Thursday, January 07, 2010

XMRV in CFS Update

Busy, busy day today - our cleaners came this morning (which means a frantic picking-up so they can find the floors to clean!), grocery shopping, and friends coming over for dinner. Whew. I'm lying down now, trying to rest up for dinner, but I just couldn't wait another day to post some XMRV updates because CFS is in the news headlines again, only this time, they're very misleading.

You may have already seen the headlines trumpeting, "XMRV virus not found in UK CFS patients." I've seen this splashed all over the internet the last few days. Fortunately, both the Whittemore Peterson Institute (WPI) that did the original XMRV research and the CFIDS Association (CAA) and were quick to send out press releases explaining this new study for us lay-people.

What CAA and WPI both say is that the UK study is flawed, that it did not use the same selection criteria for patients as the WPI/Cleveland Clinic/National Cancer Institute study, that they did not use the same laboratory methods to test for XMRV, and that they rushed to publish their results without any review, so the results are basically meaningless.

One of the main researchers of the UK study was Simon Wesseley (plus two of his close colleagues) who is well-known for proclaiming that CFS is psychiatric, that it can be cured with Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET), and for choosing study participants with revised CFS criteria in order to prove his own theories. 'Nuff said.

You can read for yourself the statements from the CFIDS Association and Whittemore Peterson Institute (this one is a pdf file, so click on the press release link in the right column under Breaking News). Both are very enlightening, though they can't stop the mainstream media from splashing the misleading headlines all over the place. One UK news organization posted their daily reader quiz today as "Do you think ME is a real illness?" I'm sure it's not the last time we'll see tabloid-like news on CFS. Fortunately, letters of protest are flooding out almost as quickly as the headlines, though certainly some damage has already been done, particularly in the UK.

On a brighter note, the XMRV study (the original one) made several best of 2010 lists:
Also, WPI says that several drug companies have already approached them regarding anti-retroviral drugs to use against XMRV in CFS (hopefully, there is something already on the market that will work).

It's easy to let this latest PR setback get you down, but I'm keeping faith that good science will prevail, and 2010 will bring more good news (maybe even treatments?) for CFS!

3 comments:

  1. I'm with you, Sue. There will be challenges but the important thing is that they keep forging ahead. Hope is a strong thing.

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  2. Actually I'm not too upset by this. There needs to be a number of studies done before an impartial review can see a pattern. People here (especially health professionals) are fairly wise to media bias and bias in clinical trials and studies. One study is not enough to prove a link, and one other study is not enough to refute it.

    But thanks Sue, for giving us the background as it seems clear that there is a strong hidden agenda behind the UK study. I'll be doing a bit of investigating of my own today if I can find the energy.

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  3. Thank you for this summary, Sue, and I hope you start feeling better soon.

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