From the Wastebasket to the Inbox; Progress in Chronic Fatigue Syndrome (ME/CFS)

February 24, 2009

Posted by Cort Johnson

Dan Moricoli, the creator of the CFSKnowledge and the me-cfsCommunityCenter has just posted a fascinating account of his recent discussion with Dr. Nancy Klimas, a prominent ME/CFS researcher and physician. It seems that researchers are much closer to cracking some significant problems than we know.

The one essential problem in ME/CFS is finding a biomarker – a unique test result that differentiates it from other diseases. How important is finding a biomarker? From Dr. Klimas:

“Just think for a moment, what it would mean to the millions of sufferers of ME/CFS if any doctor could run a test which would clearly, indisputably identify the patient as having the disease, EVERYTHING CHANGES.”

A Wastebasket Diagnosis No More?A Medical Wastebasket. Until that’s done critics will always say that CFS is nothing but a medical wastebasket that doctors throw patients into when they don’t know what else to do with them. The problem is that with its vague definition ME/CFS is a medical wastebasket at this point. Just talking to a few patients will quickly clear up that point; some experience post-exertional malaise, some don’t, some have alot of flu-like symptoms, others do not; some are wired and tired others are just tired. There could be an underlying core condition present but the branches emanating off of it are so vast and entangled that it’s hard right now to make what is.

Not Easy. Finding these subsets, though, requires large studies that throw a lot of different tests at the patients in order to see which groups emerge. Gene expression studies are doing this by examining the activity of every gene in the body of every patient in the study (!) Dr. Klimas is very excited about the potential from these studies. She obviously has some inside knowledge here, as nothing published yet warrants this kind of enthusiasm. Still, according to Dr. Klimas researchers are hot on trail of from three to seven ‘different conditions”

“There are at least three, perhaps even seven, sub-groups of what we call ME/CFS that are currently under intense research focus. They ay be thought of as three to seven different conditions with closely related symptoms. As we identify and conduct more focused research on each of the sub-groups even more bio-markers will be identified and treatments developed over time”

These groups of patients are not branches off the same tree; instead they have entirely different conditions – diseases, really – that manifest themselves in a similar fashion. This means that ME/CFS patients may look the same on the outside but inside them are from three to seven entirely different processes churning away, and each will need a different kind of treatment approach.

What is needed is money – not an extroardinary amount of money – but money that ME/CFS researchers have found hard to come by. Dr. Klimas estimated that about $2 million dollars a year for the next five years would do the trick. That’s chicken feed for virtually all major diseases and it’s alot for ME/CFS but it could very well be doable.

Dr. Klimas is excited; she has, in fact, been making somewhat similar statements over the past year or so. What can we expect if she’s right? The first thing we should see are some published studies that set the research world on fire. We’ll keep an eye open for them.

For more on Dr. Klimas’s work click here.

Read Dan Moricoli’s Blogpost

Check out the CFSKnowledge and the me-cfsCommunityCenter.

3 comments

{ 3 comments… read them below or add one }

Monte Conrad February 28, 2009 at 10:54 am

This is a terrific blog.

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Michelle February 28, 2009 at 5:18 pm

I’ve been a long-time reader of your Phoenix-CFS site and am thrilled you’ve started a blog as it provides a lot more interactive environment. You’re so on my RSS feed, and when I ever get around to updating the blogroll on my blog (just posting on a regular basis has been a challenge), this is definitely going to be there . :-)

Dan’s conversation with Dr. Klimas was indeed exciting. As for the published research that warrants Dr. Klimas’s excitement, I would think Jonathan Kerr’s work would be, at least in part, fueling a lot of that speculation as his research has suggested there are seven different “branches” of ME/CFS. Given that it sounds like some Japanese researches have been reproducing his work (can’t be bothered to look up a link at the moment, though I imagine I probably heard it from you anyway ::grin::) and that Suzanne Vernon seems to be focused on gene expression studies, I would think that there are a handful of published studies to merit her excitement.

Maybe some of that money the NIH is getting will find it’s way into ME/CFS research, especially as, relatively speaking, we don’t need much to finally get our biomarker.

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Cort March 6, 2009 at 6:28 pm

Thanks Michelle – I love your blog! I just don’t know about this gene expression stuff but I’ll just have to take her word for it. I’m still waiting for the big whammy from Dr. Kerr- I just don’t get it yet; hopefully I will soon.

I hope to God you’re right about the NIH – its about time.

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