The CDC has announced that it's looking into chronic fatigue syndrome (ME/CFS) subgroups in the hopes of improving treatment options, discovering the underlying physiology, and nailing down a case definition.
If you're familiar with the CDC's history of ME/CFS research, you might take this announcement with a massive grain of salt. You might also be tempted to spit at your computer screen and utter a few choice words. However, this time, things just might be different.
For those unfamiliar with CDC-ME/CFS history, the organization has focused on one psychological and "biopsychosocial" factors while ignoring the physiological. Patients, advocates and ME/CFS researchers have long called for change and believe the CDC has done considerable harm to research efforts by muddying the waters with their approach and with an alternative case definition. Suffice it to say that it's been a long, ugly fight.
So why is this CDC study different? Instead of using its own researchers and its own definition of the illness, CDC is going through seven ME/CFS specialists and their treatment centers. These aren't fly-by-night or biopsychosocial centers, either - they include Nancy Klimas' Center for Neuro-Immune Disorders, Charles Lapp's Hunter-Hopkins Center, and Dan Peterson's practice in Nevada. (Again, for those who aren't familiar with these names, these are some of the top researchers into the physiology of ME/CFS and they've spoken out against the CDC's previous research.)
As for the controversial inclusion criteria, the CDC says anyone diagnosed at one of these seven centers is eligible - meaning they're using the clinical definitions of the doctors who actually know what they're doing.
Why Subgrouping is Important
ME/CFS research, even when done well, is plagued with inconsistency. A treatment appears promising in one study only to be found ineffective in another. Nothing seems to work for a substantial number of people.
Many researchers believe the reason for this is that the term ME/CFS actually covers multiple similar but separate illnesses that each need their own treatment approach. Researching them all in one lump doesn't account for these different subgroups, which means it's all doomed to finding nothing conclusive.
The belief is that, by defining subgroups based on physiological differences, research will start to provide better answers. We could identify treatments more effectively, and we should be able to get a better understanding of what's behind the illness(es.)
Here's more information from the CDC: Multi-site Clinical Assessment of Chronic Fatigue Syndrome.
Let's hope this is a change of direction for both the CDC and for the millions of people who need answers about their illness.
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It was exciting when Obama actually said the words “chronic fatigue syndrome”, but disappointing that he didn’t mention anything about primary juvenile fibromyalgia. However, there is a lot of overlap between the illnesses, and it is my hope that inquiry into CFS might produce information relevant to fibro treatment. I share the DEEP frustration along with others that all the fibromyalgia research seems to focus on how wonderful therapy is — cognitive therapy, physical therapy. When the patient tries therapy and does not improve (as nothing was ever done to resolve the underlying illness), the doctor then blames the patient . “Well, you must not be doing it right”.
This new study by the CDC is promising, in that it appears to be looking at some of the physiological markers of the disease, which can include, for fibromyalgia, blood pressure issues, cognitive issues, sensory issues, gastrointestinal issues, glandular swelling, changes in muscle tissue, genetic markers, and on and on. At least some of these seem to overlap with CFS. There is so much physiological evidence, it has been deeply frustrating not to see a greater effort to fit the puzzle pieces together, to get a more complete picture.
Sorry Adrienne but the link is inaccessible to me…. I’m in the UK….. could you offer any alternative access points ?????
Guide Response: Sorry about that! The CDC site is back up, so the link is updated now. ~Adrienne
Sorry, but I’ll believe it when I see it at the local physician level. I have run into almost none who actually believe that fibromyalgia, CFS, etc exist. Because it hits women in such higher numbers, they don’t even consider ti as anything other than a neurotic disorder. Even if they don’t say so up front, those who don’t believe it exists don’t look you in the eye when you bring it up and change the subject.
Until they identify some sort of biomarker, lab test or whatever, that screams fibromyalgia as a the only differential diagnosis there are many medical dinosaurs out there (overwhelmingly male) who will continue to blow us off. As a former ICU nurse, I’ve worked with legions of them and they train the new ones in their ways.
If they really want to “be in the hunt” and not be religated to the sidelines or worse blamed as a culpret for the years of suffering and by what I am sure history will label them when the truth does one day come out I would assume they do need our trust. If you have any contacts there I would suggest an apology would be the first order of the day. I know I personally would not be interested in any studies directly involving the CDC until one is forthcoming. I know there is a new regime there but at the same time we were wronged by not just a hand full of doctors but an institution the was supposed to provide answers for just such as we are experiencing. On the “first do no harm” scale they are now sitting at about a -20, up from a -150 when I was first diagnosed with this condition. An apology is the very least I expect before I will ever even consider them a positive force in our future cure. Am I bitter? Yes but I have grown old suffering from this disease. If the cure were to be found tomorrow I might not see it implimented in my lifetime.
I think we will seeing many more illnesses like CFS with synthetic foods and vitamin deficiencies – Hope someone realizes the seriousness of CFS!
Nitalynn, I have reached a point that I’m beginning to doubt I’ll be around when and if a cure comes along. I’m 72 years old and I’ve had CFS/FM since I was 38. I also have developed arthritis, MCS, diabetes 2, pelvic prolapse, high blood pressure and cholesterol, low thyroid and lots of other symptoms that have left me about 95% disabled over these last 34 years.
I have to use a wheelchair when going to my medical appointments, and in the last couple of years, I’ve had about 15 appnt’s. and two hospitalizations. Incidentally, the CFS/FM had a sudden onset, flulike and I developed diabetes in spite of the fact that I wasn’t overweight or obese. I am 5’4” and weighed 153 when diagnosed, now weigh about 140.
The CDC stuff sounds like a positive step but it’s too late to do me any good I’m afraid. I’ve been waiting since 1978 for help.
We need some investigation into structural anomalies of the neural tube, and a careful look at all the problems that can cause a myelopathy – or disorder of the spinal cord. Neurosurgeon Robert Bray has recently been discussing something called T.E.A.M. – basically an anomalous growth of blood vessels in the thoracic spine that reduces blood supply to the spinal cord. It does not show on usual MRI. It seems to predominate in women, and he says it may not rare. Check out his site.
This is awful. There are no CFS subgroups. There are separate illnesses. They are desperately trying to hide the problem they created when they invented CFS.
Not like AIDS or various cancers or MS are subgroups of fatigue (CFS) is it?
If people dont have neuroimmunological abnormalities they cant have ME.