Saturday, October 10, 2009

It's the virus, stupid

Since A. arrived a week and a half ago, I have awakened each morning to his succinct report of the most interesting news story of the day such as the latest creepy cop video on Reddit or the most recent Obama capitulation to the Republicans or the insurance industry.* But Thursday when I woke up he said that there was no news, nothing at all interesting to report.

"So today, October 8, 2009 will be the day forever known as the day of no news," I joked.

But alas, it was a huge news day for ME/CFS patients. As I turned on my laptop and read that Dr. Judy Mikovits, the hero of this post, had found the retrovirus that may well cause ME/CFS, I teared up. From relief that the retrovirus was finally found. From hope that maybe I might soon get my life back. From anger that I might have a virus I could be passing to my boyfriend and the government agency charged with understanding and informing us about communicable diseases -- the Centers for Disease Control -- has spent the last quarter of a century doing little to figure out what exactly has been making us so sick.

For the last few weeks I've been plodding through Hillary Johnson's tome, Osler's Web, which details the history of ME/CFS, what the Whittemore-Peterson Institute is now calling X-Associated Neuro-immune Disease (XAND) or more informally I.T.V.S -- It's The Virus Stupid. From the very beginning of Johnson's narrative an unknown retrovirus plays a prominent role. Indeed two weeks ago I spent my Saturday night reading about retroviruses on Wikipedia and whatever else I could find on Google, so I was actually rather prepared for Thursday's announcement. I already knew that there were only two other known human retroviruses, HIV, which causes AIDS, HTLV, which causes types of leukemia and lymphoma. That retroviruses integrate themselves into the host's genome by inserting itself into DNA, making them impossible for the immune system to clear and wreaking havoc in the process.

True, we can't yet say that XMRV is the cause. A part of me is still afraid to celebrate as there have been so many possible breakthroughs in the past that have turned out to be, at best, anemic. But then, we've never had a study with someone like Frank Ruscetti among the study authors, one of the nation's top cancer researchers who used to work with Robert Gallo, a co-discoverer of HIV. We've never had a journal as prestigious as Science treating ME/CFS like the serious, debilitating illness that it is. We haven't had skeptics like molecular biologist John Coffin go from doubtful to proclaiming “they will be celebrating in the clinics where these people [with CFS] are being treated.” And while the Science study may be small (101 patients), Dr. Judy's group developed even more sensitive tests after submitting that paper that have found XMRV in 95% of 300 ME/CFS patients as well as 500 patients in the UK.

Not that it has impressed the guy at the CDC who should have found this virus, as this paragraph from NatureNews suggests:

William Reeves, principal investigator for the Centers for Disease Control and Prevention (CDC)'s CFS public health research programme, says the findings are "unexpected and surprising" and that it is "almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS".

An illness like CFS? That psychosomatic, "mind-body condition" Reeves has been studying by looking at whether patients were abused as children and were making themselves sick by feeling too much? Yes, I can see how these findings were "unexpected and surprising." I mean, it's not like the man who heads the Chronic Viral Diseases Branch at CDC should have actually thought an illness like CFS would be viral in nature.

But like a cruel, corrupt, and ultimately inept warden who is suddenly caught out by the authorities and the inmates turned over to more competent hands, one can only hope that William Reeves and his pals Peter White and Simon Wessely will fade into the shameful history of ME/CFS/XAND as Dr. Judy and her lab find what patients and a handful of doctors have suspected all along: it's the virus, stupid.

_________________________
*It took me several minutes to believe him when he told me Obama won the Nobel Peace Prize as I was sure it was a joke. But that's a subject for another post.

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10 Comments:

At 2:29 AM, Anonymous Anonymous said...

You link to to the Independent (500 patients UK). Can you just believe that last paragraph?
-quote-
"However, other researchers emphasised that the numbers published so far are too small to conclude anything about the cause of chronic fatigue syndrome. "It's spectacular but needs replication. And I hope that no one is thinking of prescribing anti-retrovirals on the basis of this," said Simon Wessely, professor of psychological medicine at King's College London. "It's very preliminary and there no evidence to say this is relevant to the vast majority of people in the UK with the condition."
-quote-
I have never officially been diagnosed with depression, but I have lost count the many times psychiatrists in CFS ref centers and doctors have prescribed anti-depressants, because it is the standard treatment for CFS. I tried it few times but it makes my condition worse, so now I refuse it. They messed up my dossier so I lost disability. People like Wesseley may stick their opinion where the sun doesn't shine.

 
At 6:15 AM, Blogger Laurel said...

Beautifully said, Michelle.

 
At 11:44 AM, Blogger cinderkeys said...

Yeah. The chutzpah is amazing. I wish Wessley and crew would go to jail for their abuses. We'll have to settle for their relegation to the dustbin of history.

The Whittemore Peterson Institute has been open for what, a year or two? And they've just accomplished in that time what the CDC could not or would not in 20 years.

 
At 2:41 PM, Blogger Jigsaw Analogy said...

on the one hand, i'm very happy that there's definitive proof this thing is real. (i've been having fantasies of getting blood test results and waving them in the face of the doctors who told me i was depressed or just needed to get out of the house more.)

on the other hand, it's scary to realize that just because they (hopefully) found out the cause, or at least a clear diagnostic test, doesn't mean we're anywhere near a cure.

that said, i'm very glad i stopped donating blood after i was diagnosed because i was concerned it might be blood-borne. and feeling a little guilty about the possibility of passing it on before i was diagnosed....

 
At 4:30 PM, Blogger Cuphound said...

Congratulations on this major breakthrough! And I'm clueless about Obama too.

 
At 2:37 AM, Blogger KatherineStarr said...

I think any step, however small, along the road to a definetive cause and cure is great. Gets ones hopes up that one day i'll be rid of this awfulk illness.

 
At 10:33 AM, Anonymous rachelcreative said...

Great post in reaction to this news. Oh my I hope I hope I hope. My own reaction mixed like yours. But mainly it's hope. And knowing that there are treatments on the market which would likely have good effect. But ... early days.

 
At 1:51 PM, Anonymous Anonymous said...

Hi Michelle,
Thanks for your post on the PDX CFS site.
Perhaps with the discovery of the retro virus there will be sufficient public concern to fuel real research for tests and treatment.
Many thanks for your great work on our site for soooo many years!!
Sara M. LO
In my brain fod I lost my sign in info.

 
At 2:31 PM, Anonymous Anonymous said...

Broad-Brush Agenda Posted for Oct 29-30 CFS Advisory Committee Meeting - Will be Webcast Live
October 18, 2009
CFSAC Agenda - October 29-30, 2009
U.S. Department of Health and Human Services
CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE
Meeting
Thursday, October 29, 2009
9:00 a.m. to 5:00 p.m.
Friday, October 30, 2009
9:00 a.m. to 4:00 p.m.
Room 800, Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201


http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html
HHS has posted an agenda for the CFSAC meeting in Washington DC, this Thursday & Friday, Oct 29 & 30, 2009. Detail is sparse, but many suggest this event may mark a new chapter in ME/CFS research, and the world is invited to watch it all, live.

To Access and Print the Agenda… www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html

The Event Will be Videocast Live on the Web…
Starting at 9:00 Thursday EDT (at http://videocast.nih.gov/)
For the time where you live, use the World Clock Time Zone Converter

To Prepare in Advance for Viewing the Archived Videos…
• You will need to have RealPlayer installed, and you can download the latest version in advance at http://videocast.nih.gov/faq/#software
• You can test your computer and network connection at http://videocast.nih.gov/BrowserTest/

Topics Clearly Indicated in the Agenda…
• Dr. Daniel Peterson, MD, from the Whittemore-Peterson Institute, will give a presentation starting at 10:15 am on Oct 29 on “XMRV Association with CFS.”
• Dr. David S. Bell, MD, will Speak on “CFS and FII/MBP” – the issue of suspected “fabricated and/or induced illness in children/Munchausen by Proxy” as it relates to ME/CFS - at 3:30 pm
• Three public comment time slots, two on day 1, the third on day 2.

Several Time Slots for “Committee Discussion” are Listed for Both Days…
Though no topics are specified. Of particular interest, especially given the XMRV research, will be the CDC’s 5-year CFS research plan, which reportedly is to be discussed in this meeting, and possible announcement of new CFSAC members to replace members who will step down in January. The retiring members are scheduled to make brief comments at the close of day 2.

 
At 2:33 PM, Anonymous Anonymous said...

http://www.meassociation.org.uk/content/view/1042/161/

Wistar Institute, Dr. Elaine DeFreitas, and the Cheney-Bell-DeFreitas Work: Startling Revelations from Wistar's World Patent and Serious Reasons for Concern Now Revealed!
By Alan Cocchetto

 

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