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Conflicting approaches to CFS: Mayo Clinic goes "British"
Thursday 15 December 2011
The United States' prestigious Mayo Clinic has gone over to what some chronic fatigue syndrome (ME/CFS) patients, researchers and advocates consider the dark side when it comes to their approach to the illness.
What we have is 2 very different views of ME/CFS: the viral view and what's often called the biopsychosocial view. There's a ton of history behind both, but here's a quick over-view for those who aren't familiar with it:
Researchers in the viral camp believe that certain viruses or a combination of infectious agents cause ME/CFS, either by creating a long-term infection that keeps the immune system activated, or by somehow changing the immune system so that it's stuck in the active mode even when there's no current infection.
A wealth of research shows immune system dysfunction in ME/CFS. This is a major check in favor of the viral view.
However, virus after virus has undergone the scrutiny of medical research, and thus far none of them has proven to be the smoking gun - at least, not in studies published by what are considered respectable journals. (Some researchers have published papers in less respected journals, but the lack of credibility has kept the data from being accepted.)
In this view, anti-virals are often the preferred treatment and physical exertion is kept to a minimum because of post-exertional malaise, a symptom that causes people with ME/CFS to get worse with even moderate exercise or activity.
The biopsychosocial folks believe that ME/CFS is more psychological than physiological. Most of them concede to some physiological aspect - mainly that childhood abuse or other long-term stressors caused physiological changes in the immune system - but believe that people basically get stuck in "illness behaviors."
The favored treatment protocol of biopsychosocial advocates is generally psychological counseling (especially cognitive behavioral therapy) and graded exercise therapy.
This view has long been put forth by British researchers and also has been adopted by the CDC. Now, the Mayo Clinic has gotten on board.
Some ME/CFS advocates are urging people with this condition to avoid the Mayo Clinic because they believe the treatment approach will at the very least not help and that it could actually cause harm.
According to the Mayo Clinic website, it now recommends psychological counseling and graded exercise, along with medications for sleep and depression. What I found most interesting is that when it talks about antidepressant drugs, it only talks about depression, when in fact a good deal of research shows neurotransmitter dysregulation in ME/CFS without depression. The clinic appears to be ignoring that body of research and instead is stating:
The bit about sleeping pills is also concerning to me. It says:
This seems to disregard the fact that sleep does not alleviate the fatigue of ME/CFS and that we have good evidence of problems with sleep architecture. Yes, improving sleep is great and sleeping pills may help some people; however the suggesting that avoiding caffeine might be enough is ludicrous. Someone who is sleeping poorly because of a lifestyle issue like that shouldn't even qualify for the diagnosis.
Some research does show that talk therapy and graded exercise help a portion of people with ME/CFS, but critics have long charged that the research is of poor quality - which is pretty much what the biopsychosocial folks say about much of the viral work. Here's a detailed criticism of the approach, published recently by ProHealth: Data on harms done by CBT & GET therapies for ME/CFS.
My Personal View
So who do I think is right? If I have to choose one side, I'll go with the viral. In my opinion, the research is stronger there. I don't think this treatment approach will help everyone, though.
By the same token, I do need to acknowledge that some people are greatly helped by the biopsychosocial regimen.
Here's what I think: because we've got different definitions and different views of ME/CFS, I believe we're incorrectly labeling different conditions as the same thing.
Many of the top viral/immune ME/CFS researchers in the U.S. say several subgroups exist and that each subgroup constitutes a separate illness requiring specific treatment that won't work for the others. I definitely believe this is true.
Exacerbating that issue is that viral researchers are generally careful to exclude people with primary mental health problems from studies, while biopsychosocial researchers are not - in fact, a couple of studies (including the one mentioned in a 2009 post) have shown that CDC inclusion criteria are ineffective at separating ME/CFS from major depressive disorder. I think different groups of researchers are studying different conditions altogether.
What we need is for these guys to quit squabbling (which they've done for decades) and come together to critically examine the current body of work, do further work on subgrouping, and figure out who really belongs in what bucket.
For example, based on research I've seen, I believe there's a group of people with a chronic viral infection (such as Epstein-Barr), people with a combination of viral and/or bacterial infections (such as HHV-6 and Lyme disease), people whose immune systems are damaged by a hit-and-run infection, and people who have something possibly akin to post-traumatic stress disorder that causes immune-system dysregulation. Each one of these groups, and possibly others, would require a different treatment.
However, until we separate these people into appropriate subgroups, we'll never have strong research showing consistent dysregulation and underlying mechanisms or significantly effective treatments. How could we? It would be like lumping everyone with knee pain into one category without regard for whether the cause is arthritis, soft-tissue injury or a broken bone.
Have you had successful ME/CFS treatment? Was it from one of these camps or something else entirely? Did it just mask symptoms or get you back to being healthy? Leave your comments below!
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The above, with comments, originally appeared here.
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