CDC New Chronic Viral Diseases Branch Chief

[WillBeatCFS]

If Unger proves Reeves in sheeps' clothing, I'd love to see a campaign like TFA aimed at Sebelius. Ask her to just pull the CDC's funding entirely and give it to an agency actually working on the problem. I hate the idea of a single research dime being up for grabs but the CDC "research" has done considerably more harm than good. Nothing would literally be an improvement over a Reeves-like group. I'd like to see WPI get the money, or have it used for centers of excellence, but I doubt that could be done easily. Still, I'm sure the NIH could come up with a good use for additional funding... and both agencies are under Sebelius' umbrella so it's within her authority.

 

[Sean]

so the paradigm may be changing at the CDC.......

As bad as their history may be, and as bitter a pill it is for us to swallow, we must always allow for the possibility that this could happen. If the CDC do come around that will be a huge boost to our cause.

I agree with those who say that Jones getting the job would have been a disaster.

What I think it would be best to state what we expect or desire in a branch chief overseeing the CFS program....rather than condemning her - state what we want her to do.....that leaves things open a bit.

Sounds good.

I am also one who is not convinced that patients' protests had much to do with Reeves moving on. But no matter, he is gone. Let's move on from him.

 

[markmc20001]

I agree that stating what we would like Unger to do immediately would give her a chance to show her colors. Number 1 on my list is to get that website pulled down immediately and then rewritten to reflect the full research basis of ME/CFS.

The current website is biased beyond belief. As the government's "go to" site, it absolutely needs to be balanced and to reflect the entirety of research. I'd rather one that only had my point of view (physical causation) but, OK, their psych stuff could be on, too (though it pains my heart). Balance and all. But, without question, it needs to show XMRV, Klimas' (and others) research on immune dysfunction, etc. Right now, those items are buried, distorted, or left out entirely. Reality is that those studies are what is going to define ME/CFS research in the future, not the TATT garbage that the CDC has been putting out.

As far as the "treatment" section, the concept of treating symptoms should be highlighted -- it is somthing that can improve patients' quality of life immediately. CBT and graded exercise should be mentioned (again, pains my heart) because they show up in the literature but the severe limitations of both should be discussed. Ought to be a discussion of the impact of various definitions on research, too. Of course, all this would mean the CDC was ready to be honest and straightforward. If Unger does this, she WILL be changing course! (Sadly, I'm not holding my breath).

1) It's been a year since the release of the science paper and the CDC hasn't even bothered to duplicate the WPI testing methods. That's one of the first things that can happen to earn respect of the patients and doctors. Once that is done and we see the repsonse from the CDC we will know if they have good intentions or not.

2) Then open up the purse strings with a focus on infectious disease and treatments of infectious disease in CFS/ME.

3) Give CFS/ME a new name.

For a little good will from patients/doctors, Unger could admit to all the mistakes of the past. Then Unger can lay out a plan, in writing, for everything happening to earn the trust of the patient and physician community. Estimated dates of completion should also be included for all those action items.

Lets see some concrete action items for what IS going to CHANGE and WHEN it is going to change.

 

[Marty]

I get your angst and I agree that the CDC has been deaf, dumb and blind to the CFS community but I don't think we've been hammering the CDC with hundreds of thousands of letters. ....

Maybe I'm wrong. I quit the movement around 1995 and just happened to (bravely) check the internet in January 2010; did everyone else quit back in 1995, too? Because up to that point we were actively confronting the CDC with barrages of petitions and personal confrontations and pitifully long letters, organized through many support groups around the country. We testified at the early CFSAC meetings. (I remember Reeves getting up and leaving when it came time for patients to testify; we called out to him, and he turned and informed us that he had important things to do, and left.) Our best chance was in 1988 when just one CDC paper came up with the CFS moniker; we fought immediately and hard and persistently to not accept that name, but in the end, our doctors failed us. They thought they had to accept the new name to be nice to the CDC and gain NIH money. (Sound familiar?) If only they had stood their ground then....

By the mid 90's, new patients started using the CFS name because that is all they knew. And I was shocked now to see that even the CFIDS Association - the originator of the name "CFIDS" - uses the CFS name and is only called "CAA". We did multiple local and national TV shows every year. We held conferences every year. We wrote books and pamphlets. We engaged a network of reporters. We got so excited when we saw pictures of the retrovirus in 1992. We felt validation was just around the corner. (Sound familiar?) We worked ourselves to death. Literally; several of those people have died. It is sooo much easier now; do you mean to tell me that the movement just stopped in the mid 1990's when the early folks burned out?

When I started looking at the CFSAC meetings in 2010, I was very disheartened to find the same issues being fought - the name game, the begging attitude for funding, the same patient testimonies that we gave 20 years ago, CFSAC giving lots of smiles and still going in circles - not even following up on their own recommendations?!; there seemed to be no progress at all. So maybe you are right and the movement stopped in the mid-1990's? Who can tell us what went on then, in that void between activism and the present internet era?

Then I stumbled onto these forums and see a high level of emotion again for the science. It's mostly all talking among the choir, but it's there. The people are wonderfully verbal and capable and mostly knowledgeable; the potential is certainly there for real outreaching advocacy. If we only had a national advocacy leader to provide the organizing umbrella, but until then, we have great communication among ourselves, even when we are bed bound.

We have seen some good action advocacy items suggested on these forums in the last week. I hope individuals will step up - well, click up - to lead single initiatives. We know that we can't travel, but look what the St. Bart's protest did with only 9-10 people and empty wheelchairs. Ten people at each event could do wonders, if people are willing to ACT UP. I thought the signs at the last ME/CFSAC meeting were great, especially persisting after Wanda asked them to take them down. It may be that in the era of the internet, it will be single small groups that each do their own temporary project rather than counting on a national organization. Small scale projects designed to have national impact without killing the patients.

While I didn't support the Washington Post ad because it was scientifically premature, when I saw the ad, it sent shivers down my spine. It surely had impact, even if scientifically inappropriate. Maybe this represents the compromises we need to make, as different people do different projects. I know that we can no longer afford to be "nice", which is easy. Real confrontation with demands is not comfortable. So we have to be targeted and efficient so as not to waste our energy.

I wonder how many people today will engage in one of these action plans versus just talk and wait on the CDC? Did the movement really essentially retire for several years?

 

[Marty]

Number 1 on my list is to get that website pulled down immediately and then rewritten to reflect the full research basis of ME/CFS.

My number 1 action item also. But I don't see the goal as "balance"; I see it as to write what is helpful. Validation with the hard science is the main object. I don't see the CDC backtracking on all their psychobabble, so the alternate #1 goal is to pull the website down. If they are ever willing to separate their tired patients from their ill patients, they can construct a new and helpful site.

 

[Chris]

Hi; to go back to WikiLeaks possibilities, if we had some of the memos and letters that must have passed on such topics as the choice of Unger as new head, the refusal of grants to the WPI, the decision to invite Stoye to the WBG, memos to and from Sebelius over these CFS issues, we would at least know more than we do now! But I guess the chances are slight, and WikiLeaks seems determined to follow its own agenda-and of course is in some trouble already! But I would love to see them tackle areas like this, and general government / multinational relationships. Chris

 

[Dolphin]

Wikileaks angle

Not sure if anything could ever be found but I think the odds are more than 50/50 that the empiric criteria were born because the Wichita 2-day study (which cost $2m) didn't find enough CFS patients (in 2003, they invited in people who had been diagnosed in 1997-2000 in community studies - they were generally finding mildly affected people who were relatively high functioning).

It would have been very hard for them to produce CFS papers with the number of Fukuda CFS patients from the 2-day study. So they broadened what CFS was and suddenly they are able to produce CFS studies again. And so then, there couldn't be talk that $2m was wasted.

 

[Cort]

Maybe I'm wrong. I quit the movement around 1995 and just happened to (bravely) check the internet in January 2010; did everyone else quit back in 1995, too? Because up to that point we were actively confronting the CDC with barrages of petitions and personal confrontations and pitifully long letters, organized through many support groups around the country. We testified at the early CFSAC meetings. (I remember Reeves getting up and leaving when it came time for patients to testify; we called out to him, and he turned and informed us that he had important things to do, and left.) Our best chance was in 1988 when just one CDC paper came up with the CFS moniker; we fought immediately and hard and persistently to not accept that name, but in the end, our doctors failed us. They thought they had to accept the new name to be nice to the CDC and gain NIH money. (Sound familiar?) If only they had stood their ground then....

By the mid 90's, new patients started using the CFS name because that is all they knew. And I was shocked now to see that even the CFIDS Association - the originator of the name "CFIDS" - uses the CFS name and is only called "CAA". We did multiple local and national TV shows every year. We held conferences every year. We wrote books and pamphlets. We engaged a network of reporters. We got so excited when we saw pictures of the retrovirus in 1992. We felt validation was just around the corner. (Sound familiar?) We worked ourselves to death. Literally; several of those people have died. It is sooo much easier now; do you mean to tell me that the movement just stopped in the mid 1990's when the early folks burned out?

Mostly yes! There were several thriving support Groups in San Diego....they had full page stories on CFS - I've seen them - my jaw dropped; I had no idea such a thing ever happened. Tom Hennessey told me about getting on Larry King.......there are no support groups that I know of left in San Diego, there's none in Las Vegas. Pat Fero has said almost all the local groups in Wisconsin are gone.....what was there is almost all gone....

CFSAC meetings were like a dead zone until XMRV - empty chairs everywhere.....That era of activism which sprang to life with Incline Village and the De Freitas finding has melted away....The science did fade..there was little happening for several years.....the CAA even wasn't getting grant proposals....and now there's hope. All the groups that have sprung up have sprung up because people see opportunity....that's all that was missing - was opportunity.....

 

[SOC]

I agree that stating what we would like Unger to do immediately would give her a chance to show her colors. Number 1 on my list is to get that website pulled down immediately and then rewritten to reflect the full research basis of ME/CFS.

Excellent idea, WillBeatCFS! A letter-writing campaign about the website, clearly stating that the patient community sees this as her chance to show us what she intends to do with regard to ME/CFS will let her know we're watching and what we need to see.

If she can't (or won't) get the website fixed PDQ, then I think we can, in good conscience, write her off.

 

[Marty]

Excellent idea, Wilbert's! A letter-writing campaign about the website, clearly stating that the patient community sees this as her chance to show us what she intends to do with regard to ME/CFS will let her know we're watching and what we need to see.

If she can't (or won't) get the website fixed PDQ, then I think we can, in good conscience, write her off.

Excellent idea! Won't she love her full mailbox when she gets back from Christmas vacation? How about if one of you post this on a new project thread? We need response this week if possible. It has to become her #1 project, too. At the least, she can pull it down pronto.

And send a copy to Monroe and Sebelius and anyone else we can think of. It is pretty significant that we think that no website is better than what they have. What are their addresses?

I think Wanda would want to know, too.

 

[lancelot]

In a recent post (http://cfspatientadvocate.blogspot.com/2010/11/dr-marcus-conant-and-advocacy.html), The Advocate wrote of Dr. Conant's presentation at the ILADS conference:


Dr. Conant learned the hard way, in the trenches from the beginning of the AIDS crisis in San Fransisco. We're fortunate to have his support. He left his practice in SF and moved to NY to lend his talent to the MLV question. We should give his words careful consideration.

Can Dr. Unger be ""brought in?

Dr Conant will be a great addition to our CFS commnunity. He has done so much for HIV/AIDS and is now moved on to CFS. WONDERFUL!!

We should try to bring her in. It can only help us in that strategy.

 

[lancelot]

http://abcnews.go.com/Health/MindMo...ersonality-disorders/story?id=12102316&page=1



I definitely agree that Jones would have been worse.
See: http://forums.aboutmecfs.org/showth...ad-of-the-CDC-s-CFS-program-)&highlight=jones for some of the things he has said and published.
One more example here: http://forums.aboutmecfs.org/showth...e-of-the-views-of-the-CDC-s-James-(Jim)-Jones

Thank you! Believe it or not, she reads these threads.

 

[Angela Kennedy]

Thank you! Believe it or not, she reads these threads.

How do you know that?

 

[shannah]

Atlanta Unfiltered

CDC insider to run research on chronic fatigue syndrome
December 21, 2010 --
By KATE BENSON

Dr. Elizabeth Unger has been named to run the Atlanta-based Centers for Disease Control and Prevention’s branch researching chronic fatigue syndrome, a move greeted with skepticism by CFS advocacy groups.

Unger, acting chief of the CDC’s Chronic Viral Diseases Branch, replaces her longtime boss, Dr. William C. Reeves, who was reassigned in February. Reeves’ insistence on seeking a psychological explanation for CFS had enraged patient and medical groups that believe the cause is biological.

Reeves’ approach proved embarrassing a year ago when researchers in Nevada reported finding a strong correlation between chronic fatigue syndrome and XMRV, a retrovirus similar in some ways to the one that causes AIDS.

The CDC played no role in that study, which has since been corroborated in part by researchers from the U.S. Food and Drug Administration and the National Institutes of Health. Other papers have not found XMRV in CFS patient samples, and papers published Monday in Retrovirology raise the possibility of mouse DNA contamination skewing the results of those that did.

Unger has defended the CDC’s continuing use of the so-called 2005 Empiric definition of CFS, which critics dismiss as overly broad and — since only the CDC uses it — nearly useless. In testimony before an federal advisory panel in October, Dr. Unger hewed closely to the past, defending the CDC’s emphasis on psychosomatic and psychosocial research.

“She focuses on this to the exclusion of identifying pathogens, which is where the excitement, challenge and promise is right now,” Dr. Fred Friedberg, psychologist and president of the International Association of CFS, said at the time. He accused the CDC’s research program of “arrogance.”

Advocates have been pushing the CDC for years to fund outside research into a possible viral explanation for the debilitating disease, which afflicts as many as 1 million Americans — maybe more. Most of them are adult women.

Extramural researchers worldwide continue to criticize the CDC’s beleaguered program. “If the new permanent chief continues with the 1) empiric definition; 2) an emphasis on behavioral studies; and 3) ignores input from external scientists and other professionals, then our opposition to the program will continue,” Friedberg said Monday.

Dr. Suzanne Vernon, scientific director for the CFIDS Association and Dr. Unger’s former CDC colleague, believes the most important qualities for her to demonstrate would be “humble leadership, a comprehensive knowledge of the state of the science and medicine of CFS, practical experience with providing CFS care or conducting CFS research, a sense of urgency and practicality and the ability to honestly and skillfully face adversaries and controversy.”

Vernon and the CFIDS Association, in a prepared statement, charged this month that the CDC is wasting taxpayers’ money by seeking a psychosomatic cause that few other medical professionals believe is there:

“For the past three years, CDC’s CFS research program, housed in the Division of High Consequence Pathogens and Pathology, has sacrificed laboratory-based studies to conduct assessments of personality and early life stress. This shift has come under fire from advocacy organizations and the research community alike, including tough scrutiny by the Department of Health and Human Services CFS Advisory Committee that makes policy recommendations to the Secretary of Health and Human Services.”

“As a taxpayer, I’m not that happy,” CFIDS Association CEO Kim McCleary said.

Announcement of Unger’s promotion came a few days after a CDC representative voted against barring blood donations from patients who say they have been medically diagnosed with CFS.

Last week, an FDA advisory committee recommended that CFS patients be barred from donating blood, amid concerns of possibly contaminating the blood supply if a retrovirus were linked to the disease. The vote was 9-4 with the committee debating how a deferral of donors with chronic fatigue syndrome should be implemented.

Committee member Dr. William Bower , medical officer with the CDC Office of Blood, Organ and Other Tissue Safety, clarified his vote in an e-mail:

“I agree that people with CFS should not give blood. I voted ‘no’ on the question posed to the committee because I believe that using educational materials to discourage people with CFS symptoms from giving blood would be more effective than adding a question about whether or not they have a medical diagnosis of CFS.”

—————————————————-
http://www.atlantaunfiltered.com/2010/12/21/cdc-insider-to-run-research-on-chronic-fatigue-syndrome/

also being discussed here:

http://forums.aboutmecfs.org/showth...-chronic-fatigue-syndrome&p=145413#post145413

 

[medfeb]

I am the mother of a 23 year old son who came down with ME/CFS in 2010 after a bout of Giardia and Lyme. In the last 8 months, I have begun to experience what youve all lived for years both in terms of the impact that this has had on my son and how impossible it is to get any answers from the medical community. But when I turned to the web, I spent countless hours sifting through a plethora of sites that sent me in a million different directions. From my admittedly limited exposure, the comments in this thread about the need for a national advocacy group, an up-to-date patient (and family) web site and a new direction for the CDC struck me as right on!!

So how to make it happen whats the action plan? At the risk of alienating any of you who know so much more about this than I, I went through this thread and have tried to collate the ideas that you expressed into a single list, added one or two from my experiences and am sending it back for your consideration as a strawman for a plan that could then be broken out into smaller chunks of actions.

If this doesnt make sense, just chalk it up to my inexperience. If it does make sense, feel free to fix what I missed or got wrong and I will do my best to collate those comments.
Also, feel free to fill me in on where I am naive. For instance: 1) what is keeping the different advocacy groups from coming together in a concerted way? 2) Could the different advocacy groups agree on a common set of points that they expect of the CDC at this point? Would CFIDS, IACFS agree with the points below or some revision of them?


Strawman Summary of the action recommendations in this thread

1. Create a national patient advocacy group

• 
  Who are the main patient advocacy groups and what will it take to get them to work together? this community, CFIDS Association of America, IACFS/ME, who else?

• 
  Who are the other key players that can advance the cause and how can you build out that network?ME/CFS specific - WPI, key ME/CFS docs and researchers, CFSAC, who else? Other Neuroimmuno diseases

• 
  How can your families be engaged to help/advocate for you?

2. Influence/Pressure the CDC
Right now a response (press release or some other kind of campaign) to the naming of Unger state explicitly what you expect to happen - e.g.

• 
  Strengthen communication channels with patients, doctors and researchers

• 
  Rename the disease, acknowledge that physiological underpinnings

• 
  Change the criteria used to define ME/CFS drop the CDCs empiric criteria - is there consensus that the Canadian guidelines are the way to go?

• 
  Update/Redo the CDC strategy for ME/CFS to reflect state of science (the current strategy is from early 2009, still appears to reflect strong psychological orientation)

• 
  Use updated strategy to refocus research dollars

• 
  Update the CDC site especially
  i. Update/redo information about etiology and treatment that is currently available on the CDC site. The information is old. emphasizes the psychological underpinnings
  ii. Comprehensive overview of research being conducted into ME/CFS whether CDC funded or not

• 
  Implement a physician education and outreach program to address the abysmal way that doctors handle CFS patients today my son was sent off to a bunch of different experts each of who looked at a piece of the puzzle with no one, even his GP, taking on ownership/partnering with him to put the pieces together.

Ideally the above patient advocacy groups could agree and issue together - is that possible?

Longer term

• 
  Campaign to get dollars redirected if CDC doesnt change research strategy like campaign TFA aimed at Sebelius

• 
  Investigate the CDCs handling of ME/CFS over the years
  i. Documentary (video michael moore type or book)
  ii. wikileaks or FOI requests - "memos and letters that must have passed on such topics as the choice of Unger as new head, the refusal of grants to the WPI, the decision to invite Stoye to the WBG, memos to and from Sebelius over these CFS issues"

3. Other action - some of this would have to wait for the a broader advocacy group to form

• 
  Implement a new or update an existing site for patients and their families - organized, up-to-date information to help understand the disease, different treatment protocols, where to find support, webinars, action alerts, etc. Whats out there is old content or hard to navigate, hard to understand. Heres one idea but there may be better models http://www.michaeljfox.org/living.cfm. Could the CFIDS site be revamped to be this? I dont know what the history is with CFIDS org so this may be a dump question but there are some things that are good about the site but its not up to date and is hard to navigate.

• 
  Advocate for research funds influence government, raise private, influence Pharma

• 
  Advocate for research causes - WPI, any others? Fund raising drive for WPI?

• 
  Raise public awareness to counter perception of stigmatism of CFS community
  i. Find a publically known spokesman - with CFS (L. Hildebrand, who else?) or without
  ii. Youtube or Facebook campaign?
  iii. Engage the media and leverage them to get the word out

• 
  Influence the NIH, CFSAC, Congress - On what?

 

[Dolphin]

Looks like you have your thinking cap on there, medfeb. Glad you've joined the movement.

• Change the criteria used to define ME/CFS – drop the CDC’s empiric criteria - is there consensus that the Canadian guidelines are the way to go?

We're probably as near a consensus as one is going to get. That is in terms of using them for research.

I would actually like the way Lenny Jason and co did it for the paediatric definition where patients who didn't satisfy every single criteria could get a diagnosis or preliminary diagnosis for clinical practice.

Anyway, I'll leave a lot of talk to others - I've too much on to take much more on myself.

I think you've enough there to start a new thread. A lot of people may not see all your ideas if you just leave them here deep in this thread. You could post a new thread and mention it was based on some points in this thread or whatever and link to this thread; and similarly have a link in this thread to the new thread. Just thinking aloud.

 

[medfeb]

Thanks for the suggestion, Dolphin.

Here's the link to the new thread = Building an advocacy plan in response to Unger appointment