Kim McCleary On the CDC’s Five Year Plan

June 2, 2009

Posted by Cort Johnson

“I was sitting there yesterday (during the CDC presentation) feeling like my head was going to blow off my shoulders”

The CFID’s Association of America has been leading the way on the CDC review. Kim McCleary sits through every CFSAC meeting – not an easy task in that often mostly empty room – and takes notes.  It was the contrast between what Dr. Reeves said the program was going to do and what it actually did that apparently triggered their investigation. Projects that were supposed to start didn’t, others that started seemed to drag on and on and they seemed to have lost their zest. The CAA began taking a deeper look. When the ten year review came up they reported their findings. They called for more accountability, for a strategic plan with specific goals, for more creative research, for new leadership and a new home for the program – basically they called for a complete overhaul of the program.

The Plan – They didn’t get any of it. It was as if their complaints had fallen on deaf ears. Despite all the calls for specifics Dr. Reeves gave a talk that was big on the past but which gave little indication that the CDC had tightened up its ship. I was able to talk to Kim during a break. It seemed to me that Dr. Reeves had spent most his time talking about either the past or how the plan had come about. He didn’t seem to address the future much. I asked her about that and she agreed.

“Dr. Reeves spent all his time on past history and then nobody realized that we’re supposed to be thinking about 2014. Where’s that in this plan?“

“That Vision Thing” One of the CFID’s Association’s chief concerns – perhaps their major concern – is what they believe has been the program’s lack of vision and a paucity of innovative research. (The latest publication from the group examined just two common immune factors). I asked her if present plan give her any hope in this area? It didn’t.

“The fMRI stuff they’re doing has been done by Deluca, Lange and others. Now they want to study CBT- well, that’s been studied to death by NIH funded investigators and by investigators in the UK. We don’t need more data on that. It’s basically a kitchen sink plan with a few popular accessories.”

The CFID’s Association believes there are lots of good ideas out there but few of them are making it to the CDC’s research team. It’s not that the research the CDC is doing is necessarily ‘bad’ but what the group has missed out on by making the choices it has. The cost of doing another sleep study, a two-factor inflammation study, another CBT study , a metabolic syndrome study, is not participating in other research avenues.   Kim noted that

“Many research teams come to them with ideas for collaboration and they’re told “It’s a great project but we don’t have the money to do that”….but it’s all about opportunity costs. If you’ve got four or five million dollars and you’re going to study unwellness in Bibb County, Georgia and you’re going to collaborate with a psychiatry group at Emory and with Peter White on implementing the NICE guidelines in the United States then you can’t do any other things because you’ve spent all your money on those things. “

Collaboration? Another frequently cited problem during the comment session and by the CFSAC panel itself was a lack of collaboration. The CFSAC panel bluntly took Dr. Reeves to task for treating the rest of the research community as junior partners or almost underlings.
Now the CDC was stating that three international workshops would take place over the next year. What was the CAA’s take on this development? Did it suggest that the CDC that this rather closed program was finally opening up? Kim McCleary was not holding her breath noting once again that the plan lacked specifics – there weren’t any with regard to workshop membership – which left the program more than enough wiggle room to continue acting as it had in the past.

“They didn’t describe how they are going to pick participants or the agenda. We’ll see if they control the participant list as they have for the past five years. Someone said yesterday that your (the CDC’s) “idea of partnership seems to be more like subcontracting than it is getting real engagement and trying to get people’s ideas in on the front end.”

Dr Reeves had originally promised an international workshop would take place in 2008 but here it was the middle of 2009 – evidence of another project that had gone off the rails. Poor planning had been a key theme of the CAA’s report.
Fiscal Accountability? After all the CFIDS Association’s documentation of fiscal mismanagement the plan also lacked basic aspects of fiscal accountability. The CFSAC panel pointedly asked the CDC personnel how they expected to achieve the results of their plan given the meager funding the program now receives. None of the staffers had an answer for that. This kind of oversight, coming on the tail-end of the CFIDS Association investigation that found evidence of poor accountability came as a bit of shock.

“They didn’t even have a sense of how much it would cost to do this. That was another kind of astounding thing”

This made me wonder if the CDC had ever really taken note of the CFIDS Association’s assertions of fiscal problems. They CAA formally asked the CDC to provide semi-annual reviews of their expenditures. What was their response?

“They have said that they will continue to be transparent but they weren’t specific about when. They should at least provide that information in the agency’s annual report to Congress. They’ve been responsive to requests for data, but nobody’s doing any serious analysis. The Emory GCRC study is now, I believe, over four million dollars (through 2008) for 60 patients and 30 controls to analyze response to a public speaking stress test. That’s about $50,000 per subject, or $150,000 per CFS patient studied.”

I noted that makes it probably the most expensive research project ever…..Kim responded

“Exactly and they can account for every penny of it but nobody seems to care whether that’s the right thing to spend that money on. That’s the kind of accountability I’m looking for – not just a pretty spreadsheet where all the totals add up. “

You went to the leadership. You had congressional support. Was there any recognition that they’ve kind of fumbled away a lot of money?

“No – no recognition”

How about the idea that they are pursuing less than creative research avenues?

“No, no recognition . I mean that was what this whole strategic planning process was about. I’m going to go back and look at the latest research planning update – I think it was from 2006. I’ll bet most of it is consistent with this plan, which was supposed to be forward thinking – looking ahead five years. I don’t see anything in here that’s particularly innovative.”

Willful Disregard? The CAA didn’t jump on the CDC out of the blue. They got access to CDC records, studied them and over the last year or so have tried to work out their differences in private. It was only after that didn’t work that they went public. They’ve richly documented their assertions. They’re known for their objectivity. If anything the patient community thinks they’re are too conservative.  Given their history and the amount of work they did their lack of traction at the agency is troubling. It suggests that the program’s success is simply not a priority at the agency.
CFS Still Odd Man Out at the CDC - I talked to the Director of the Rickettsial Branch, Dr. Monroe and the CDC’s liason to the CFSAC, Sarah Wiley, at the break. I asked if it wasn’t a bit much to ask their researchers to cover so much ground (find subsets, biomarkers, redefine the disease, provide treatment trials, determine prevalence, educate physicians and public health officials, etc. ) on 25% less money than they had 10 years ago.

They admitted the difficulties but said their hands were tied – it was Congress, after all, that decided how much they could spend on chronic fatigue syndrome. But surely Congress asked for the CDC’s recommendations on spending? “ Yes” . Had they ever recommended increasing spending over the past ten years. “No”. Dr. Monroe implied that if they had it would have been cut at higher levels anyway.
To the CDC’s credit they’ve funded studies that have very powerfully shown the high societal costs this disorder has. To their discredit they’ve completely ignored the implications of those studies. It bears repeating – the CDC is spending 25% less on chronic fatigue syndrome than it did ten years ago.
It could very well be that the CDC just doesn’t want to participate in the hassle of finding new leadership, moving the program to a better place in the agency and re-organizing it. If they’re allowing its budget to drop so significantly even as they’re increasing their prevalence figures four-fold why should we think they have any interest in listening to anyone’s concerns about the program? Over the past year Kim has interacted with CDC officials more than anyone else. I wondered whether the CDC just wasn’t really concerned about how effective this program is. She stated

“I don’t know how to make it any more clear to them that they should be concerned. I sat with Sarah Wiley and Mike Miller and Steve Monroe in Senator’s Reid’s office a year ago”.

But then something happened – the November External Peer Review….

“ I think they were ready to recognize the need to change before the November peer review. That clearly became their inoculation against any criticism of the program. Reeves’ comments yesterday about Peter White being a favorite “sparring partner” should have been enough to indicate the conflict of interest he had in participating as 1 of four people on the peer review.”

A Defining Moment -The Peer Review was produced by four invited researchers who spent three days at the CDC and then shortly thereafter produced a report that addressed none of the CFID’s Association’s claims. It hailed the CDC’s accomplishments, proposed that they build a international research network, and proposed that they lead the field with regard to treatment guidelines and physician education. They also backed the Empirical Definition.
Not long after this Dr. Reeves faced a barrage of complaints about his lack of collaboration, both the CFSAC and IACFS/ME called for the ditching of the Empirical definition and both asserted that new leadership was needed at the CDC. At the same time the external review panel was proposing the CDC lead the field in educating physicians the CFIDS Association released a physician education program on Medscape (which Dr. Reeves refused to collaborate on) which enrolled more physicians in a couple of months than the moribund CDC provider education program had in years.

Kryptonite - In short the report turned out to be out of touch with virtually every other assessment of the CDC’s program yet it’s become the fulcrum CDC officials have used to turn away every negative assessment of the program. It’s basically been kryptonite to the CFID’s Association’s and other attempts to induce major reforms at the CDC. It was immediately posted to their website and CDC officials bring it up again and again. At the latest meeting Dr. Reeves hailed it frequently and Dr. Monroe exclaimed what an excellent report it was. The CDC’s focus on it has naturally left Kim McCleary more than a little chagrined.

“A friend sent me an e-mail last night after watching the videocast suggesting that we create a new drinking game. Every time somebody from CDC mentions the 2008 external peer review as a reason why they can do whatever they want to do, we take a drink. I’d have been drunk before lunch time whether I drank scotch or vanilla extract.”

The Next Step. Patients who feel change is needed got a boost in the arm from the IACFS/ME’s and the CFSAC’s recommendations. The CDC seems resolved not to make major changes in the CFS program but the review period is not over and one wonders how they can not respond to the increasing roar for change.
The (real) Draft Five Year Strategic Plan has been released on the CDC’s site and they’re taking comments until June 30th. We have a new Secretary of the Dept of Health and Human Services (Gov. Sibelius) and new leadership at the CDC itself. Using their virtual lobby day technology the CAA is providing patients the opportunity to make their views known to the CDC and to  request Secretary Sibelius to implement the CFSAC panel’s recommendation for new leadership at the CDC. The process continues…

15 comments

{ 12 comments… read them below or add one }

Tracey Kristal June 3, 2009 at 3:01 pm

I’m very appreciative of you, Cort for working so hard to make important changes for CFS at the CDC. I filled out all of the letters they set up at the CFSAA which made it very easy to be an advocate for change. I watched the meeting both days and I was losing my cool too. It feels so impossible but we have to keep doing all we can to create change in our govt. on this issue. I’m just grateful we have great people on our side like you. :)

Tracey (CFS Veteran of 25 years)

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cort June 3, 2009 at 5:03 pm

Thanks Tracey,

And I’m very glad for the CFID’s Association. People may have X or Y gripe about the Association but you know there’s nobody doing the work they do – I mean nobody! There’s nobody digging around in there – Nobody! Patients aren’t doing it, support groups aren’t doing it. If they hadn’t brought out the stuff about the program – I imagine that, except for a few dogged critics, the CDC would be sailing through this review period. Say what you like about them – they’ve put their neck out on this one. We need strong professional organizations!

Anyway – thanks for the message. I appreciate it – sorry you’ve had to deal with this for so long!

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Henrik Giertler June 3, 2009 at 6:42 pm

A big note of support from me too.
It’s a David vs Goliath with the CDC.
My fullest agreement with above comments. The CDC would put
the CFS money towards Beauty Therapy Research if left unchallenged.

Thanks for your hard work.

Henrik

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Jeanie Pochatko June 4, 2009 at 5:04 am

Cort… I cannot express to you how much your on going support is to those of us who have been sick for more than 25 years. What in the world would all of us do without you and certainly people like Kim. Please express to her my ongoing THANK YOU. I will be eternally (my life time !!) grateful…

Sincerely,

Jeanie

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nita June 4, 2009 at 10:15 am

I’ve lived 32 years with CFIDS. It is tragic that the CDC has wasted millions on the same, old, tired, research that those of us who have had the disease for a while KNOW is very OLD NEWS INDEED! Repeating the same research will bring us no closer to a healthy life. The leading edge research and action of the European countries have left the CDC breathing their dust. It’s time the CDC jumped to the leading edge instead of remaining in last place!

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Mary Wygal Murphy June 4, 2009 at 12:30 pm

Thanks so much…..For all you do and will do……
Can we get some pictures and info up on Facebook….
I haven’t seen anything….I’ve done a little on my own but ,
I’m not techy so it is not professional looking…..I would be
glad to help if I can at least where I am….Whatever I can do…
I live in OKC,OK area……

I am a patient but have my good days….Would love to have
a good cause to use them for… Please use me….

Mary

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izyaleo17 June 4, 2009 at 8:18 pm

I have lived with this desiese for the past 25 years and I agree that it is tragic. But beyond tragic is the fact that the government doesn’t care. This is the most powerfull country in the world! It is the year 2009! We have progects to go to Mars! We help other nations in trouble! We worry about people in undeveloped countries……Those are all very noble cauces, indeede. But what about our own people? How come the government doesn’t care about it’s own people! It is outrageouse! And how long will we all play this game? The game of cat and mouse! How much longer will we be polite and aplogetic? I think we all have been there and done that. It is tragic that 25 years later we have achieved so very little! From the bottom of my heart I am gratefull to all the good people that are helping us with this terrible desease.But I feel that something else has to happen, something else has to be done. This shouldn’t be going on like this forever. There is no reason for this! The government officials have no right to push us arround like this and we THE PEOPLE have the right and the power to let them know that this is unecceptable!

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cort June 5, 2009 at 2:30 am

I agree completely. It’s an outrage – an absolute outrage! I didn’t really know how bad it was until I started looking up the facts…but when I did it made me boiling mad. Government studies show that this disease is common, that disability rates are very high and it costs the economy an enormous amount of money (@20 billion dollars a year) and yet is funded like it is a rare, minor disease. Excema got a bigger boost in funding than the entire CFS budget! They spend a hell of alot more on excema than they do on ME/CFS.

The medical branch of the federal government has decided to ignore CFS. Here’s a good one; asthma costs the US economy about half what ME/CFS does but the NIH spends about 300 million dollars a year on asthma research…they spend 3 million dollars a year on ME/CFS research. The government doesn’t give a damn about you or me. They’re throwing chump change at this disease.

The thing is that this could go on for the next 20 years. I feel like I know how it’s going to go. The government will keep on feeding researchers scraps and the researchers will keep very slowly building the science and eventually they’ll discover something that no one can ignore and the money will start pouring in – absolutely pouring in. But when is that going to happen? 5 years? 10 years? 20 years? So long as we continue on this petty pace it could take decades.

Because thus far the science and the statistics haven’t made a bit of difference we need to go the political route. The politicians could turn this thing around in a heartbeat. You could probably quadruple the budget for ME/CFS on what they spend on accounting in major diseases.

This is why we have to continue to register our complaints and most importantly make sure that our professional organizations – the ones that do have healthy bodies and can advocate – are strong. Look at what the CAA did – they only have a few 1000 members. According to CDC estimates at least 200,000 people have been diagnosed with CFS in the US. (Where is everybody?). The CAA and IACFS/ME need to be strong.

You know what’s the worst thing? Everybody’s mad at the CDC – the NIH is in just as bad if not worse shape! It’s just terrible over there. That’s for another blog.

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Mark O'Brien June 4, 2009 at 10:44 pm

“Thank you” Cort and Kim doesn’t even seen like enough, but again THANK YOU! I’m 30 and have two other chronic illnesses, but have been sick with this for about four years, so I’m still new to this, though it seems like it’s been a lifetime. I try to do what I can like the grass root e mails and try to read when I’m able. Although sometimes it feels like I’m only surviving day to day, those grass roots emails, surveys, and all the other helpful information and links that the association provides gives me a sense that in some small way I can contribute and that’s empowering, which leads to leads to hope. However, I could fill out surveys and read every day, but it takes people like you to go to the CDC, be on the front lines cut through the politics and hold people accountable. (things we are not able to do, and others would rather not do) I greatly appreciate that you are standing up and fighting for those of us who are not always able to do it for ourselves. It’s truly you, and others like you, who give the rest of us living with this illness hope.

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Heidi Bauer June 13, 2009 at 3:24 pm

Hi Cort. I was wondering who the guy was over there writing all the notes at the meeting. Nice to see this blog. I was unaware of it. I appreciate the work you are doing to continue spreading the word. I’ve tried to become more involved in advocacy, but at points it seems like nothing I do or say will help. It’s the many voices that will eventually be heard. I’m wondering if it’s going to have to come from the private sector though, as in the Peterson Institute.

I have incredible respect for the work CFIDS.org has done. They have my full support. My hats off to the advisory committee too, though. They keep at it. They argue and take time away from more pleasant matters to also advocate for us. I spoke with Nancy Klimas for the first time at the meeting and thanked her for her support and work. When researchers like Dr. Klimas invest their time in a disease like CFS/ME, you know the ability is there to make breakthroughs. It’s just incredibly frustrating to see the lack of funding for the large scale experiments that need to occur. I’ll keep doing what I can. Thank you for being part of letting me know the facts, and for encouraging us all to keep at it. Cheers!

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Carol Sweatland July 5, 2009 at 4:47 pm

Hello Cort, Just wanted to express my gratitude for all that you do along with the CFIDS organization. I was just diagnosed with CFS in August 2008 after being very sick for over 2 years. I am so thankful that I found out about CFIDS.org and how I had an opportunity to get support from them and connecting with people on facebook. I’ve been trying to be an advocate by at least filling out the e-mails that have been requested by CFIDS.org to voice our concerns about the CDC’s 5-year research plan. I was surprised recently to have a phone message from Congressman Dale Kildee’s (Democrat-Michigan) office in Washington stating his support for CFS and that he had received my e-mail. His office stated that I can return the phone call and I plan on doing that. The message came when I was not home and by the time I was back we were into the 4th of July holiday, so will call tomorrow, July 6th. Just wanted to let you know maybe those e-mails will be of help. Since I’m fairly new to all of this, I have been reading the articles you have posted along with others, so I have good information when I make the phone call tomorrow. I would not wish this disorder on anybody. The isolation that comes with it makes it extremely difficult. Although it’s a struggle to get up everyday, I thank God for the ability to do it and for the health I did enjoy. Thank you again for being there for us.

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cort July 5, 2009 at 8:18 pm

Hey Carol. Thanks for all your nice words and good luck with the Congressman! Love to hear how it goes.

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