CFSAC Pt I – The Art of Evasion

November 2, 2009

Posted by Cort Johnson

It was as if someone had transported the CFSAC committee to a different planet.  Down from their small perch on at top of the building into the main lobby with the banks of lights shining  down and three cameramen following their every move one wondered if this might be what the future looks like. 

The people who followed the proceedings got a taste of everything; the stirring science, the banal presentations by the ex officio’s, the piercing questions by the CFSAC members, (the not so piercing questions), the powerful presentations by the patients, the Orwellian government speak, the mind numbing rules. It had everything, good and bad, that our federal government can offer.

The Art of Evasion – If the future was upon us it was hard to tell from watching the first part of the meeting. Watching the government officials (‘ex-officio’s) as they tried to simultaneously express their agencies deep commitment to ME/CFS while explaining away their agencies miserable efforts was numbing. 

SSA - The first presentation by the Social Security Administration was quickly forgotten in the excitement of the day but it well demonstrated how easily a professional bureaucrat can reduce well meaning professionals to irrelevance . The CFSAC – fed up with the SSA’s tardiness at answering some questions – hammered the SSA representative at the last session making him look ludicrous. This time two new SSA’s reps showed up and effectively  nixed  the possibility of another experience like that by using all their time reading long prepared statements – a tactic that the Committee is hit with frequently and desperately needs to learn how to counter.

HRSA – Things were no better with HRSA.  The HRSA representative offered to dialogue with the Committee about the process of creating and disseminating clinical guidelines on ME/CFS only to be reminded by Dr. Klimas that she’d proposed that a year ago and that the IACFS/ME was ready to produce them for the HRSA anytime they could use them.

NIH – One had the feeling listening to Dr. Hanna of the NIH that one was in the  wrong room or in some sort of time warp. It was almost as if the XMRV finding had never occurred. She somehow thought that the creation of a ‘WIKI’ website for researchers would – in lieu of research funding for XMRV –  stir up some excitement. That announcement, understandable, fell as flat as a pancake.

Remarkably the head of our NIH research program almost forgot to mention that a major grant offering for ME/CFS was in the works - but for 2011. At that point Dr. Klimas got that kind of whacked in the face with a shovel look and asked what the CFS Research program at the NIH was doing to take advantage of the excitement generated by the XMRV finding NOW? Precisely nothing. Dr. Hanna explained that the CFS research program is not working on NOW – its working on a year and a half from now.

Like almost everything the ex-officio’s say her statement was both true and false. They are in the 2011 budget process now but its also true that  when the NIH really perceives an opportunity is present it finds a way.  We’ll see that the NIH is finding a way with XMRV but the program that Dr. Hanna runs is not; it is as usual, more than a day late and a dollar short – our CFS  Research program is completely irrelevant at this point of the game.

It got even worse. RFA’s are big deals; they add a considerable amount of money to the field and last one we had was in 2005.  Dr. Hanna actually started talking about this one  6 months ago. As she went through the steps required to produce the RFA it was clear that nothing has been done in the last six months and this grant  opportunity still existed in Dr. Hanna’s head only.

It brought to mind the last RFA which fell 2 years behind schedule and only got done after the CFID’s Association got Senator Harry Reid to put the hammer down on the NIH. This is not all Dr. Hanna’s fault – the structure of the CFS Research program at the NIH is a recipe for tardiness and inaction – but she has, nevertheless, been stunningly unproductive.

See Teflon Woman at the NIH

CDC – Dr. Miller of the CDC was in the hottest seat of all as he struggled to explain his chief investigators remarks about the XMRV paper. Dr. Snell and Dr. Jason asked him what he thought of Dr. Reeves first discrediting the WPI’s results (and the Science journal!)  and then openly stating that he didn’t think the CDC would replicate their results. He explained them by saying nothing about them and reiterating the agencies commitment to ME/CFS.

Collaboration or Not? – Later I asked him about the CDC’s effort and he became quite impassioned about the need for everyone to form a consortium in which they all worked together and shared data and samples, etc. But what Dr. Reeves I asked? Dr. Reeves didn’t send a single investigator to the three day Banbury brainstorming session on ME/CFS at Cold Harbor over the summer. Oddly enough the Banbury Meeting was the first step in the CFID’s Association forming – yes – a International Research Effort on ME/CFS that will require standardized testing, sample and data sharing, etc.

Still Business As Usual – Dr. Miller said the CDC never would have ignored that meeting if he’d known about it. He seemed sincere but that brought up the question, though, of how out of the loop he is regarding a program he’s supposed to be overseeing. Kim McCleary said the CAA had sent the invitation to his boss.  Either he got the invitation or he ignored it. Whatever the case it’s clear that despite the enormous amount of criticism Dr. Reeves program has received  that its still largely business as usual at the CDC.

It’s hard to jive that conclusion, though, with Dr. Miller’s statement that the CFS program actually gets alot of scrutiny within the CDC. Every program at the CDC gets a five year internal review but the CFS program gets yearly internal and sometimes external reviews - a strange commitment to a program who’s budget is shrinking dramatically almost every year. If the CDC cares enough about a program to review it every year why wouldn’t they spend some money on improving it? Could it be that they have no interest in improving it? That the constant reviews aren’t there to help the program but are there to kill it if possible? Or is it just that the CDC, like the NIH, doesn’t have a clue what to do with their CFS program?

Hillary Johnson’s latest blog containing excepts from a CDC message board indeed suggests that the CFS research program faces harsh critiques from the inside as well as the outside. In truth the individuals making up the CFS research program at the CDC have never deserved the rap given their boss.  Dr. Reeves from the beginning made himself the  soul voice of the program but chats with the programs researchers revealed researchers much like you find elsewhere – interested and absorbed in the science (not the politics). 

New Faces in Town – The news from the traditional research groups was nothing if not disappointing.  The XMRV story is much bigger than anything the CFS research field in its present state is able to cope with.  Next up we’ll take a look at XMRV itself and the extraordinary effort underway by researchers new to this field to get their hands on this virus.

Next Up: XMRV in the Spotlight

13 comments

{ 13 comments… read them below or add one }

sharon November 3, 2009 at 4:56 am

The DHHS/CFSAC people have put out the video from the two day meeting (29/30 Oct) on their website for viewing. You can see Dr. Dan Peterson’s brilliant presentation as well as all other comments, etc. But Peterson’s presentation is the one part I have gone back to and listened time and again. Peterson and Mrs. Whittemore were the HIT of the two day meeting. Miller indeed took the hits for Reeves but Reeves DOES work for Miller and the boss should know what’s going on with his own people, right?
I hope that this is not going to be more “business as usual”. NOT with this new cancer-causing virus out there making people crazed and trying to see if it has impact on other cancers and diseases in addition to CFIDS. And then there is the nation’s blood supply – oh my!
Good work on the meeting notes and observations Cort. As usual, realy well done.
Also, hit the http://www.cdcchatter.net for new stuff they posted. They did not put the old comments back out there but there is a new article that is well written and has tons of CFIDS sick comments on it. Not CDC people from what I can tell, but us sick folks.
At least the CDC Webmaster was honrable enough to put that out there.

Launch in standalone player Air date: Thursday, October 29, 2009, 9:00:00 AM
Time displayed is Eastern Time, Washington DC Local Category: Advisory Boards Description: The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS).

Wanda K. Jones, DrPH
CFSAC Designated Federal Official
Deputy Assistant Secretary for Health – Women’s Health

For more information, visit
http://www.hhs.gov/advcomcfs
Author: HHS Office on Women’s Health (OWH) Runtime: 480 minutes CIT File ID: 15408 CIT Live ID: 7908
Permanent link: http://videocast.nih.gov/launch.asp?15408
http://videocast.nih.gov/summary.asp?live=7908

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John November 3, 2009 at 7:03 am

“The XMRV story is much bigger than anything the CFS research field in its present state is able to cope with.”

I think this is a big issue. CFS researchers have been looked down upon by their colleagues for being fooled by a bunch of malingerers just like CFS patients themselves have been looked down upon for our copious amounts of ‘malingering’(see- retroviral infection). Now XMRV is the hottest thing going, so it is understandable for CFS researchers to want to revel in the limelight. However, CFS was created as a research definition only, remember? It was supposed to last for 6 months or so until the cause was figured out then a more appropriate name would be established. Now twenty years later the cause has been found. It is time for CFS to be taken out back and shot. CFS is a rotten little shanty with a leaky roof and sheetmetal walls and just as you said, the grand hall of XMRV will not fit inside. What we need now is to find the quickest and most expedient way possible to eliminate each and every single ‘CFS’ research program and establish brand spanking new XMRV research entities.

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cort November 10, 2009 at 6:56 am

Good points. I think if XMRV works out that is basically what will happen. The field will change enormously – a new cadre of experienced researchers will basically sweep the old guard aside; research labs in major universities will take us on; the CDC will have to change enormously (the HIV folks will take over there (?). Lots of changes – if it works out.

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Khaly Castle November 3, 2009 at 7:48 am

The way I see it, we are at a crossroads. We have choices to make, and the time is upon us to make them. Maybe we should declare ourselves XANDERS, and walk away from the entire CFS mess. Let them continue to try to psychologize their CFS chimera. If Dr. Peterson wants to call this disease XAND, I’m okay (for the first time) with the name change.

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John November 3, 2009 at 8:16 am

It’s just weird. Major CFS orgs like the CFIDS Assoc. and the IACFS/ME can’t change their name all of the sudden lest something happen and XMRV not be the ‘holy grail’, but places like the NIH and CDC can open up new XMRV entities and shouldn’t it be an extremely high priority for CFS patients, the CFIDS Assoc, IACFS/ME and all the CFS clinicians, researchers and advocates that have spent the past twenty plus years by our sides in the trenches along with us to advocate for these entities? CFS just isn’t where it’s at, XMRV is the place to be! Let’s get out of this hellhole!

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Priscilla November 3, 2009 at 1:29 pm

What a good blog! It is a pleasure to find such crisp writing on a subject of much importance to me.

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Keith... November 3, 2009 at 5:43 pm

I think it would be premature to change the name of CFS to having anything to do with XMRV right now. There are too many unanswered questions about this virus and it’s relationship to our illness. While we have put up with CFS for far too long caution is needed. There could be a considerable amount of people who have CFS/ ME that don’t even have XMRV. What happens to these people if the name is changed to XAND. Are they left to dangle in the wind even more marginalized. I think scinece needs some time now to sort the answers out about XMRV before a name change having to do with the virus is advocated for.

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cort November 10, 2009 at 7:00 am

That’s a big problem. Some people are going to be left at the margins and they will get less attention than before and have LESS clout. That’s the dark side of the XRMV ‘miracle’ – the people who are going to be even more disenfranchised than before. On the other hand separating the XMRV from the non-XMRV patients should be able to help them in the lab since there won’t be two subsets one research study anymore. Of course we wait to see just how fundamentally important XMRV is.

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Heather November 4, 2009 at 3:06 am
T Dunne November 10, 2009 at 3:39 am

Kort keep digging and widen your horizon CDC does not come to conclusions on its own it is a much bigger picture Think of all who are involved in this I can think of at least 3 more and they all influence one another Think Europe

Also dont forget the other XAND’s who are in the net

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Erik Johnson November 10, 2009 at 9:29 am

We’ve already been down this path of “subsets” before… so we know what happens.
“CFS” itself came into existence as a “CEBV Syndrome subset” that Dr Cheney and Dr Peterson could not diagnose with chronic EBV, for the amazingly simple reason that some patients did not even have it.

Yet creating a “CFS subset” of CEBV Syndrome did not result in the honing-in on the phenemonen that one would expect from science. Rather, it was the exact opposite.
The prototypes for CFS were excluded from their own syndrome as a rogue subset.

The original purpose of CFS was to investigate the ways this illness did not fit the parameters of CEBV Syndrome. Read the 1988 Holmes proposal to create “the chronic fatigue syndrome”. It’s written right into the charter.

But instead, the research into “CFS” was continually reverted back to the inappropriate “all encompassing umbrella” paradigm, and the VERY reasons for the creation of CFS were perpetually shoved to the side as a scarcely relevant “subset”.
It it weren’t for the Whittemore-Peterson Institute, it is very clear that this is how things were intended to remain.

That is what “subsetting” did for this “mystery illness”.

Now that it appears that the original CFS subset of CEBV Syndrome has found a retroviral reason why this debacle was set in motion, I can’t understand why anyone who watched this process happen would want to plunge themselves back into the “medically unexplained” garbage bin that doctors used CFS for.

It seems to me that if anyone had an illness similar enough to meet the Canadian Criteria, but did not have XMRV, they would surely want to insist that since their phenomenon is unexplained, but CFS has already been resolved by XAND, they should have a completely different and DECENT name for their illness to use for medical and research purposes.

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Khaly Castle November 10, 2009 at 10:01 pm

Erik said,
“It seems to me that if anyone had an illness similar enough to meet the Canadian Criteria, but did not have XMRV, they would surely want to insist that since their phenomenon is unexplained, but CFS has already been resolved by XAND, they should have a completely different and DECENT name for their illness to use for medical and research purposes.”

Bingo. Exactly what I’ve ever so lamely been trying to say. Thank you for saying it so well!

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meghan Shannon November 15, 2009 at 11:11 am

Cort said, “That’s a big problem. Some people are going to be left at the margins and they will get less attention than before and have LESS clout. That’s the dark side of the XRMV ‘miracle’ – the people who are going to be even more disenfranchised than before.”

NOT TRUE. You missed what I presented to the committee regardomg the diagnostic codes and why “fatigue” could not be used. I also said, that there were many ways to diagnose someone who is ill, I gave the comittee the Paper work from Social Security that showed how people were getting their disability. And it sure was not with the use of the name CFS!!

Having a name for a disease does not leave those who do not fit the exact criteria behind. Having a virus marker like HIV and now XMRV/XAND does not get you disability benefits and or help for being ill.

This kind of mis understanding of disability with disease processes is how people are frozen in fear, it is how CFS was able to be used by the CDC to stop research and help for people who are sick.

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