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

[starryeyes]

So where's our support group that should be hollering about how underfunded CFS is?

 

[MEKoan]

Jenny,

Please ask us questions about why we feel this way! You are the link between the old way and the future... take up the mantle, we will support you.

peace out,
Koan

 

[justinreilly]

[[quoting justinreilly as:
[The public awareness campaign] was just another excuse to waste money ]]

The awareness campaign generated hundreds and hundreds of stories in national and local print, television, radio, online and wire stories between 2006 and 2009. The photography exhibit appeared in 36 public locations, 9 medical professional conferences, and generated coverage in the top 25 media markets in the US. The tv and radio PSAs generated over one million impressions. There are hundreds of thousands of people who heard about CFS who otherwise would have heard nothing.

I thought the public awareness campaign was good. I was talking (post #503) about the Faces of CFS exhibit which I think was largely a waste of money.

Posted by justinreilly:
Of course they don't support a name change.

Posted by jspotila:
Please read the Association's statement on the name change.

This was a good statement that the govt needs to spend more money on research and that the name is no good. The statement says that it urges CFSAC to reconsider a name change as new research comes down the pike. It doesn't say there should be a name change then (at time of writing- 2003) or now (since it is still the position of CAA I assume as you are directing me to it). There needs to be a name change now (to ME or ME/CFIDS) and the only way this will happen is if CAA leads by calling the disease ME or ME/CFIDS. I think this sort of thing is elementary and CAA should do the basic things first before spending time and effort on anything else.

 

[Robin]

So where's our support group that should be hollering about how underfunded CFS is?

Um, they actually do spend a lot of time lobbying for $ from Congress. Before they got into research, the CAA was primarily an advocacy organization.

I understand the ire here, and the CBT/GET stuff pisses me off too. But this is different stuff. But the CAA is really small potatoes as far as patient organizations go. They just don't have the money that the super-powerful health and special interest lobbying organizations do. If you go to www.charitynavigator.org and type in various illlnesses, you'll see that many have several patient organizations, and some have serious cash. The American Diabetes Association has a $225 million budget, for example.

A friend of mine is a former policy analyst with HHS and now works in non profit, and would never work for a place like the CAA that is so shoestring. You have to have a good budget to get the kind of lobby to get big $$ in Congress, and the CAA simply doesn't have the funding base to really do the kind of things we'd want them to.

 

[MEKoan]

But the CAA is really small potatoes as far as patient organizations go. They just don't have the money that the super-powerful health and special interest lobbying organizations do. If you go to www.charitynavigator.org and type in various illlnesses, you'll see that many have several patient organizations, and some have serious cash. The American Diabetes Association has a $225 million budget, for example.

A friend of mine is a former policy analyst with HHS and now works in non profit, and would never work for a place like the CAA that is so shoestring. You have to have a good budget to get the kind of lobby to get big $$ in Congress, and the CAA simply doesn't have the funding base to really do the kind of things we'd want them to.

My entire career, as someone responsible for crafting a message for a global NFP entity, was in the NFP realm. Everything I did that mattered was as an NFP minion of an enormous, global, NFP organization. One of the things that we sucked up, right from the get go, was that we would not be paid anything remotely familiar to the for profit world. That was ok with me and those I hired.

If you get to fight the good fight, you suck up the salary.

We got that.

Just saying.

 

[Robin]

One of the things that we sucked up, right from the get go, was that we would not be paid anything remotely familiar to the for profit world. That was ok with me and those I hired.

If you get to fight the good fight, you suck up the salary.

My friend was saying, it's not the money you make, because it's always less compared to what you make in the private sector or even for the government. It's the size and reliability of the funding base, and how much you can do with the cash you have. If you don't have a good solid funding base you really can't do much. That's all I wanted to point out.

 

[MEKoan]

Hey Robin,

We were working for an org with a huge and devoted funding base, I agree. You make a very good point. The org for which I worked had absolutely no question that their donations were well spent and that none of us were over-paid.

They had, over time, built enormous trust.

CAA can do that.

It takes time.

Peace,
Koan

 

[Mithriel]

This isn't aimed at any one, especially not the CAA, but I think it is of the greatest importance so must be said.

But the more important point is-and Justin I'm just speaking in general, now, I'm not trying to pick on you. This comes up a lot-we just shouldn't compare people to Nazis. I don't care how much they haven't fulfilled our standards of behavior. Did they contribute to the death of millions and attempt complete genocide? No? Then not Nazis. It's an unfortunate kneejerk response that's become okay somehow. And it's such an offensive thing to say to someone. But it also invalidates your argument. You (one) then become someone speaking and thinking in hyperbole and then what you're saying becomes easier to discount.

The Nazis were just like us. Apart from maybe a few of the inner circle, no one in Germany woke up one morning and decided to kill millions of people. What happened was that little steps were taken and attitudes were allowed which lead to the death camps. Individuals put their own profit first, very few people looked at the big picture. The Nazi party got into power because they offered people jobs and self respect. You had to be a member of the party to get on in life.

As far as getting rid of the unfit, the medical profession were part of that from the start. (Eugenics was very popular in the US and UK too) The killing began with the sick and disabled, "lives not worth living". A recent article about all this said that by seeing the Nazis as some sort of aberration we risk it happening again. They are now seen as something between an isolated black mark on humanity and a joke not to be taken seriously, when they were actually an extreme of the things that happen in politics all the time.

They used propaganda to demonise sections of society. They were continually portrayed in a negative light in literature and the media and made out to be the cause of economic ills. The parallels with the way ME and CFS have been treated is chilling. We are not seen as being as deserving as other illnesses.

The situation in the UK, with the rise of the biopsychosocial view hand in hand with the insurance companies, is frightening in the implications of some of their statements which look benign at first glance. "People in work have better health and higher life expectancy than those on benefits" Their answer - stop benefits and force people to work or die. This is presented as a kindness.

The givens of society are changing and the case of ME/CFS is the canary.

We have to LOOK for parallels with what happened in Germany and similar disasters of history because it is the only way we will avoid taking a path which leads us where we never wanted to go. If anyone thinks they see it happening they should say it loudly and clearly so we have a chance to check if they are right and maybe avoid disaster.

Mithriel

 

[Gerwyn]

Um, they actually do spend a lot of time lobbying for $ from Congress. Before they got into research, the CAA was primarily an advocacy organization.

I understand the ire here, and the CBT/GET stuff pisses me off too. But this is different stuff. But the CAA is really small potatoes as far as patient organizations go. They just don't have the money that the super-powerful health and special interest lobbying organizations do. If you go to www.charitynavigator.org and type in various illlnesses, you'll see that many have several patient organizations, and some have serious cash. The American Diabetes Association has a $225 million budget, for example.

A friend of mine is a former policy analyst with HHS and now works in non profit, and would never work for a place like the CAA that is so shoestring. You have to have a good budget to get the kind of lobby to get big $$ in Congress, and the CAA simply doesn't have the funding base to really do the kind of things we'd want them to.

There does not to be huge amounts of money spent change the name you use use that name repeatedly and often and that alone over time will change public perception . Basic communication skills.Critically evaluating research before propagating does not take much money either.Just do the basics well first.If the foundations are not right the building falls down.

 

[valia]

There does not to be huge amounts of money spent change the name you use use that name repeatedly and often and that alone over time will change public perception . Basic communication skills.Critically evaluating research before propagating does not take much money either.Just do the basics well first.If the foundations are not right the building falls down.

I suggested the same thing a while back, used often enough it would soon become accepted practice, look how Yuppie Flu caught on.

Charles Shepherd and the MEA are doing it now using "Myalgic Encephalopathy" (in place of Myalgic Encephalomyelitis) I am not aware of any money being spent on this change and it doesn't seem to worry them that there is no such condition as "Myalgic Encephalopathy"

 

[Dolphin]

The saddest thing to me (and for ALL the patients and for ALL the Advocates) is that we DON't have a better understanding of the Pathophysiology of our illness...........in seven years times.

Why?



j

Not that much research was done.

What the CDC did in that time was largely meaningless as it involved patients diagnosed using the empiric definition (most of whom wouldn’t get a diagnosis of CFS in other situations judging by the numbers).

Not much drive to do it around the world e.g. it’s widely reported that Graded Exercise Therapy (GET) and CBT based on GET are the answer (or close to it).

Not that much money raised by patient organisations around the world.

etc

 

[Dolphin]

It seems to me that there are distinct echoes with your CAA in the US and what happened over here in the UK with Action For ME (AfME). Please heed the warnings and don't let the same happen to you because AfME have been an absolute unmitigated disaster for people with ME in the UK. I see similar things going on that happened over here. The drip drip drip of pscyh propaganda will get louder and louder. You just watch. Better still, don't watch, take action, don't let it happen. Change them or destroy them before it's too late.

I think the CAA is a much better organisation than either the AfME and AYME and my impression is that it has been improving rather than disimproving on some issues in the last year or two.

 

[oerganix]

CFS research:funds in proportion to the size of the problem (Our marketing slogan?)

Because the US government is not investing in CFS research in proportion to the size of the problem.

Yes, that about covers it.

And that is why we want our 'advocate organization' to do something about that. That is our only hope, in the long run. And I hope you can understand our loyalty to and our invested hopes in what WPI has done. They came up against the boulder in the stream and they went around it. They are unambiguously trying to find that cause and cure, without any effort, money or power wasted on psychologizing or "coping". We want CAA to boldly go where they haven't gone lately (de Freitas notwithstanding - that episode of (y)our history should not shape the present)....take that chance....don't damn with faint praise or give ammunition to the European studies that anyone following the politics of ME/CFS should have expected to pop up. Dr Vernon started out well with her response to the first UK study and then.....waffled on the next two studies.

These were missed opportunities to tell it like it is. Instead she gave us muddy water and smoke, all the better to screen those phony studies from the expert eyes she could have applied to them. It seemed like a repeat of her just going along with Reeves at CDC. If her ties there, past or present, inhibit her from advocating for us, she should step aside.

Those 3 negative studies were in no way on par with WPIs work, backed up by NCI and the Cleveland Clinic, and this should have been pounced on for the propaganda efforts they were. Instead, it was left to WPI to answer their critics. I would really have liked to see CAA stand up for WPI instead of piling on. From my perspective, CAA and WPI should be part of the same team, not competitors. You can always include disclaimers such as "at this time it seems...". You don't have to declare that WPI has found "IT".

I would reaffirm my loyalty to CAA, which received a lot in donations from me in the past, IF:

1) I never see another word on "coping" or anything that is not in search of a cure or treatment. And please, no waffling that GET/CBT is "treatment". Anything with the smell of psychology gives ammunition to the psych lobby and we need to be oversensitive to that, for now.

2) CAA mounts a gigantic campaign, perhaps with one (or a series) of those online petitions to be signed and sent to the appropriate government figures, demanding financing "in proportion to the size of the problem". (That is an excellent phrase...thank you!) You might start emphasizing the size of the problem by featuring a 'dirty dozen' of the approximately 5000 studies out there that show some aspect of the biology of the problem in each issue of the newsletter. Maybe 3 or 4 studies from each of the, at least, 3 decades of research showing some aspect of the biology.

3) Campaign for the Canadian Criteria to be used both in research and diagnosis. We really need Dr Vernon to come out against the malignant roots of disinformation and misinformation of Reeves/CD and all the harm he has done us since he took power, with the help of CAA. Neutality on the CDC will not do.

If you can back away from support of Dr deFreitas, you can back away from support of the CDC fiasco, without losing your credibility. You can always say "it seemed like the right idea at the time, but now we have more information that disproves those ideas" or something to that effect. Then get busy listing those studies that disprove the psych lobby's pet theories. With the new DSM coming out, this is extremely important.

 

[justinreilly]

Beautifully said, Mithriel

The Nazis were just like us. Apart from maybe a few of the inner circle, no one in Germany woke up one morning and decided to kill millions of people. What happened was that little steps were taken and attitudes were allowed which lead to the death camps. Individuals put their own profit first, very few people looked at the big picture. The Nazi party got into power because they offered people jobs and self respect. You had to be a member of the party to get on in life.

As far as getting rid of the unfit, the medical profession were part of that from the start. (Eugenics was very popular in the US and UK too) The killing began with the sick and disabled, "lives not worth living". A recent article about all this said that by seeing the Nazis as some sort of aberration we risk it happening again. They are now seen as something between an isolated black mark on humanity and a joke not to be taken seriously, when they were actually an extreme of the things that happen in politics all the time.

They used propaganda to demonise sections of society. They were continually portrayed in a negative light in literature and the media and made out to be the cause of economic ills. The parallels with the way ME and CFS have been treated is chilling. We are not seen as being as deserving as other illnesses.

The situation in the UK, with the rise of the biopsychosocial view hand in hand with the insurance companies, is frightening in the implications of some of their statements which look benign at first glance. "People in work have better health and higher life expectancy than those on benefits" Their answer - stop benefits and force people to work or die. This is presented as a kindness.

The givens of society are changing and the case of ME/CFS is the canary.

We have to LOOK for parallels with what happened in Germany and similar disasters of history because it is the only way we will avoid taking a path which leads us where we never wanted to go. If anyone thinks they see it happening they should say it loudly and clearly so we have a chance to check if they are right and maybe avoid disaster.

Mithriel

[Emphasis added]

Wow, Mithriel, this is obviously way more eloquent a treatment of what i tried to convey in a ham handed way.

Hitler was democratically elected. These type of things can happen again in more minor guises. Sharpe or White referred to us as the 'undeserving sick.'

My point was meant to be that we all have to take responsibility for what we do. If we are coerced into doing something we know victimizes others then we should resist it or attempt to clearly expose it later and attempt to make amends.

I do not really think that Dr. Vernon is someone who just does what she is 'ordered' to do, but for the sake of argument, if she were, then her current employer should direct her to publicly expose CDC's decades-long campaign against pwME. If Dr. Vernon is not someone who just does what she is 'ordered' to do then she 'co-authored' the Reeves criteria and otherwise furthered CDC's 'CFS' agenda of her own free will. She has to face up to this misdeed by clearly, publicly renouncing CDC's abuse of pwME.

 

[justinreilly]

CAA Needs to Focus on the Basics: Basic #1- Demand Appropriate Federal Funding

2) CAA mounts a gigantic campaign, perhaps with one (or a series) of those online petitions to be signed and sent to the appropriate government figures, demanding financing "in proportion to the size of the problem". (That is an excellent phrase...thank you!) You might start emphasizing the size of the problem by featuring a 'dirty dozen' of the approximately 5000 studies out there that show some aspect of the biology of the problem in each issue of the newsletter. Maybe 3 or 4 studies from each of the, at least, 3 decades of research showing some aspect of the biology.

The funding problem is so glaring. CAA may not have the funds for a truly 'gigantic campaign', but within its limited budget the redress of the funding problem should be proportionately gigantic. For a start, put it as the first item on the front page with a link to the advocacy page email writing 'wizard' to send a letter to your members of congress.
We don't have a lot of money, but we can do the basics.

 

[Roy S]

Jennie,

Do you or the rest of the CAA think that criticism of the CAA is dangerous?


I'm thinking of something in #508 that Cort wrote.

 

[jspotila]

Jennie,

Do you or the rest of the CAA think that criticism of the CAA is dangerous?


I'm thinking of something in #508 that Cort wrote.

Roy, I am afraid I do not see the connection between Justin's post at #508, Cort's statement quoted by Justin, and your question. Having said that, I do not believe that constructive criticism is ever dangerous.

 

[jspotila]

I must speak plainly. If I didn't know any better, the conclusion I would draw from oerganix's post (#541) and Justin's post (#543) is that the Association has not been advocating for federal research investment dollars in proportion to the devastation caused by CFS. I would be wrong in drawing that conclusion.

The CFIDS Association has been the only organization to invest money in paid professional help in reaching members of Congress and agency employees. I might add that we receive almost $0 per year in contributions restricted to public policy work, so paying those professionals comes out of our unrestricted fund. One could draw the conclusion from those numbers that people do not support our doing such public policy work, but we do not draw that conclusion. We know that banging on doors in Capitol Hill office buildings is the only way of securing meaningful federal investment in CFS research.

The suggestion that the Association has not been doing the lion's share of public policy advocacy is erroneous. We've been doing it for twenty years. We've organized Lobby Day, we send out alerts on the Grassroot Action List and make it easy for individuals to write members of Congress and the media. We've attended every single CFSAC meeting since the committee's first incarnation, and given testimony at most of them.

If anyone wants to help, sign up for our Grassroots Action List. The link is on our home page. Our most recent call for proportional research investment was made during 24 meetings on the Hill at the beginning of March. We are paying for expert help in making a case for CFS research to be included on the list of diseases funded by the Department of Defense medical research program. That's how breast cancer made it into big time research dollars. And Kim McCleary testified at the October 2009 CFSAC meeting calling for - wait for it - federal research investment proportional to the devastation of CFS.

My name is Kim McCleary and Im president & CEO of the CFIDS Association of America. I am grateful for this timely opportunity to address members of the CFS Advisory Committee, the ex-officio agency representatives and the public here and viewing the videocast. I believe I hold the unique distinction of having attended every single meeting of this committee and its predecessors since they were first opened to the public in 1993. This mornings session was the best session of this committee, in my memory. I extend gratitude to Dr. Wanda Jones for inviting Dr. Dan Peterson and Dr. John Coffin to address the committee and the public on the important XMRV research.
A lot has happened since that first open meeting 1993, and at the same time, too little has happened. In fact, a lot has happened since the most recent CFSAC meeting in May, and (again) too little has happened.
Since 1993 a few facts have been documented beyond dispute. CFS is a very real condition and it seriously affects the lives of millions of people worldwide who have it, and people who love those who have it. CFS is complicated. Whether its caused by a retrovirus called XMRV or it is the result of multiple genetic and environmental factors, including one or more agents acting together, it has defied explanation for a quarter of a century.
What we knew in 1993 and what we know today is that we need more research. We need better medical care. We need more people especially doctors to understand and to care about CFS.
But what has stumped this panel of CFS experts and all of us who have taken part as advocates over the years is how to mobilize our federal resources to accomplish those things. There is now the scientific momentum to fuel mobilization.
Notably, the National Institutes of Health has participated in the XMRV research through the National Cancer Institutes intramural program and the National Institute of Allergy and Infectious Diseases recent grant to the Whittemore Peterson Institute to support expanded research on XMRV. NCI director Dr. John Niederhuber has reiterated his institutes support of continued research on this topic to understand the relationship of XMRV to human disease, including CFS and prostate cancer. He also provided very helpful interim guidelines, at the Associations request, to help patients, family members and the public while this research expands.
In addition, the NIHs Office of Research on Womens Health collaborated with the CFIDS Association to host a meeting of funded investigators last month at Cold Spring Harbor Laboratorys Banbury Center, with the outcome of unparalleled consensus that a formal research network linking CFS investigators would propel the field through enhanced communication, establishment of best practices and implementation of standardized operating procedures for CFS studies. The XMRV research, and many of the issues discussed after the lunch break, could be immediately enhanced if this network existed. We are moving forward to implement recommendations arising from the Banbury conference to create this network. In the meantime, the CFIDS Association, like the WPI, is helping to coordinate with researchers in the U.S. and abroad who have genuine interest in replicating XMRV research.
In spite of this very recent progress, NIH funding for CFS is at the same level it was in 1993. There are many avenues of scientific investigation worthy of NIH support, and it is important not to lose sight of the many body systems affected by CFS that warrant continued study. We urge the CFSAC to recommend that NIH immediately issue an RFA to capitalize on increased interest in CFS research arising from the XMRV publication and the promise of a formal research network.
Six months ago when this committee met, the CDC presented a draft five-year strategic plan. The agency reports having received almost 1,200 items of correspondence about its draft by July 30. The final version distributed today incorporates some welcome additions, including recognition that the empiric criteria should be re-evaluated as the foundation for CDCs research. However, the repetitive emphasis on psychosocial features, risk-conferring behaviors and chronic unwellness reflects a disregard for and/or dismissal of the major criticisms of the draft plan loudly and plainly echoed by organizations and individuals at public meetings held in April, May and in written correspondence. I am reminded of the first public ICC meeting in 1993, held in Atlanta, at which federal agencies threatened to define CFS out of existence by eliminating the 11 symptom criteria and focusing solely on chronic fatigue. Now, this CDC plan imposes a similar death sentence. We implore the CFSAC to aggressively challenge this plan to protect hard-earned progress of the past 16 years and not waste $25 million that should fuel important research.
In conclusion, the federal resources being applied to CFS must catch up with the magnitude of this condition, and must at least match the proportion of private investments. The momentum is building, and the time is now to solve CFS.
K. Kimberly McCleary President & CEO

Regarding Dr. Vernon acting as whistle blower, I can see why that idea has appeal. But what is the best use of Dr. Vernon's time and the Association's resources: build the first national CFS Biobank available to researchers doing CFS research? or hold the Banbury meeting that brings researchers together for a weekend of intense information sharing and collaboration? or expand the first ever CFS research network? or monitor the six grants funded by the Association? or facilitate connections between researchers and clinicians with well-characterized and appropriately diagnosed CFS patients (no, she is not promoting the Oxford criteria)? or shopping around some kind of story about CDC to journalists who aren't interested?

 

[Otis]

Some kind of story indeed!!!

<snip>

Regarding Dr. Vernon acting as whistle blower, I can see why that idea has appeal. But what is the best use of Dr. Vernon's time and the Association's resources: build the first national CFS Biobank available to researchers doing CFS research? or hold the Banbury meeting that brings researchers together for a weekend of intense information sharing and collaboration? or expand the first ever CFS research network? or monitor the six grants funded by the Association? or facilitate connections between researchers and clinicians with well-characterized and appropriately diagnosed CFS patients (no, she is not promoting the Oxford criteria)? or shopping around some kind of story about CDC to journalists who aren't interested?

Jenny,

I respect the balanced nature of your responses, but I must challenge your last reply.

This IS some kind of story. While I believe that all of the things you site are important, how much time would it REALLY take to write down Dr. Vernon's view of events at the CDC?

Furthermore, if the journalists don't care shouldn't it be the role of an advocacy organization to MAKE them care. That's not good enough. They want to sell papers. Give them a good story and they'll get interested.

To quote Kim McCleary "NIH funding for CFS is at the same level it was in 1993". While Dr. Vernon is doing good science on a small budget how is that helping all the other problems Kim cited? With the current approach we'll be having the same conversation in another 17 years regardless of how much science the CAA does or doesn't do. But how many more will have we lost by then? How much more marginalized will we be?

Somebody has to SHAKE THINGS UP, BIGTIME. Help us, please. Silence serves no purpose. We need the leverage of media attention.

What make more of an impression on a government official:
1) Excuse me, can you spare a dime for a good cause
2) What did you know about this scandel and what are you doing to do about it?

History provides the answer over and over.

Either Dr. Vernon was intentionally part of the harm that was done to us or she wishes to ignore that chapter of her life because she didn't see what was happening and wants to now be part of the solution. At what cost? This chapter of my life and many, many others has gone on long enough.

Speak the truth Dr. V. We'll forgive but right now we cannot forget.

Otis

 

[anne]

Hmmm. I wonder if the CAA underestimated the anger some very aware patients feel toward the CDC, and the CAA for ever working with them. Even recently, when the CAA gave up on trying to work within the system and began to speak out against it, they maybe didn't foresee how angry these patients were and how betrayed they felt and continue to feel by things like the CDC partnership. Perhaps whatever reckoning that caused the CAA's about-face needed to happen externally instead of internally--that is, something the community saw. Actions are supposed to speak louder than words, but maybe some words would have helped, some explanation of how the CAA went from partnering with Reeves on an awareness campaign, one that drew patients' and physicians' attention to some very bad information on the CDC website, to agitating for his removal.

And obviously no one anticipated how it would look to these patients for the CAA to take on a doctor whose name is on Reeves' studies. Maybe the what and the why needs to be told. Now, I'm not sure it's fair to expect Dr. Vernon to speak too much of her former place of employment. It does no good if she destroys her professional reputation--her use is best to us as a scientist, and if she's seen as discredited by the scientific community than that advantage is gone. But is there some way to address these concerns?

It just seems like there are roots to this level of anger--the CAA seems like they were following a deliberate political strategy, but it's one that really upset people and continues to, and without somehow engaging these people in the strategy and the change, they've just left them to seethe. And Dr. Vernon's role at the CDC and her defection to the CAA maybe needs to be dealt with openly, somehow.