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.
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