Finally, after waiting for what seems an eternity, the NIH State of the Knowledge Workshop list of speakers has been posted. As I scroll through the two-day agenda, I find many pleasant surprises as well as a few unpleasant not-so-surprises.
The conference has a powerful kick-off. Anthony Komaroff and Leonard Jason start, delivering speeches on the clinical presentation, diagnostic criteria, and clinical definitions of Chronic Fatigue Syndrome.
Of note:
I am very happy to see Harvey Alter as co-moderator for the infectious diseases segment. Ron Glaser will be there to represent EBV, John Chia will tackle enteroviruses, and Judy Mikovits will cram a ton of information about XMRV into 20 minutes. Bringing up the rear is John Coffin, to hopefully tell us that he realizes that “recombinant” and “contaminant” don’t mean the same thing.
The CDC is sending their representative, Magalathu Rajeevan, who will tell us about genomic studies. Although the very sound of those letters…”CDC” has come to cause a kneejerk reaction of imminent nausea, it’s nice to see them on the agenda with something to say other than “stress-related-to-childhood-abuse”.
Benjamin Natelson is on board. Dr. Natelson recently gave us the study that showed the differences in proteins in the spinal fluid of CFS patients, Lyme patients, and healthy controls.
Post exertional fatigue is getting a strong representation, as it should since it is The Hallmark Symptom of this disease. Kathleen Light, Christopher Snell, and others will make presentations on their research into the subject, and orthostatic intolerance is getting a good presence as well.
Many names well-known to the community appear in the diagnosis and treatment segments of the conference. Nancy Klimas, Fred Friedberg, Lucinda Bateman, and Dane Cook all make appearances, among others.
Now, this is where it gets a little bizarre. Kim McCleary will kick off the second day after-lunch segment with a speech on communicating. Of all the topics for her to speak about…and of all the people who may have been chosen to speak on this subject…I cannot imagine a worse match. There are many other subjects McCleary could have spoken about…funding and research come to mind. There are many more qualified speakers to address the subject of “communicating”. But communicating is one of the things that McCleary is miserably bad at, as evidenced with years-worth of documentation.
But the follow-up team looks good. Kenneth Friedman will talk about the impediments to research, and he has a knack for driving a point home. His presentation should be well-worth watching.
Our patient representatives, Pat Fero and Mary Schweitzer, will follow Friedman’s presentation. Pat will talk about CFS from the perspective of three generations, and Mary will talk about the role for the internet in communication. I’m really hoping that she will address the need for agencies and media to use the internet in the way we suggested in our petition…to bypass the CAA as a source for information.
I suppose it was to be expected that the final summary would be co-moderated by Dennis Mangan and Suzanne Vernon. It only seems a given that the CAA would insert themselves this way, as an officiating presence at a meeting of this magnitude. I sincerely hope she learns something.
CFS Untied
Do you know whether this conference will be webcast? That is such a wonderful technology for those of us who are not able to attend these meetings.
Marcia,
At the NIH site, under Registration, it says that this meeting will be videocast during the event, and available afterward for on line viewing.
https://www.infinityconferences.com/InfiniBase/Registration/RegEnd.aspx?ptguid=bf17bb1b-7df8-4ba5-b7a0-ba91edfbd56c
is the link, from the NIH State of Knowledge web page with the list of speakers.
Looks like a very good line up to me.
Sarah
Use this link, on the day. I don’t think you need to pre-register
http://videocast.nih.gov/summary.asp?live=10098
Thanks for the preview, Khaly.
How bizarre that Kim is talking about communicating; think she’s going to say they haven’t been doing it correctly? HA! Doubt it. Bet you a soda she flubs this one up, too!
I shall be glued to my headset Thursday and Friday. Hope you are able to, also! Enjoy! So glad Mary and Pat are going to say a few words; nervous excitement galore!
We will be busy afterwards, dissecting every word, no doubt.
Extremely happy to see patient experts Mary Schweitzer and Pat Fero on the agenda. Ken Friedman on obstacles to research is a great choice; he has written on this extremely important subject before very well. Not very happy to see Dr. Vernon in a ‘summing up’ role. Let’s see how she does.
Kim McCleary speaks on communication. hahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahah!!!!!!!!!
Khaly,
Why would you want Harvey Alter anywhere near a discussion of the State of the Knowldege of chronic fatigue syndrome. Did you see his presentation at the NIH’s seminar: Demystifying Medicine – Chronic Fatigue Syndrome: Is there a virus?
http://videocast.nih.gov/summary.asp?live=10012&debug=0
First, Alter’s knowledge about chronic fatigue syndrome is out of date. He admitted that he has not kept up with the literature.
Most importantly, Alter highly praises the work of Stephen Straus, who he said was his mentor. This explains why Alter thinks that chronic fatigue syndrome is a psychogenic disease. Alter said that the only effective treatments for chronic fatigue syndrome were cognitive-behavioral therapy and graded exercise. Alter said that all other treatments were unproven and that CFS patients were very responsive to placebos. This is not even Alter’s idea. Alter is just repeating what his mentor believed. Alter quotes on slide 62 from a 1994 article by Straus:
“Many therapies have been tried in CFS but only cognitive behavioral therapy and graded exercise appear to produce meaningful benefit.”
Notice that by using the phrase “appear to,” Straus is saying that studies of the therapies had not demonstrated statistically significant effectiveness. So, according to Straus, in 1994 CBT and GET were also unproven. But scientific facts have no effect on Alter’s thinking. He readily touts the proof of the recent, flawed PACE trial.
Alter is firmly in the mainstream school that is sure that chronic fatigue syndrome is a psychosomatic disease. He even plays the coy game of not stating this outright, only referring to it. This is so he will not have to defend himself.
Psychosomatic theory is not scientific. Anyone who believes in it should not be allowed to speak at a scientific conference, just as people who believe that CFS is the result of alien abduction should not be handed a microphone.
You’re confusing Dr. Gill for Dr. Alter.
Dr. Alter’s the guy we want there. If it were Dr. Gill a lot of people would have had plenty to say about it.
Could you please correct the two references to the year 1994 in my previous post to the proper year 2004?
Thank you
Thanks for another great post. One correction or point of consideration – we need to get our act together. Post exertional fatigue is the hallmark – of the disease? Which one? CFS is not a disease but a collection of symptoms. Post exertional malaise is not a hallmark but is optional – i.e., not required for a diagnosis. It is a feature of ME. So what is this workshop? This workshop is a muddle of ME/CFS, another made up term that can mean different things. ME/CFS will further bury ME under the CFS rubble. Our representatives? Mary is talking about internet communication. This has to do with what? Patients need to keep speaking up when the groups and advocates do NOT represent them.
Re: PEF; ME/CFS; Internet Communicaton
The “muddle” began in the 80s when our “illness” was not taken seriously and we were left to struggle on our own. After 26 years I still struggle when forced to go beyond my envelope of energy and suffer with “post exertional malaise.” It is something that must be taught to diagnosticians.
Re; Int. Comm – how we (patients) get our information about anything relative to our “disorder.” We need one good web site that acts as a hub for everything related to what we deal with since our symptoms vary so much from person to person. And also because the severity of our illness varies as well. Right now one hub is Co-cure and there are others, we need one for those who are too sick to search.
We’ve been bypassing the CAA for a long time out of necessity, so now is the time to bring order out of chaos.
Re: ME/CFS – The accepted term for our illness – I say accepted because no vote has been taken that I know of. My doctor, Charles Lapp, M.D., announced years ago that he was adding ME to the equation….and he did. His intention is to drop CFS eventually. It should have been ME all along if the CDC had been doing their job back in the 80s. I can’t speak for everyone – only myself and those who are represented in our local support group. We wouldn’t quibble – there are more important issues about ME/CFS that need to be addressed.
PS: Khaly….thank you so much for posting this information.