the "new and improved" CAA (CFIDS Association of America)

[leelaplay]

I'm impressed by the rapid changes the CAA has made to modernize their image, to represent our interests and to communicate better. The newsletter I got today looks nothing like, and the content is nothing like, the ones I deleted after skimming for seconds 6 months ago.

A lot of what we've been asking for is here now ( see You Matter for an oblique reference to the forum).

Love that they're getting Dr. Lucinda Bateman to conduct webinars -starting Jan 18 10. Should be a good re-primer for the Mikovits live-stream on pro-health on Jan 22 10!

There's a good xmrv page.

And from discussions with Khaylay and the forum, a FAQ page and a month to month list of what they do.

Here's some of the newsletter:

From the CEO's Desk

In 2009, CFS commanded the world's attention with the landmark research published in the prestigious journal Science. Many other important events and milestones were marked in the past year, too. Here's a month-by-month recap of some of the CFIDS Association's contributions to the movement from 2009.

For the fifth time in the Association's 22-year history, a new chairman will lead the Board of Directors beginning this month. In "Passing the Torch," outgoing chairman Jennie Spotila, J.D. and incoming chairman Adam Lesser share their thoughts about what motivates them as volunteer leaders.


Research Matters

A study testing for evidence of XMRV infection in CFS patients in the United Kingdom has reported negative results. This is the first publication following the article in the top-ranked journal Science from Whittemore Peterson Institute, the National Cancer Institute and Cleveland Clinic that garnered worldwide attention. Here is Suzanne D. Vernon, PhD's analysis of how it compares to the Science paper, and why it heavily underscores the need for more research. The Association's press release was distributed today to news outlets.

Several very different infectious agents have been shown to result in persistent CFS-like illness in a subset of those who become acutely ill. In this article, scientific director Suzanne D. Vernon, PhD, reviews recent literature on "Precipitating Pathogens."

Every quarter the six research groups funded by the CFIDS Association must submit written progress reports to our scientific director. Here are recent updates from each of the research groups you helped us support for 2009-2010.

To help bring information about current research topics to you, we're introducing a series of online webinars. Dr. Lucinda Bateman will explain XMRV and its significance in our first webinar on January 18, 2010. Watch your inbox for more program details and sign-up information.

Two groups in the U.K. have announced joint funding for a replication study and Cornell University has advertised a new research position for an XMRV/CFS study. We regularly update our XMRV page with reports and resources as they are published. Check it frequently.

Advocacy Counts

Write to Secretary of Health Kathleen Sebelius and elected officials to request action on the CFS Advisory Committee's latest set of recommendations and the urgency of expanded research. We've made it easy for you with letter templates at our Grassroots Action Center.

One of our advocacy initiatives for 2010 will be to seek inclusion of CFS in the Congressionally Directed Medical Research Program (CDMRP) funded by the Department of Defense. To be successful, we'll need to demonstrate the impact of CFS on the warfighter. Read more about the CDMRP and email us at advocacy@cfids.org if you are a current or retired member of the military whose CFS impacted your military service.

You Matter

With the intense interest in XMRV and related developments, several new online discussion forums have been created and participation in existing ones has grown. Within our existing resources, we try to keep up with the rich, informative dialogue. In response to questions posed on our Facebook page, in discussion forums and through e-mail, postal mail and phone calls, we've posted an Association FAQ page; we'll update it regularly to reflect the dynamic community dialogue.

and more..................................


Join 2,956 Facebook fans for information and support

Not a CFIDSLink subscriber? It's free.

www.cfids.org | The CFIDS Association of America | PO Box 220398 | Charlotte | NC | 28222

 

[muffin]

Maybe Hillary Johnson's negative comments about CAA helped them "see the light" - as it were. I will withhold judgment until I see more.
Why hasn't the CAA thought about or make motions to bring some sort of a legal suit against the CDC and/or William Reeves? It is difficult to sue the Federal government but it can be done. It is much easier to sue an individual within the government but you obviously must have your cards lined up correctly. I do believe that the CAA should have done something in this area years ago.

Thoughts?

 

[Advocate]

I'm impressed by the rapid changes the CAA has made to modernize their image, to represent our interests and to communicate better.

I checked it out, and I'm impressed, too.

 

[jspotila]

Why hasn't the CAA thought about or make motions to bring some sort of a legal suit against the CDC and/or William Reeves?

I was a litigator before I became ill. I can't think of what cause of action (in the legal sense) could be brought against CDC and/or Reeves. If you punch me in the face, I can sue you for damages. If police officers beat me, I can sue the police department and city for violation of my civil rights. Causes of action against the federal government are very limited, for obvious policy reasons - every citizen in this country has something they would love to sue the federal government for. So while there is no doubt that PWCs have been harmed by CDC's inaction, indecision, etc., I really don't know if there is a LEGAL reason that could form the basis of a lawsuit.

To further complicate the matter is the extraordinary cost of litigation. Yes, some cases are taken up pro bono - for example, a former classmate of mine was involved in the Dover school board lawsuit over teaching intelligent design in public schools. But that is very rare because of the unbelievable costs and no guarantee of ever recovering attorney's fees.

 

[jspotila]

Oh, thanks to islandfinn and Advocate for the props on the newsletter. The CFIDS Link format (nuts and bolts) is the same, but the staff worked very hard on the content in this fast-changing environment.

 

[Dolphin]

I'm impressed by the rapid changes the CAA has made to modernize their image, to represent our interests and to communicate better.

I checked it out, and I'm impressed, too.

I was impressed also by the CFIDSlink. Lots in it. They had a busy year last year.

 

[Anika]

Thanks to jspotila for sharing your insights and experience, both from your CAA experience and experience as a litigator.

I've been dues paying / contributor for several years and have always found a benefit. As patients, we have a lot in common but a lot of variability in symptoms and extent of disability, etc., as well as some differences in medical issues. And it's even harder when you realize that most of us can appear normal to the casual eye for a short time, and people who don't live with us aren't likely to understand the true nature of our challenges, since they see us for short times usually in our betterm moments. I still have a hard time explaining it, so I just avoid doing it. I think these factors make it challenging or impossible for any organization, doctor, etc., to make all of us happy, all of the time, even when they're having a good day. I think the CAA folks really try, and often do a good to excellent job.

The changes I've noticed in the CAA mission and focus in the last couple of years, I have liked. I think it was a great stroke to get Dr Vernon on board and really overhaul the research focus. I think she / CAA are trying to set an example that we can only wish could be followed with more resources by NIH.

 

[jspotila]

The changes I've noticed in the CAA mission and focus in the last couple of years, I have liked. I think it was a great stroke to get Dr Vernon on board and really overhaul the research focus. I think she / CAA are trying to set an example that we can only wish could be followed with more resources by NIH.

Dr. Vernon is AMAZING! The Board loves talking with her because she is always on fire about what needs to be done research-wise. The Association is pursuing NIH and DOD funding, and will continue to do so!

 

[fresh_eyes]

The Association is pursuing NIH and DOD funding, and will continue to do so!

That's great, jspot. Would that be the DOD/Gulf War Illness funding Nancy Klimas mentioned in her talk?

 

[usedtobeperkytina]

Could be that CAA thinks their resources are better used in doing their own research and massaging the government agencies into better behavior.

But, since Hillary said she is taking some time off from CFS advocacy for other projects, I do think someone needs to be the public crier for us, someone to challenge and expose. I don't know if there is any legal action that can be taken. And a lawsuit would do what for us? Validate us? Get people in trouble? How does that help us get better?

Maybe the focus should be on news media to expose and then congressional investigation. But we may have to wait for the validation of XMRV, and then we (patients not in any formal organization) can get this done, media campaign and letters to congressmen.

What would a legal action, congressional investigation, etc. do?

Were you thinking class action for all of us that were hurt by the medical negligence (claimed at this point) of CDC?

I can see only two things that could come from something like this, (that is beneficial to us, the sick): exposure which may create more money for research for us in the areas of biological abnormalities. Or possibly get us a lot of money in a class action suit. But even if you could do that (and it is questionable considering it is the government) then it would take years, maybe even a decade or more to resolve the case and lawyers would take much of the money.

And the XMRV study result from WPI led the US government to give money to WPI. What was it, over a million?

While I do think accountability is important in government agencies, I don't know if lawsuit is the best way to do that. Convincing science, media investigations, then congressional investigations may be the way to do that.

Tina

 

[Cort]

I loved that Year end wrap up. They are involved. You can really see how Suzanne Vernon is taking the bull by the horns; she seems to be participating everywhere (in spite of Hillary's statement that CAA and CDC's DNA is now intermingled.) She's obviously a real force.

This is what I'm really hoping for: that Research Network finds a home there.

The BIRN steering committee accepted the Association’s application for an expanded CFS research network to be housed in its technology framework.

 

[Cort]

WPI hasn't gotten anything from the govt for XMRV as far as I know. They did get a nice study funded recently that was pre XMRV. They'll have to put grant requests in and hopefully they'll start to get money for XMRV that way; its hard to imagine that they wouldn't.

 

[Dolphin]

WPI hasn't gotten anything from the govt for XMRV as far as I know. They did get a nice study funded recently that was pre XMRV.

But private money probably helped the last grant. For example, Jonathan Kerr had data from gene expression studies etc which were largely paid for by private money.

And the XMRV study, done by private money, is now releasing lots of Federal/similar money from the blood group(s) as well as researchers in some other countries who are also able to access money to follow it up.

Not criticising you just making the point yet again.

Lots of people I've seen in the 15 years I've been diagnosed look for any and every excuse not to give any of their own money to research. Some people clearly have little money e.g. if you qualify for SSI (is that the means tested one?). But I know plenty of people with ME/CFS who have some money, they could give a little to research (I'd be pleased if it was 1% of what they spent on treatments) but for whatever reason don't. And if they don't, it's likely they are not trying to encourage family and friends to donate and/or fundraise in some way (I've run a national group for nearly 14 years and the two things are often tied (although some people who don't donate themselves do fund-raise). Anyway I think what the CAA is doing with research is great but I hope people will keep giving or start giving to them and/or give to others. Lots of people blame governments etc but individuals with the illness haven't supported the illness/cause as much as they could have themselves over the years. I've been in a fairly unique position as I would generally know who has given something in Ireland (population: 4 million).
<rant/moan over>

 

[usedtobeperkytina]

forgive me, Cort. I thought I saw they got $1.6 million from NIH after the discovery, like right after. Cognitive problems. Maybe I have it mixed up with something else.

Tina

 

[Dolphin]

forgive me, Cort. I thought I saw they got $1.6 million from NIH after the discovery, like right after. Cognitive problems. Maybe I have it mixed up with something else.

Tina

It was put up on the WPI website around 25th September. But perhaps was repeated after the announcement in early October and that might be when many people saw it first.

 

[usedtobeperkytina]

I knew I wasn't imagining it.

And I knew it was real close. I think NIH knew of the pending publication and may have been in the summer meeting. I really think study results will be coming pretty fast. I think the researchers that were in the loop early on, the summer meeting, likely have already finished their research and are waiting publication approval, including more studies from WPI.

But most of these others are likely submitting to publications such as Science, instead of the one that will approve in three days.

And a whole new set of researchers met in November. Remember, Coffin said that sometimes you can take pre-existing research money and use it for this study if you can get a study that fits the criteria of the study money you already have.

So they may publish (some of these 75 that met in November) this spring or summer.

How exciting. I don't dare not check the discussion forums, I might end up missing the next bit of news.

Tina

 

[Dolphin]

And a whole new set of researchers met in November. Remember, Coffin said that sometimes you can take pre-existing research money and use it for this study if you can get a study that fits the criteria of the study money you already have.

Yes, that's the great thing about the XMRV find alright.

 

[jspotila]

That's great, jspot. Would that be the DOD/Gulf War Illness funding Nancy Klimas mentioned in her talk?

I would have to review what Dr. Klimas said again to be sure. The Association is pursuing a couple avenues re: DoD, and I expect more information will be released in the coming months.

 

[jspotila]

I didn't know the CAA lost 5 staff members because of funding lost due to the Madoff scandal! What were those positions for?

Not just the Madoff scandal, although that did impact some of our donors, as did the overall economic situation. I think I saw a stat somewhere that 20 to 30% of non-profits may be forced to shut down by the time it's all over - BUT WE'RE STILL HERE! Trimming our already very lean staff was a measure the Board felt was necessary last year in order to keep the Association viable. We eliminated five positions in development, communications, and project support staff. In September, we hired a Major Gifts Officer to run our development (fundraising) program. I hope we will see other hires this year as well. But tomk is right, the community of people who know and care about CFS is small. We need everyone to donate and spread the word to others about the need for donations.

 

[Cort]

As Tom points out its was really private money that birthed WPI and XMRV and XMRV is the type of thing that small research groups such as the WPI and CAA and MERUK and others are so good at doing. They are uncovering cutting edge research opportunities - giving them the light of day and then getting the big money - the Feds involved.

If it wasn't for the CAA's funding of the repeat exercise studies they might not have existed and I believe they have changed the face of research by making researchers realize that they have to stress patients physically or however before they take their blood. When they stress them - things pop up that wouldn't otherwise - what an fantastic realization that could turn out to be for us all. That could have a huge difference for us - all because one support group supported on small research group!

Of course XMRV - with the incredible response its gotten - proves the point of what we can do with our contributions.