BFFs Dr. Jay Levy and Dr. Daniel Peterson have penned a disappointing, ho-hum retread of the ME saga—you know, the serious disease that no one takes seriously?—in tomorrow’s LA Times. There's Levy’s worn-out theory about immune reactivation as the culprit (presumably perpetrated by Levy’s mysterious hit-and-run virus), and the multiple-cause hypothesis, which is often proposed when the actual cause isn’t known. The duo even suggest a better name for CFS: CFIDS! Uh, gentlemen, didn’t we try that once before?
There’s some weird distancing in the article when it comes to the XMRV Science paper, on which Peterson was a coauthor: “The most dramatic example [of theorized causation] came two years ago when a group of researchers reported finding a mouse-related virus called XMRV, a pathogen in the same family as HIV, which causes AIDS. They believed they had identified this virus in the blood of a several patients with chronic fatigue syndrome, raising the hopes of patients everywhere.”
The op-ed piece finishes with the patients being frustrated and more research dollars being needed—fair enough, except that had I read the article knowing nothing about ME, I wouldn't think the disease was particularly serious, but I would think that the patients were kinda whiny.
It’s one thing when Amy Dockser Marcus of the Wall Street Journal dashes off this kind of piece—she doesn’t see patients all day every day. But why would Dan Peterson, who understands this disease in every pore of his being, present ME this way? Why not talk about the patients in wheelchairs, the ones with heart failure and seizures, the ones who can’t stand up, the ones who are too weak to wash their hair or walk to the mailbox, and the ones who have lost their lives to this disease, so the public and researchers can begin to grasp just how disabling ME can be? Why not tell the truth?
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Apparently Dr. Jay Levy and Dr. Daniel Peterson think that the fact that I am suffering from ME makes me stupid as well as sick. Do you think they would try talking down to healthy people this way? I don't think so. I have been sick for 25 years now, and I heard all of this before. If they want to get my attention, they are going to need to do some actual thinking and come up with some actual new ideas, not recite simplistic retreads from 20 years ago.
ReplyDeletePatricia Carter
The "overactive immune system" hypothesis doesn't really fit the epidemiology of CFS outbreaks, including the one in Incline Village. If "some people's" immune systems are prone to "over-react" to how can one explain how a whole town of people get sick all at once and stayed sick. Certainly those people aren't related and wouldn't share the same pre-disposition to this "over-reaction". Its more more likely that the simple explanation of they caught a common agent from each other is the right one–and that their immune systems aren't over-reacting, they are reacting to the ongoing infection.
ReplyDeleteThe public needs a better understanding of ME/CFS and this is a good primer. No, it doesn't tell the whole story but it offers a lot of information about what the illness is and isn't. And the vast majority of research demonstrates XMRV is not causal. An outbreak can be caused by exposure to a common agent and is not necessarily spread person-to-person.
ReplyDeleteLevy and Peterson have done a lot of good work and will continue. They get it.
It's great they said there needs to be way more funding, but overall I give this article a thumbs down. The article mentions "chronic fatigue patients" which is extremely stupid coming from someone who has been a central figure in ME medicine for almost 30 years! It also seems a little cavalier, and as you mentioned misleadingly detached, about the XMRV science.
ReplyDelete"Why not tell the truth?"
ReplyDeleteI went 3 months this summer without taking a bath or shower or sponging off. I brush my teeth about every 2 weeks. My husband washes my hair about every 2 weeks. He also has ME, but fortunately not as severe as mine -- yet.
I live in a nice house and have nice clothes, but I live like a homeless person. I don't have the energy to get dressed or change my pajamas.
I am losing my vision and I have chronic thrush and fungus infections on my scalp and skin. My dentist said that I have signs of chronic Epstein-Barr infection on my tongue (called hairy leukoplakia).
It is getting harder and harder for me to digest or eliminate my food. My blood pressure spikes to above 200 for a while and then it drops. I have joint, muscle and nerve pain, but I cannot tolerate any pain killer except Advil.
My level of an inflammatory marker called Ca4 is 5 times normal.
You would think that doctors, scientists, and government officials would be more concerned about this illness since they and their families could get it too.
The viruses the Lombardi group discovered are human gamma retroviruses. Silverman got it wrong, gave them the wrong name. Same thing happened with HIV. They got that wrong at the start too, called it HTLV-III. They the rollover 10 years to clone the HIV virus that the French isolated first. Lo and Alter made the same finding. Both are polytropic, but Lomardi group did also prove infectious and immune response.
ReplyDeleteMikovits slides on Jaime blog show no VP62 plasmid contamination when samples left the WPI or NCI, but Silvermans are contaminated with the plasmid. They have also never been sent the plasmid by Silverman and never had it in house. Which means we have solid evidence these retroviruses are involved in ME/CFS.
And we know Coffin has voiced rediscovery. So we will be fine. Thank you WPI!
One asks oneself why this LA Times piece is appearing now, given that it contains nothing new.
ReplyDeleteMost likely it was written by a public relations firm or similar entity and these two doctors allowed their names to be put on it.
What is a BFF? There are more respectful, articulate ways to call someone or something even a complete fraud or failure, lest express disagreement. Then there's the kind of vile that's being used against the CFS, autism, and Lyme communities by Wessley, et. al., Science (consider their lighting up of Dr. D-J), etc. Yes, people are watching, and we're looking more and more like a psychiatric fringe bunch not worth publicity or a career investment. Please don't follow this track.
ReplyDeleteDrs. Levy and Peterson are just like everyone here. They are entitled to their opinion - and given their background and education it has considerable credibility. That doesn't mean patients aren't credible only that patients are the experts on their own experience not necessarily the science.
ReplyDeleteAs for being wrong, that's the entire point of science. Science is all about being wrong and then being less wrong and hopefully less wrong after that. But everyone is wrong at some point.
And just for the factual record the common cold and hepatitis are examples of multiple pathogens causing a disease. You don't have to like it, but it doesn't make it any less true because you don't.
Once again, Anonymous, vile is an adjective. :/
ReplyDeleteYou are right, Mindy, to point out that the article was typical in downplaying severity.
I think everything we do as advocates needs to emphasize severity.
I want Peterson back in the tent. Or for the politics to be laid bare.
To "Anonymous September 30, 2011 5:06 AM":
ReplyDelete"And we know Coffin has voiced rediscovery."
Source?
Oh FFS it means Best Friends Forever, but you couldn't be bothered to look that up that harmless acronym before disrespecting Mindy and the patients who are upset with this blatant misinformation on top of the hate campaign that the weasel instigated, just right after the publication of the ICC which of course did not get any publicity.
ReplyDeleteMindy has rightly commented on this disappointing ho-hum retread of what the CDC usually gets away with, knowing that patients are suffering from this hate campaign and that Levy and Peterson's dated misinformation has only added to our suffering. Its particularly shocking coming from Peterson, who was aware that the outbreak he first encountered in 1984 was another outbreak of WHO accredited neurological M.E., that the pathology indicated brain and immune dysfunction, that a retrovirus was the most likely pathogen, and that the invention of CFS was to cover up these financially inconvenient facts (inconvenient to the CDC & the notorious insurance companies).
Its one thing being attacked and undermined by the psychiatric cabal, but when its coming from a respected M.E. doctor who has had a falling out with WPI, its only fair to question why he is throwing us under the bus of mysterious, unexplained, chronic fatigue syndrome, which most readers will understand to be AIYH. We are back in 1984, and so is this poorly written article. Yuppie flu strikes again, nothing to see here, move along folks.
MEtruther
@ anon 256pm
ReplyDeleteBFF = Best Friends Forever.
Your neuro-cog symptoms are showing ;-)
One has to wonder with these mainstream articles how much content is lost on the editor's desk.
ReplyDeleteI was disappointed, like you that they did not convey the seriousness of the disease. If Dr. Levy and Dr. Peterson want to research the theory that this is an overactive immune response perpetuated by an initial "common" infection... then do so by all means!
ReplyDeleteBut it comes across as "sniping" to me the way the description of the researchers who found the virus and the patients (I think I am aware of maybe three, such a multitude) trying an antiretroviral...
Also, like you if I "knew absolutely nothing" my impression would be that: "these people are ill, but it is not extremely serious, they are also very whiny "
Personally I'm inclined to give them a pass since they are not professional writers and one shouldn't expect them to capture the situation perfectly with prose. I'll take good research over fine prose any day.
However, I can't escape the creeping feeling that there is a lot of ego and 'bad blood' that is still clashing together and that everyone seems to want "love on their terms" rather than a spirited discussion and robust research funding. It comes across as people thinking like they can't succeed unless the other guy/gal fails.
Honestly it feels like this is a race that is conducted (at slow speed) with most people trying to trip the other runners up rather than run ahead of them with better research!
Thank-you Mindy, it's disappointing... the time to put egos aside and come together was twenty years ago... it still hasn't happened?
How many more people will die?
ReplyDelete"...and the multiple-cause hypothesis, which is often proposed when the actual cause isn’t known..."
ReplyDeleteMindy, if you knew anything about the disease, you'd know it's clear that there are indeed multiple causes. Why don't you interview Rich Van Konynenburg, just as one example. His hypotheses is helping people get better.
when i was treated by dr. peterson for me/cfs - i got the distinct impression he was jumping on a bandwagon he thought he could be the posterchild of. this is an egomaniacal man looking to make his bones and be remembered forever - for anything! i could never put my life, or trust, in his hands, nor could i participate in any action that elevates his obvious fame-seeking behavior to the level of other famous physicians who have been instrumental in curing the myriad diseases being identified these days.
ReplyDelete