Dr. Reeves produced the five year plan for the CDC’s CFS research team. He was in his element. He seemed sincere and open; patients think of him as something of an ogre but you’d never get sight of that in his presentations. Kim McCleary later noted that he’s a master at the art of presentation. But one suspects that he’s masterful in the way that many government officials are. They’re always very nice but it’s often difficult to get a straight answer to a question.
The standard MO for dealing with an issue seems to be to give a history lesson. So when someone asked about the efficacy of the empirical definition Dr. Reeves spent 10 minutes going into depth about what is and how it came. He’s not stating anything anyone doesn’t already know but the answer eats up time and ends up deflecting the original question. The only way to stop this is directly interrupt the monologue and re-insert the question – which few people are willing to do.
Dr. Reeve’s presentation on the draft strategic plan was a classic example of this kind of this deflective technique. Although it was supposed to be on the next five years much of it simply went over the CDC’s accomplishments of the past 10 years another good chunk of it focused on how the plan was developed. Only a small portion was actually devoted to what it consisted of. Both Kim McCleary of the CFIDS Association of America and Dr. Glaser expressed frustration at the lack of specifics in Dr. Reeve’s presentation.
The CDC: Overhauling ME/CFS
The external review panel wanted the CDC to lead the field with regard to treatment and an international research network and by god they’re going to try to do so. The next year the CDC is going to insert itself into three huge issues; how to treat this disease, how to define it and how to create an international research network. They are going to do that by conducting three international workshops.
On the face of it the workshops suggest that the CDC has gotten the message, hammered again and again over the last couple of months, that it needs to collaborate more. But as the CFSAC members made clear in the past the CDC’s has had a different definition of collaboration than the rest of the field.
The collaboration issue was hit again and again by the CFSAC members and it goes to the heart of what some researchers believe is wrong with the group – that they’re not interested in other peoples work and are out of touch with a good chunk of the field. The panel was always polite but they made it very clear that the research community has had it with the CDC’s ‘collaborative’ efforts of the past.
The CDC, for instance, ‘collaborated’ during the early stages of the Empirical definition and then turned its back on the rest of the field and developed the actual definition by itself. Dr. Oleske went so far as to say that the CFS research program was an outlier in its own agency in its unwillingness to play well with others.
“For some reason you (talking to Dr. Reeves) would rather have a paternalistic relationship with other investigators… This is so out of character (with how the rest of the CDC operates). It seems like chronic fatigue is treated differently than any other disease at the CDC…We (the research community) want to be involved in an open relationship with you”.
Dr. Klimas, the past President of the IACFS/ME and a current board member made it very clear that she expects the IACFS/ME to be ‘a full partner’ with the CDC – not someone who simply signs onto the process and gets patted on the back. She, for example, wants the IACFS/ME, to be involved from the ground up in the development of the workshops. She noted a lot of talent people who feel they’ve been shut out by the CDC would love to work with them (for free) and that the CDC is missing out by not utilizing their talents.
The Acid Test – the Three Workshops
We’ll quickly see how serious Dr. Reeves, who several times noted the need for better communication from his group, is about collaborating. The workshops are a rather bold move to address fundamental questions about ME/CFS; if a wide range of viewpoints are incorporated then they’ll work out well. If the CDC handpicks the researchers as they have in the past they’ll simply further divide the field.
The IACFS/ME is currently in the middle of creating its own treatment guidelines – leading to the very distinct possibility that we could end up with two very different treatment guidelines. (We already have two physician education programs!) . If Dr. Reeves incorporated IACFS/ME positions into the treatment management workshop it would be a real boost for ME/CFS sufferers. But Dr. Reeves didn’t show any interest in collaborating with the CAA on the physician education program. Will he fully collaborate with field on treatment program? If he does he’ll have to accept some positions he hasn’t supported in the past.
Blunt Questioning – It’s hard to know exactly where Dr. Reeves stands on a range of issues and with the CFSAC’s help we got some idea today.
A Psychiatric Disorder? – When bluntly asked by the Rebecca Artmann if he believes ME/CFS is a psychiatric disorder he flatly stated no. He believes it’s a brain disorder but that the problems go both ways – the mind and body interact together - as they always do in chronic illnesses. He pointed to CDC work demonstrating abnormalities in the lower brain areas. I believe he’s telling the truth and the CDC research to date bears this out – they do not have a predominantly psychological orientation to this disease. The problem is that Dr. Reeves approach appears not to have much more than a mind-body answer to this illness.
CBT - What about CBT? Is CBT the answer for ME/CFS? Again, he said no – CBT only applies to a subset of ME/CFS patients and the CDC hopes to begin pharmacological trials of drugs for ME/CFS. The draft strategic report mentions Hemipherx (Ampligen), Cephalon (Provigil?) but the only treatment trial that is on the books is yet another CBT/GET trial. It’s got it’s own twist (brain scans) but we’re nevertheless the dealing with a product that has at best moderate results in some patients. The treatment toolkit at the CDC remains sparse and unimaginative.
We also learned that the relationship between Dr. Reeves and the UK was initiated by Dr. White coming to the CDC for guidance on ME/CFS. The UK, of course, has taken a strictly behavioral approach to this disease. As the CDC cut funding for pathophysiological work done by Dr. Klimas and the Dubbo they’ve reportedly continued to supply funding for the NICE trials. This suggests, of course, that in the mind-body scenario the mind plays the uppermost role in Dr. Reeve’s conception of this disease.
Herpesviruses - When asked by Dr. Glaser if he believe EBV or HHV-6 plays a role in ME/CFS he said that he believes it does in a subset of patients but he questions how large that subset is. He noted that in his studies 75% of patients have gradual not acute onset. He stated that he’d love to do those pathogens but that he doesn’t have the funds and that there were already talented people doing that. If he was given the funds, though, ‘he would be ecstatic’.
Yet Dr. Reeves had to be cajoled into attending the Symposium on Viruses and from what I could tell he disappeared from most of it. I asked him if he would be willing to collaborate with the Whittemore-Peterson Institute on their viral/immune subset and he said he would be and that they are moving in that direction now. Thus far the two groups have had absolutely no contact.
The Money – It’s true that Dr. Reeves doesn’t have a lot of money. It’s also true that relative to everyone he has ‘a lot of money’. The CFID’s Association is not making the claim that the CDC’s is doing ‘bad’ research but that it’s simply not doing good enough research. The fact that there’s little money to go around simply means what there’s needs to be used as efficiently as possible. The major player in this illness needs to be doing more than simply (slowly) filling in around the edges. No one’s getting any younger as we wait for the CDC program to produce.
A New Leaf? Or Too Little Too Late? Is this government speak or is Dr. Reeves serious about finally bringing the rest of the field in? After talking to her Kim McCleary was clearly not going to hold her breath on that one but we should learn soon enough when the Workshops kick off. Will the WPI’s ideas show up? Will the IACFS/ME be included in a fundamental way? Will new ideas show up in the final product? Or will the CDC attempt to manage the results as it did with the Empirical Definition leaving one portion of the field even more disenfranchised than before?
Or is it possible that the new more communicative, more open Dr. Reeves shown up too soon? The day after he left the CDC was hit with two more calls for his removal and this time it wasn’t patients that were doing the calling.