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

[Khalyal]

Khaly, thanks for popping over to encourage input regarding the CAA. This thread has some good comments that you might want to consider.

I totally agree with this, and I will be glad to include anyone's comments here, if the posters will give me permission to do so.

Posters, who would like their comments included in the submission we make to Brian Smith?

Thanks,
Khaly

 

[fresh_eyes]

So glad you're on this, Khaly. You might consider starting a new thread as well to collect input.

 

[The Phantom]

A great question hvs and one we should be asking all of our advocacy groups. The diagnostic criteria issue needs to be big now, not 6 months down the track when the CDC have swaggered on stage to "disprove" the WPI findings using samples from people who do not meet the criteria for ME/CFS.

I totally agree. The CAA should explicitly state NOW that only research that uses the Fukuda definition and the Canadian Consensus definition is valid. They should specifically state that the Oxford criteria and the Reeves definition do not define ME/CFS. The CAA should put out a statement that no government (or CAA) funding should be used for research using the Reeves definition. If they are not willing to do this it is my opinion that they do not represent us. If they fail to make this statement before the CDC publishes a study refuting the XMRV association using the Georgia or the Wichita 2-day cohorts they are actively harming us. In that case, they should change their name to ICFA: the Idiopathic Chronic Fatigue Association, or RDA: Reeves' Disease Association.

By the way, if anyone hasn't signed Tom Kindlon's petition against the Reeves definition now is the time to do it. Here's the link: http://bit.ly/nYHy5

It would be great to see a few names from the CAA leadership on this petition. This could be difficult for Dr. Vernon, given that she was a co-author of the Reeves (2005) paper that introduced the definition, but it would be an indication of her awareness of the problems with the definition and her seriousness about correcting her error.

In addition, the CAA should:
(1) ask (again) for a replacement for Reeves.
(2) ask (again) for a new 5 year plan from Reeves' replacement and insist that researchers who have used the Oxford or Reeves definition in their research not be involved as reviewers, because they clearly do not understand the disease.
(3) fund a retrospective review of all ME/CFS research that looks at what criteria were used for each study so we get an overview of what we know about ME/CFS (as defined by Fukuda, Ramsey & Canadian Consensus) versus Idiopathic Chronic Fatigue versus Reeves' Disease. It would also be useful, if possible, to separate out the findings for people meeting Fukuda, Ramsey & Canadian Consensus, so we can see what are the differences (if any) between these groups. This is a logical study for them to fund; it is within their financial means. They should do it and have it ready for publication within a year.
(4) make sure the NIH funds a collaborative trials network.
(5) advocate tirelessly and transparently for at least 6 centers of excellence, including WPI, which can do research, train physicians and TAKE CARE OF PATIENTS.
(6) if and when there are 2 studies that verify the XMRV association with ME/CFS, immediately ask for a congressional investigation into why Elaine DeFreitas' research on retroviruses and ME/CFS was not pursued in the early '90s.

And to Khaly, you have my permission to include any of these comments in your communication with the CAA & thanks for your blog and your efforts!

 

[Marylib]

Khaly

You can quote me, but since I cant remember what i said, please leave out the embarrassing bits.

 

[anne]

Khaly, if you see something you like, just PM whoever wrote it. Obviously, you can use anything I've said. It's great that you're doing this.

 

[andreamarie]

Neither the CAA or the NCF have done advocacy. I know because I have two other diseases and saw how advocacy works. When I was diagnosed with Crohn's disease in '65 I asked my doctor to bring me a textbook. There was less than a page and most of it described the patient as having a "passive mother" and other psychiatric nonsense. I had just had my blood supply replaced twice, had part of my intestine removed, had a positive pathology report, but it was still a "psychiatric diagnosis."

The "Crohn's & Colitis Foundation" (that was not the original name: Crohn's had eleven names) formed in '66 and started with an alliance of a few gastroenterologists and savvy board members. THEY SPENT SEVEN YEARS WORKING ON DISPELLING THE MYTHOLOGY. I did see a psychiatrist who told me Crohn's was NOT a psychiatric illness and I cried for half an hour (he really must have thought I was nuts) because I wanted him to say it was so he could talk me out of it. I had had five near death experiences in three years. When I went into remission I kept the Crohn's a secret because people were not getting hired for jobs because it was assumed they were crazy. Young doctors I meet now are stunned when I tell them this.

Same thing when I got interstitial cystiits, which I'm sure is related to CFS and FMS. Urology texts said it was a psychiatric dx caused by female hysteria. The Interstitial Cystitis Foundation pounced and got the textbooks changed and recruited urologists. No one thinks you're crazy anymore but there is only one good study.

When Nancy Klimas said she'd rather have HIV than CFS in the NYTimes, I knew we'd made a breakthrough. When I told the psychiatrist I still see (the one doctor who NEVER said I was crazy with any of my illnesses) that this upset me because I'd seen HIV close up, he said THAT IS THE RULE OF ADVOCACY. He knows: he was one of the few doctors who took on the tobacco industry.

 

[fresh_eyes]

Thanks for sharing your experiences, andreamarie. I had not known those conditions were treated as psychiatric - arrrrgh! Well, don't get me started. I was totally with you up to this point, then you lost me:

When Nancy Klimas said she'd rather have HIV than CFS in the NYTimes, I knew we'd made a breakthrough. When I told the psychiatrist I still see (the one doctor who NEVER said I was crazy with any of my illnesses) that this upset me because I'd seen HIV close up, he said THAT IS THE RULE OF ADVOCACY. He knows: he was one of the few doctors who took on the tobacco industry.

WHAT is the rule of advocacy? That it will upset people?

 

[andreamarie]

I did p.r. and placed PSA's for the Crohn's & Colitis Foundation. Advocacy is not for the patient: it is to wake up the world around them to the patient's situation. E.g.: The most riveting advocacy breakthrough in cigarettes was having the former Marlboro Men who were dying of lung cancer do PSA's on TV. These virile cowboys were now deathly ill and looked it. They were attached to their oxygyn machines. Some had died of lung cancer and did voiceovers. Obviously, this was terrifying to anyone who had lung cancer but that was not the focus.

When I was working on having a mandated benefit passed for a treatment for Crohn's disease I had to go to the State House in MA. I always brought the "dog and pony show" : the sickest children in their mother's arms.

I could go on but I'm having a really bad day.

 

[anne]

Hey, Andrea, check your messages!

 

[Khalyal]

Thank you!

For everyone that has made their comments either here, or at my blogsite, or at any of the number of other places this poll was posted, thank you! I will compile everybody's comments over the Thanksgiving weekend. There is still plenty of time, so if you haven't commented yet and would like to, please do!

I haven't contacted everyone here who have made such great comments, about including them in the list. If I haven't contacted you yet, I am still working on it and most likely just haven't gotten to you yet and for that I apologize!

If you'd like, you can also contact me through www.cfsuntied.com/blog1 or via pm here.

Thanks again, everyone.
Khaly

 

[Cort]

Objectivity Lacking

I just put in my ten cents - I hope you will consider my points. I was dismayed by my of the comments - not just the tone but the misinformation in some of them.

Its very difficult in this community to have an objective conversation about the CFIDS Association. People who are upset with it for one reason or another will use any argument to tear them down.

A case in point; Suzanne Vernon has now become a public enemy because she was a co-author of the Empirical definition. Never mind the fact that she was one of the last authors of it or that she may have been obligated to be a co-author by Dr. Reeves or even the fact that at that time she may have felt it was a good definition and has changed her mind over time.

• Nevermind the fact the CFIDS Association - she is a scientific director for - has come out strongly against the empirical definition.
  
• Never mind the fact that she has co-authored dozens of papers on immune, neuroendocrine and other subjects on CFS that have nothing to do with the empirical definition.
  
• Never mind the fact that under her direction CFIDS Association is sponsoring research on gastrointestinal, brain mitochondrial, endogenous retrovirus and vascular problems in CFS patients.
• Nevermind the fact that CFIDS Association does not allow its researchers to use the empirical definition in their studies.
  
• Nevermind the fact that under her direction CFIDS Association is trying to develop an international research network that will share samples, share data, use standardized approaches to testing and foster collaboration.
  
• Nevermind the Fact that Dr. Vernon got the funding to have 35 researchers spent three days at Cold Harbor discussing chronic fatigue syndrome.

Nevermind all that - in Khaly's blog Dr. Vernon gets one mention - as a co-author of the empirical definition.

 

[valia]

I dont think we are here to defend any organisation, whether it be the CDC, CFIDS, MEA UK, AFME or any individual eg: Simon Wessely, Charles Shepherd, Suzanne Vernon or Reeves.

Are we not here to defend ourselves?

And if they dont cut the mustard BIN THEM!

 

[Dolphin]

A case in point; Suzanne Vernon has now become a public enemy because she was a co-author of the Empirical definition. Never mind the fact that she was one of the last authors of it or that she may have been obligated to be a co-author by Dr. Reeves or even the fact that at that time she may have felt it was a good definition and has changed her mind over time.

I can understand you defending her.

However, I have no idea why she would ever think it was a good definition. IMO, it doesn't say much for her views of CFS if she thought it was a good definition. However, perhaps she now knows more about CFS.

I'm hoping it was more she felt some pressure to sign it as a CDC employee.

Added: There is a chance that she may never have looked that closely at the questionnaires and had the "wool pulled over her eyes". She is a biological scientist and might not have looked at what the subscales of the questionnaires actually ask about.

Anyway I hope people keep the pressure up on the definition issue. I was very disappointed that I have had to devote so much of my energy to the issue in 2009 (as I have plenty of responsibilities in Ireland and would also like to sent more letters to the editor to medical journals but they take time). But it had to be done as dozens of papers had already been published and there wasn't that much real opposition to it before the petition was set up - it was referred to now and again but there was no concerted action and people weren't isolating the studies that used it.

 

[anne]

I don't think without more information we can blame Vernon for the definition. She worked under Bill Reeves doing CFS--she probably did some part of the research or something, but that's her job. She was delegated something and she did it. We don't even know if she had any idea what the whole of the project was. Her place as the second-to-last person on the study implies her role or status was insignificant.

 

[Andrew]

Its very difficult in this community to have an objective conversation about the CFIDS Association. People who are upset with it for one reason or another will use any argument to tear them down.

A case in point; Suzanne Vernon...

As you know, I'm upset with CAA. But I agree with your points about Susan Vernon. When I look at Vernon's overall plan, I can't fault her. Also, yesterday I looked at her information about XMRV and see nothing wrong. She is giving cautions, but so is David Bell. And as for her being on the empirical definition, I can't condemn her for that. I don't know what part she played or how she felt about it. Maybe she could not wait to get out of the CDC, and going to work for the CAA gave her a chance to do better work.

 

[Andrew]

Interesting. I just did a Google search on the NCF site and they have not commented on XMRV and WPI one way or the others.

 

[Cort]

This is from the CAA's response to the strategic draft plan:

3. Empiric definition foundation: In spite of nearly unanimous objection, the strategic plan outlines studies based on the application of the flawed empiric definition and the clinical and laboratory studies utilize the 113 CFS patients identified at baseline of the community-based study of CFS in Georgia (as selected using the empiric definition).

http://www.cfids.org/temp/research-plan-response.pdf

You might want to check out the CAA's reports, letters, etc regarding the CDC over the past couple of years. There is still this idea out there that the CAA is close to the CDC

http://www.cfids.org/cfidslink/2009/070108.asp

 

[Khalyal]

I dont think we are here to defend any organisation, whether it be the CDC, CFIDS, MEA UK, AFME or any individual eg: Simon Wessely, Charles Shepherd, Suzanne Vernon or Reeves.

Are we not here to defend ourselves?

And if they dont cut the mustard BIN THEM!

Exactly. This is the essence of what we need to be focused on.

 

[Dolphin]

Thanks, Cort. I understand that the CFIDS Assn has publicly said it does not agree with the Reeves' definition. Has Vernon, herself, spoken to the question?

We do have the following which was in the September (?) 2009 CFIDSlink

http://www.cfids.org/cfidslink/2009/090203.asp

on

Jason LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease Control’s empirical chronic fatigue syndrome case Definition. Journal of Disability Policy Studies, volume 20, pages 93-100, September 2009.

which ended with

Note: Suzanne D. Vernon, one of 10 authors listed on the 2005 paper, is no longer employed by CDC. Like many other scientists and advocates, she has expressed concerns about the CDC’s continued application of the empiric criteria which have shown not to serve the original intended purpose of providing standardized, reproducible criteria for CFS.

I don't necessarily have major doubts about her. Just like a lot of scientists, she might be happy to analyse the data that is put in front of her. That's why we continue to need patient input I think to watch that people are really studying our illness.

Also it does weaken her and to a lesser extent the CAA's position in arguing against the empiric definition so it's up to us to do what we can. It's of course very important with the XMRV study. But the CDC have been pumping out research studies using this definition since the end of 2005 and not enough people have been making a fuss in my eyes (up till the last few months - fingers crossed this continues).

 

[Khalyal]

If the CAA, or its leadership, could represent the disease as being exactly what it was based on, and not turn the original descriptors into just another subset of a fatigue disorder, then I would feel like we had some real advocacy going on.

But when the patient fact sheets and physician packets describe something that sounds a lot closer to Teitelbaum's disease than it does to Peterson's disease, then there is a disconnect. When the CAA says that Osler's Web is old history and no longer relevant, there is a disconnect. When the Faces of CFS project makes us sound like we are suffering from tiredness, there is a disconnect. When every single XMRV related grant request gets denied, there is a disconnect. When genetic research is based on the allostatic and stressor-related genes, there is a disconnect.

We can congratulate our advocacy for mail-outs and research, as they have surely done a lot of that. But if it is not based on accurate information, there is a disconnect.

Cort, you accused me of not presenting both sides. It was never my mission to go into the entire advocacy history of this group. I am a blogger, not a reporter. I am blogging on what is happening right now and the reasons why it disturbs me. If you watched the XMRV drama unfold on Facebook, then you know that CAA did not get behind it for quite some time and made several comments that were perceived by many to be backhanded jabs at WPI's research. I was not the only, or anywhere near the first, to notice.

We are not in a debate about the organization. We are in a fight for our lives, and I don't have time for excuses on why this can't be done or that can't be done. Mary Schweitzer made some excellent recommendations on free-flow of information up and down between a national npo and the state and local organizations. There is no good reason why this can't be implemented, as the infrastructure is mostly already in place. I'm weary of "can't".