly either...So lets not protray either of them in a black and white way...

Cort · Dec 7, 2010

Roy S said:
Truths. No more spin. No more spin doctor.

If you once forfeit the confidence of your fellow citizens, you can never regain their respect and esteem. It is true that you can fool all the people some of the time; you can even fool some of the people all the time; but you can't fool all the people all the time.
Abraham Lincoln

So you have no ideas about effective PR activities?

Cort · Dec 7, 2010

OverTheHills said:
Parvo,

Thankyou for your very thoughtful and analytic posts. I have no time now to do more than applaud and re-inforce one small point.

A mature, thinking organisation takes complaint/critique from its customers (not its competitors) as an opportunity for reflection and improvement. Parvo points out how many patients are dissatisfied & angry with CAA, I would suggest many more patients see them as irrelevant & ineffectual. They are losing market share.

Like every other sphere of life the internet is having a profound effect with patients, disabled as we are, now able to communicate, organise and act at grassroots level much better than before. Think of the changes to the music industry, to the media, the impact of Wikileaks on governments.

If the CAA wishes to retain even its current place in the ME landscape they need to refocus, become more effective, more accountable and more transparent. Same old same old will work for neither patients nor CAA.

OTH

I agree with you. I think the CAA desperately needs to be more transparent. They need to communicate more. They need to be less top-down and they need to be more effective with advocacy....they actually take quite a few chances in the research area but they are conservative advocates and I think we need more. OBviously they need to be more in touch with the online patient community....I think they've written them (us) (except for me

) off. Except for Jennie there's little attempt to engage. I think that has cost them dearly - I think that's been a huge mistake. They have a huge PR problem

....

On the other hand, as I keep trying to point out - they actually also do alot of good work. They are trying to turbocharge the research field. They are basically trying to do what our professional research organization the IACFS/ME should have been doing for years.

It's crazy to pretend that stuff like that is not occurring. Its detrimental to our own interests to throw that away. That is precious stuff....and we ignore it at our own peril I believe.

Valb626 · Dec 8, 2010

More!

This is an excellent debate. Parvo, your arguments are devastating. Cort, your replies aren't. Step back and think further. You can do it. We've seen you do it. Breathe and think more, then reply.

Cort · Dec 8, 2010

Valb626 said:
This is an excellent debate. Parvo, your arguments are devastating. Cort, your replies aren't. Step back and think further. You can do it. We've seen you do it. Breathe and think more, then reply.

Its impossible for me to know what is not working unless you actually point out points that are not....

Cort · Dec 8, 2010

I'd like to emphasize that I do NOT for a moment advocate the grouping of all types of fatigue into "subsets", because this simplistically implies that there is an overarching "set" that unifies all types of fatigue. The whole problem with CFS has been that practitioners have dictated the science, rather than following it. I believe the science will show that we are dealing with drastically different, discrete, and unique medical entities, and in order to do justice to this disparity, indeed the dichotomous needs, we need to SPLIT advocacy/research responsibility for these groups. While there will always be a need to stratify patients with the same diagnosis according to severity, it is this subset mentality that connotes that drastically different kinds of "fatigue" all fit under some kind of medically logical umbrella. This subset mindset has resulted in decades of confusion, muddied cohorts, and advocacy strategy that is at cross-purposes - within the various interests currently represented by the CAA. But it does benefit those who somehow benefit from a larger market share.

Does this even make sense? You don't suggest determining subsets is a good thing because that means they are all part of one set???? You do realize that everyone is lumped under the CFS set right now? And you do realize that finding subsets basically means finding different discrete entities? Finding a 'subset' in what is now called CFS - means breaking the disorder apart - you don't want that?

The 'subset mentality'????....You do realize that the problem is that there are NO subsets in CFS at the moment. How can you have a 'subset mentality' if you don't have any subsets? THERE ARE NO SUBSETS IN CFS.....Virtually every researcher I know of would love to find subsets...because then you would have discrete types of patients that they can study without the 'other types' of patients confounding their results....But you are worried about a 'subset mentality'. Would rather have the Oxford or Empirical definition - that's no subsets....I am confused by this......

While there will always be a need to stratify patients with the same diagnosis according to severity, it is this subset mentality that connotes that drastically different kinds of "fatigue" all fit under some kind of medically logical umbrella. This subset mindset has resulted in decades of confusion, muddied cohorts, and advocacy strategy that is at cross-purposes - within the various interests currently represented by the CAA. T

It all comes down to research. Until you can prove subsets with research studies everything else is just talk! You'll never get someone to study a 'subset' until they can prove it exists. Because no one has done that - that paragraph really doesn't make sense. Are you saying advocate for ME vs CFS patients? Fine...define ME patients in a way they can be split off from the CFS patients. Nobody has been able to do that. You are years ahead of the ball game...OR do you want to split off gradual onset from infectious onset? We know that doesn't work with XMRV - both types have it. Are you saying people with depression and CFS should be split off from people who have CFS and are not depressed? You are drawing lines where none can be drawn yet. That's why we need to identify subsets! YOu say practitioners are not following the science but there is no science showing verifiable subsets and until there is its all just going to be 'CFS'.

Im going to challenge you on this Cort: HOW does lumping retroviral ME/CFS together with psychogenic depression under one advocacy organizations roof benefit the patient? Give me 5 good reasons.

Who said you should lump retroviral ME/CFS with psychogenic depression together. How did psychogenic depression get into an argument about CFS?

I feel like I say one thing and it gets translated into something else. I simply said that I thought that, given that the CAA is the only game in the US at this time and given that they involved in XMRV on the federal and other levels, that even if the disorder gets split up the CAA would probably survive and probably advocate for people with XMRV. I didn't say it was the best or most efficient thing to do....

Cort, you commented that the CAA is viable. Whether they are viable is irrelevant, and I might add is not a particularly inspiring measure of success.

Here we go again - can you please refer to what I said? I said that given that the CAA is viable and has maintained itself at a certain level that the Board of Directors is not likely to get rid of Kim McCleary. And no, viability is not irrelevant - its very relevant to any organization to be able to maintain itself over time. I certainly did not say it was an inspiring measure of success but it is a measure of some success particularly with an organization that is entirely funded from donations.

parvofighter · Dec 8, 2010

Think Wessely, Reeves

Cort said:
Who said you should lump retroviral ME/CFS with psychogenic depression together. How did psychogenic depression get into an argument about CFS?

Those are excellent questions Cort. Let me see. Right, that would be the entire sordid history of "CFS" that has lumped ME/CFS together with psychogenic depression. That would be the NICE Guidelines. The CDC. That would be the watered down criteria... Reeves, Oxford... that routinely lump in psychogenic depression with typically the milder cases of neuro-immune ME/CFS (the severe cases are too ill and self-select out of these CBT/GET factories. That would be Wessely and Reeves who couldn't spot a neuro-immune patient if they died on their doorstep. And that would be the CAA - by virtue of their current, archaic and nonsensical strategy, which has them supposedly advocating for depressed/sedentary CFS patients, alongside ME/CFS neuro-immune XMRV patients, alongside idiopathic fatigue patients. And that would be the CAA, whose silence on XMRV research such as the van Kuppeveld BMJ study, which by virtue of its lax cohorts, lumped retroviral ME/CFS together with psychogenic depression - and pawned it off on the hapless media as a "well defined" neuro-immune cohort.

Cort, I agree. You can do far better than this. You're metaphorically flailing your arms. If you really care about the course of the CAA, consider that constructive feedback is desperately needed, and you are resisting it like it's the plague. Be still. Listen. Absorb. I and others are taking the time to give it. But I am NOT interested in refuting knee-jerk arguments that neither make strategic or logical sense, nor address what the CAA could BUILD to be more relevant to patients' urgent needs.

What does it say about your insight into the dire challenges of ME/CFS and of the CAA if you ask,

Cort said:
Who said you should lump retroviral ME/CFS with psychogenic depression together. How did psychogenic depression get into an argument about CFS?

That's the whole problem: the entire sordid history of what patients have been fighting against - the sloppy lumping together of neuro-immune patients with psychogenic depression!

Plus, you still haven't answered my earlier question:

parvofighter said:
<link rel="File-List" href="file:///E:%5CDOCUME%7E1%5CDANIEL%7E1%5CLOCALS%7E1%5CTemp%5Cmsohtml1%5C01%5Cclip_filelist.xml"><o:smarttagtype namespaceuri="urn:schemas-microsoft-comffice:smarttags" name="PersonName"></o:smarttagtype>Im going to challenge you on this Cort: HOW does lumping retroviral ME/CFS together with psychogenic depression under one advocacy organizations roof benefit the patient? Give me 5 good reasons.<style>  </style>

Please get some sleep before embarrassing yourself any further. I agree. I've seen you be lucid. This is not one of those times. I think I've done all I can do in this discussion.

citybug · Dec 8, 2010

Going back a few pages... I wanted to go to lobby day for the first time, but I was too sick. I wanted to demonstrate there. I loved the Act Now signs, but why didn't anyone go outside? Lie on the sidewalk, speak to some people, not stay in the proper channels? It doesn't take 500 people to start, it takes stepping out. That was a baby step.
Dr. Mikovits has stood behind the science and pushed for the truth, and created great papers and experiments no matter who ran the first test, and I would like to give credit to that grad student.
Subsets might be the strains of virus, and Kerr's genetic groups that handle it different ways. Not having enough money for WPI to follow every path is ridiculous.

Frickly · Dec 8, 2010

My goodness parvofighter.....I would have just said that the CAA seems to be totally out of touch with what the patient community they are serving wants and needs.....but I will buy your argument as well.