Phoenix Rising Team submitted a new blog post:
From the Wastebasket to the Inbox; Progress in Chronic Fatigue Syndrome (ME/CFS)
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 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.
Continue reading the Original Blog Post
From the Wastebasket to the Inbox; Progress in Chronic Fatigue Syndrome (ME/CFS)
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 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.
Continue reading the Original Blog Post