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

[Cort]

There are lots of problems with changing the name; one is that the CDC is in charge of what to call an illness. Once the federal advisory committee for this disease unanimously voted against a name change it got magnitudes of order more difficult to change the name. Patients can rail all they want - but once their representatives at the federal level said they weren't for it - it made an almost impossible situation even more difficult. Lets not forget that the CDC was never going to sign to a name change.

It came down to question of resources for both the CAA and the CFSAC. The CFSAC probably would have voted for a Name Change but in their response they indicated that it would have taken all their efforts over the next couple of years and even then they would have probably failed.

So rather than embark on a losing battle they bucked the patient populations desires and fought for more funding etc. That argument didn't stop the patients from slamming them viciously of course.

These are all complex subjects. Do you think the CAA doesn't want a name change? Don't you think it would be easier for them if they didn't have to lobby for a disease called CFS?

There are other issues as well.

 

[Cort]

Name - Such as what to call it? The scientific community and that means, most importantly the CDC -since they have the last say in the matter - is only going to change the name when the new name can be backed up by scientific evidence.

So what to call CFS? There is no clear answer because there's no clear cause for this disease. Hopefully XMRV will change that - but as of now - theres no distinctive infection, brain or vascular or immune problem that we can say causes CFS. Given that the best name that was come up with was neuroendocrineimmune disease. The problem with that is that quite a few diseases have neuroendocrineimmune components. Plus its just not a very good name anyway.

The CAA could have spent the last eight years banging on a name change and won kudo's from the patient community and getting little else done and probably failed. Theres basically no good solution to the name question for the CAA; dammed if they do and dammed if they don't.

I'm a member of the Fair Name Change Committee - and we proposed ME/CFS. Of course many hated that name but that was the only name that we, after consulting with numerous experts, understood had a chance of success. I believe the CFIDS Association should adopt that name; other groups have and they should too. None of us on the committee expected them to do it right away given its more difficult for them to do that than anyone else but I think they would come around.

(We were going to reopen the campaign when the XMRV finding came out - now we're a little uncertain about which direction to go )

 

[Cort]

A Huge Problem for the CAA is their unwillingness or inability to explain themselves well; they actually do explain themselves at times but it tends to be brief; they often only do it once and its quickly forgotten in the uproar. I think if people got away from all the rhetoric they would see the CAA has a difficult job and that they often do it quite well (and with little support). This doesn't mean they shouldn't change: I can think of several changes I would like to see but we shouldn't forget how hard it is to lobby successfully for a disease that is so controversial and so poorly thought of in the medical community. For their size they have actually been described as being very successful. Its hard to get ANYTHING done in Washington but they have several things of note done.

For instance

• Only a handful of diseases have a federal advisory committee but oddly enough we have one all to ourselves.
• Only a handful of diseases have a Social Security Ruling specifically on their disease - but we do.
• We are still the only disease, I believe, that the CDC has mounted a media campaign for. Whatever peoples complaints about the media campaign it still presented CFS on nations airways as a serious disorder.

That's just the federal stuff.

 

[Cort]

What does this sentence mean?

the CAA appears to have somewhat co-opted PANDORA by having one of their founding members of the CFSAC committee...

The CAA is a patient support organization and the CFSAC is a federal advisory committee (?). I don't see how the two go together.

 

[Marylib]

Hilary

Another brilliant blog from Hilary. When I read something with truth in it, I know it, don't you?

Contrast it with (I am parahrasing) Suzanne Vernon's latest "now you kids just don't understand just how competitive and political this world of science is..." which seems true to you?

It is hard to let go of the old, there is a risk, a fear in it. But the world changes and we simply must change with it.

 

[Cort]

Honestly I see very little truth in Hilary's blog. Instead I see someone who is so consumed with rage that she'll say almost anything. I will post my comments later.

 

[anne]

I was glad for this post because I did not understand the extent of her antipathy toward the CAA. Now, I see where it's coming from. I'm learning all of this history, so I'll appreciate Cort's comments as well.

It does seem the CAA has tried to work within the system at times, trying to work with the CDC in the hopes that that will get them further than calling them out. It's one way to try to get things done, but it's bound to raise some ire--especially when it accomplished so little. Obviously, they're not doing that now. But I think the institutional mindset that led them to take that course also can manifest in some weakness in general. There's a point where caution becomes harmful, and even cowardly.

In this continued conversation, things can become a little Manichaen. Let's remember reasonable people can disagree. Mentioning something good the CAA has done doesn't make someone an apologist, and any CAA criticism is not necessarily kneejerk and irrational.

 

[Marylib]

For Cort

I am looking forward to your post. I want to understand where you are coming from. I want to understand where all concerned are coming from.

 

[starryeyes]

I do too Marylib. Hillary's post seems truthful to me. Each point brought back memories for me.

wildaisy- thanks so much for providing the link to her article.

Andrew and others -- these are some of the other patient organizations for ME/CFS that I trust:

The New Jersey Chronic Fatigue Syndrome Association Inc., The Wisconsin CFS Association; ME International; Co-Cure.org; The ME Association and The Alison Hunter Memorial Foundation.

 

[valia]

Honestly I see very little truth in Hilary's blog. Instead I see someone who is so consumed with rage that she'll say almost anything. I will post my comments later.

I wish I could muster some of this rage, I wish we all could, then perhaps we wouldn't be so easily trampled on.

 

[Cort]

There are reasons to desire change at the CFIDS Association but I don’t believe Hilary cites most of them. There are also reasons to open a dialog with the CAA but Hilary is not trying to open a dialog. I urge you to ask yourself if what is best for ME/CFS patients - a dialog with them or this kind of dumping. The CFIDS Association is going to stick around. They have their supporters. Do you want to enter into a dialog with them or just dump on them?

If you’ll look closely at my response I think you’ll see that a good portion of Hilary’s blog doesn’t make a lot of sense.

Did it become all about them, and not about you, when the CFIDS Association sought to position itself as a kind of mini-research institute, a provider of grants to scientists, with former CDC scientist Suzanne Vernon the arbiter of what was and was not worthy science?

Hilary believes that "Suzanne Vernon as an arbiter of what research is or is not worthy of funding means that the CFIDS Association is about not about 'you' but is about them. What does this mean? How does Suzanne Vernon assessing research projects become about ‘them not you’.

How does Hilary propose the CFIDS Association assess research projects. Dice? Does she want to have ME/CFS patients vote? Or does she want an experienced researcher to decide? She misses the fact the CFIDS Association also has multiple outside reviewers grade each grant proposal. That is how a rigorous grant review process works in the scientific world. I don't see how that process - as Hilary concludes -means the CAA is for themselves not you. An important part of the process and the part that turned out to be the most difficult for them - the outside review process- in fact insulated the CAA from the reviews.

She has failed to use her access, her voice, in any way that might have been helpful; instead, she has identified with government officials and their problems instead of your problems; she’s made it easy for them to keep you quiet and (and sick), all the while assuring you in that unctuous, phony PR patter that she’s on top of things.

• Creation of the Federal Advisory Committee on CFS (CFSAC) Continuation of the Federal Advisory Committee on CFS
• Pressured CDC to create the first ever Media Campaign on any disease - on CFS
• Pressured the Social Security Administration to create specific rules on CFS. CFS is now one of the few diseases to have a specific ruling on it.
  
• Used Senator and Congressman to dig up documents on the CDC over the past two years. Created the most substantive and rigorous examination of the CDC’s CFS research program. Called for new leadership at the CDC and the program to be moved to a new division.

“the CFIDS Assocation is CDC, and vice versa”, “Their (the CAA's) sister agency CDC”

Comments like this don’t even make sense. If you care about the facts then check out the documents below. If you just love the rhetoric and don’t care about the truth then don’t. I don’t know how you can agree with those statements if you do any digging into this matter. You basically have to ignore the last couple of years to do so. These are just some of the resources you can find on the CAA's 'assault' on the CDC over the past year and a half or so.

• Kim McCleary on the CDC's Five Year Plan
• CAA slams the CDC
  
• CAA/CDC: the Rumble Continues
  
• http://www.cfids.org/cfidslink/2009/070108.asp
  
• http://www.cfids.org/advocacy/testimony-mccleary-oct2008.pdf
  
  

“Vernon and the CFIDS Association fell all over themselves in an effort to caution that XMRV will probably apply only to a "sub-set;" it may be a "passenger;" the patients weren't well characterized; there must be co-factors, in other words, it's multi-factorial. “

CFIDS Association never said that XMRV will probably only apply to a subset. They cautioned as did virtually every other professional organization that the original study was limited to a specific subset of patients.

MEA Association

Further and much larger studies must be carried out using people with well defined ME/CFS in different countries. This work should include people at different stages of the illness (to see if XMRV is present in the same percentages in both early and late cases) and in all degrees of severity. Research in different countries is vital in view of the conflicting geographical findings relating to XMRV in prostate cancer. Different international laboratories, with solid experience in dealing with retroviral research, need to test for evidence of XMRV. The bottom line to this interesting research is that it currently raises more questions than answers

MERUK - UK - a prominent ME/CFS research and support group in the UK

Chief among these concerns cause and effect: the researchers’ work has shown a suggestive, significant association between the presence of XMRV and a diagnosis of ME/CFS, but this is far from proof that the virus has a direct or even indirect role in the development or maintenance of the illness. XMRV might prove to be simply a passenger virus carried by an immune-depressed ME/CFS patient population, with little or no influence on the illness.

Dr. Coffin

First is of course to establish what the real role of the virus is in this disease. And it’s not necessarily easy to establish causality. It took quite a while with HIV despite the real smoking guns you had. It’s fairly easy to establish in some kinds of cancers because you can actually see integration site specificity that would point to it, but in the case of other diseases whether the virus is the cause of the disease or a passenger, or just a geographic coincidence of infection with the disease, all of this remains to be established. CDC - blood samples from patients in other countries (possibly diagnosed with less stringent criteria) might throw up very different results.

Hilary wants XMRV to be what it isn’t yet - the answer. Until studies replicate the WPI’S findings and extend the results to the rest of the ME/CFS community we won’t know how far XMRV reaches. Polls on the Phoenix Rising website are just getting going but in the very early results more people are testing negative than positive to XMRV.

“Besides, XMRV is an infectious, cancer-causing retrovirus, and we know how they hate infectious diseases.”

CFIDS Association Grants for Pathogen Research. This is just off the top of my head mind you. The CAA has been funding research for over 20 years - I'm sure they funded other grants on pathogens. It doesn't appear that they hate infectious illnesses at all...

• Elaine DeFreitas - retrovirus
• Dr. John Martin - Mystery virus
• Epstein Bar Virus - Ronald Glaser
• Endogenous Retroviruses - Brigette Huber - “Results from Huber’s pilot study have shown a strong correlation between infectious agents and CFS.” From the description of the study.
• The title of the Banbury Conference the CAA produced was ‘From Infection to Neurometabolism’.

“With the other hand, it (the CAA) would be demanding clinical trials and drug development at FDA, instead of warning you it might take years for therapies to be developed.”

Hilary would have the CAA demand that the FDA develop drugs for CFS! If they were a real patient organization they would do that - of course they would! The only problem is that FDA doesn’t develop drugs; the drug companies. The FDA simply assesses how effective drugs are. (Imagine the conflict of interest if the FDA developed drugs and then was in charge of determining whether to sell them or not.) I for one am glad that the CAA isn’t blind enough to demand that the FDA develop drugs for this disease.

The triumph of passion over fact? You choose!

Like I said there are things to ask the CAA for; more assertive advocacy, more assertive stances on issues.... but this is not that and Hilary presents such a poisoned environment that its possible to even discuss those things. For a patient community that needs all the help it can get from every source they simply make things more difficult.

 

[Cort]

I don't believe Hilary Johnson should be anyones arbiter concerning the CAA. She not thinking clearing, she's making accusations that cannot be backed up and sometimes that don't even make sense. This is not the Hilary Johnson of Osler's Web.

Earlier she accused the CAA of being the "Bechtel' of the CFS community and running a 'pogrom' . She also called the 2009 Banbury Conference in which 35 of the top ME/CFS researcher met for a 3-day brainstorming session a 'snooze-fest'. Why? I don't know but I assume it was because it was produced by the CAA. That was the first brainstorming ME/CFS researcher session in years. Do you trust someone who would call getting our researchers together a 'snooze fest'. I don't.

Check out this blog: http://aboutmecfs.org/blog/?p=731

I want you to note that throughout this I'm digging up resources and presenting them. Hilary is making accusations. I don't see how, no matter how loved Hilary is - and rightfully so after Osler's Web - anyone who bothers to check out the facts cannot conclude that she's gone too far, much too far - repeatedly.

 

[sosumi]

So Kim McCleary and the CAA is supposedly the first to call for Reeve's head but today an article is posted to Co-Cure that she co-authored with Reeves...

Continuing Medical Education Challenges in Chronic Fatigue Syndrome.

Journal: BMC Med Educ. 2009 Dec 2;9(1):70. [Epub ahead of print

Authors: Brimmer DJ, McCleary KK, Lupton TA, Faryna KM, Reeves WC.

NLM Citation: PMID: 19954535

What's wrong with this picture?

 

[fresh_eyes]

looked up the publication cited by sosumi

http://www.ncbi.nlm.nih.gov/pubmed/19954535?dopt=Abstract

BMC Med Educ. 2009 Dec 2;9(1):70. [Epub ahead of print]
Continuing Medical Education Challenges in Chronic Fatigue Syndrome.

Brimmer DJ, McCleary KK, Lupton TA, Faryna KM, Reeves WC.

ABSTRACT: BACKGROUND: Chronic fatigue syndrome (CFS) affects at least 4 million people in the United States, yet only 16% of people with CFS have received a diagnosis or medical care for their illness. Educating health care professionals about the diagnosis and management of CFS may help to reduce population morbidity associated with CFS. METHODS: This report presents findings over a 5-year period from May 2000 to June 2006 during which we developed and implemented a health care professional educational program. The objective of the program was to distribute CFS continuing education materials to providers at professional conferences, offer online continuing education credits in different formats (e.g., print, video, and online), and evaluate the number of accreditation certificates awarded. RESULTS: We found that smaller conference size (OR = 80.17; 95% CI 8.80, 730.25), CFS illness related target audiences (OR = 36.0; 95% CI 2.94, 436.34), and conferences in which CFS research was highlighted (OR = 4.15; 95% CI 1.16, 14.83) significantly contributed to higher dissemination levels, as measured by visit rates to the education booth. While print and online courses were equally requested for continuing education credit opportunities, the online course resulted in 84% of the overall award certificates, compared to 14% for the print course. This remained consistent across all provider occupations: physicians, nurses, physician assistants, and allied health professionals. CONCLUSIONS: These findings suggest that educational programs promoting materials at conferences may increase dissemination efforts by targeting audiences, examining conference characteristics, and promoting online continuing education forums. KEYWORDS: CFS, continuing medical education, primary care/generalist education, chronic disease, allied health profession.

PMID: 19954535 [PubMed - as supplied by publisher]

 

[Cort]

Just read the blogs and links!

Read the abstract - its an analysis of the 5 year provider educational program that both the CDC and CAA were a part of. Did you expect Dr. Reeves would (or even could) cut out the CAA of an analysis of a program it participated in? Probably not.

Decidedly small stuff given the CAA has publicly many times called for the CDC's CFS program to be completely redone.

I think the links will give you a fuller idea of the CAA's relationship to the CDC.

Just read this one if you think they're buddy-buddy (or as Hilary proposes "CAA is CDC") (I dare you to read it! )

http://blog.aboutmecfs.org/?p=553

 

[Andrew]

You make a strong argument, Cort. Thanks for your tenacity.

 

[sosumi]

Just read the blogs and links!

Read the abstract - its an analysis of the 5 year provider educational program that both the CDC and CAA were a part of. Did you expect Dr. Reeves would (or even could) cut out the CAA of an analysis of a program it participated in? Probably not.

Decidedly small stuff given the CAA has publicly many times called for the CDC's CFS program to be completely redone.

I think the links will give you a fuller idea of the CAA's relationship to the CDC.

Just read this one if you think they're buddy-buddy (or as Hilary proposes "CAA is CDC") (I dare you to read it! )

http://blog.aboutmecfs.org/?p=553

Read my post again, Cort. You just made my point for me. You said the CAA and Kenny was the first group to call for Reeve's head. However, the study, as you pointed out, dates back to starting in 2000. There were other patient orgs and advocates calling for his head long before that.

 

[bluebonnet]

Cort

In the interest of full disclosure, it should be stated that the CFIDS Association publishes articles you write in their journal, The CFIDS Chronicle. That may have nothing to do with your defense of them, but it should at least be mentioned.

 

[Khalyal]

I don't believe Hilary Johnson should be anyones arbiter concerning the CAA. She not thinking clearing, she's making accusations that cannot be backed up and sometimes that don't even make sense. This is not the Hilary Johnson of Osler's Web.

I want you to note that throughout this I'm digging up resources and presenting them. Hilary is making accusations. I don't see how, no matter how loved Hilary is - and rightfully so after Osler's Web - anyone who bothers to check out the facts cannot conclude that she's gone too far, much too far - repeatedly.

Well.

I also think Hillary sounds angry, but I think reasonably so. I think she is EXACTLY the same Hillary that so meticulously and painstakingly documented the CFS story in Oslers Web.


Hillary claims that the CAA pulled the plug on Elaine DeFreitas.
She backs this up with first-hand information given to her by Marc Iverson, then-president, and Dr. David Bell.

Hillary claims that the CAA decided to be mainstream and cooperate with government, to the point of running articles by researchers and publishers for vetting before printing.
She backs this up with first-hand conversation with unnamed CFSAC member, and direct quotes by Kim McCleary. Further back up in personal conversation with Dr. Paul Cheney, regarding the overall tone of the CAA, is also mentioned.

Hillary claims that a Truth Squad beleaguered the roll-out of Oslers Web.
She backs this up by relating details of personal experience with the interference of NIH scientist Paul Levine during her book-tour.

Hillary claims that the CAA trashed Oslers Web and issued a press release, the gist of which was that journalists should not report on science.
If anyone can get their hands on that press release, it will pan itself out. I imagine Hillary has a copy.

Hillary claims that the CAAs Kim Kinney (McCleary) and Tom Sheridan set Bill Reeves up to run CDC without fear of reprisal, by enabling him (the problem) to become the whistleblower (unfireable).
Bill Reeves WAS part of the problem at the CDC. The CAA DID actively pursue this avenue of resolution. The end result WAS that Reeves ran us all into the ground.

Hillary claims that the CAA spent 3.5 million on public relations for CDC in 2006, and that CAA is a contractor to the government agency that is responsible for lack of research into this disease.
This is a matter of public record.

Hillary claims that the CAA hosted the rollout of CDCs causation theory at the National Press Club, DC, 2006, where CDC (starring Bill Reeves and Suzanne Vernon) explained that genetic predisposition to inability to handle stress, plus childhood abuse, equals CFS.
This is a matter of public record. Its also documented at the CAA website.

Hillary claims that Suzanne Vernon moved from CDC to CAA and Kim McCleary and Suzanne Vernon get final say on who gets a grant and who doesnt.
This is factual. There is an outline of how the grant proposals get handled right on the CAA website. The undercurrent of CDC headset is still there, has never been addressed, and no matter what spin you want to put on it, doesnt show any signs of letting up. Ive already given you all of my sources for why I have come to the same conclusion independently.

Hillary claims that the CAA turned down 6 grant requests from WPI.
Hillary most likely cant reveal her source for this. I have the same information from probably the same source, and cant reveal either. CAA has stated that they received NO requests for grants for XMRV research, but it most likely would not have been called XMRV research at the time, because that was the secret. But I personally am convinced, based on her track record, that Hillary has a source for this information and did not just pull it out of her donkey.

The rest of her blog is devoted to the XMRV cold war. All of that has been documented. No need to go over it again, but she saw the same things that many of us saw, things that were said or not said by the CAA, things that were done or not done.

So, I think she did a really good job, especially since a lot of her evidence is based on her actual conversations with the players, her first hand experiences in the writing and publishing of her book, and her investigative efforts during the long, LONG course of the nightmare we call CFS.

She was there, as were some of our long-time advocates such as John Herd and Roy Snow, like some of the Incline Village survivors such as Erik Johnson, like some of the medical people who were in on it from the beginning like Peterson, Bell, and Cheney....and all of the ones that were actually there say pretty much the same things, no apparent conflicting stories.

 

[Lily]

personal attacks.....

Thank you, Advocate. I agree and appreciate your abililty to address the issue so diplomatically.