Focus

For weeks Ive been livid whenever I think about the recent XMRV study published by the CDC. The part that has me so riled is that 50% of the patients, or cohorts had not even consulted a physician. 50%!

These patients do not have CFS as I know it. These patients arguable do not have CFS at all you know how I know? Show me their patient files wait they dont have any!

I assume that these patients are suffering with some form of exhaustion or post-exertional malaise, and my heart goes out to them. But when I got sick, I consulted seven doctors within the first year. There was nothing else to do. I had unsuccessfully tried to continue working, ignore it, even exercised to exhaustion thinking that I could somehow work it out. Within months I had quit my job and began to spend entire days in bed. The CDCs first criteria about the patient having severe chronic fatigue for a period of at least 6 months applied entirely to me.

I have found a similar pattern with most other CFS patients. They all seek help from a doctor they are too sick not to. So the fact that the CDC would begin a CFS study utilizing patients who had not even consulted a physician makes me furious. There are so many of us (a minimum of one million Americans by the CDCs own estimate) that surely the researchers could have used documented CFS patients.

The new word Ive learned from this experience is cohort. Apparently not all CFS patients experience exactly the same symptoms. And as CFS patients, we know this. I have met patients who, like me suffer from post-exertional malaise, but unlike me, they complain far more about muscle and joint pain. I experience flu-like symptoms, nausea and head-aches. Still, the disease we share is called CFS, or maybe, fibromyalgia. Doesnt that seem odd?

I would expect the CDC, more than any other agency to focus on the fact that CFS patients have fairly glaring differences in the way they experience CFS. This seems like a potentially important detail. There ought to be a concerted effort to better define CFS cohorts from one another. Possibly one of the problems with finding XMRV is that the virus is more prevalent in some CFS cohorts than others.

I dont want to tell professional researchers how to do their job, but as a patient it is infuriating to see such sloppy science. Doctors often recommend their patients get a second opinion and the CDC researchers must have known that documented patients would be far more credible to the study than those who had not yet sought professional help. It makes the researchers appear disconnected to the actual facts of CFS. It is as if they have bought into the myth of the name and wrongly assumed that somebody who is really tired must be a Chronic Fatigue Syndrome patient.

I am heartened by those researchers who are working hard to untangle the mysteries of CFS. Those folks give me hope. The CDCs paper invites doubt and discouragement. Unfortunately it also epitomizes the long fight of CFS patients to be taken seriously by the medical community.

As CFS patients we are forced to find out for ourselves how research is progressing, what medications might help, or how certain treatments worked for someone else. With CFS it is common that the patients have an edge over their doctors. For too long the medical community all but ignored CFS patients we have been forced to stand up for ourselves when standing was the hardest thing to do.

When I go to my doctor today, the appointment frequently begins with him asking me, What have you heard? He knows that the network of CFS patients online is oftentimes better informed than the professional medical community. In some ways this makes me a better patient. It forces me to understand to the best of my ability, my condition and what I can do to treat it.

But my hope is not to be so much a good patient as a good healthy person. I wonder if the researchers at the CDC fully appreciate the real, life-altering, debilitation that is CFS. Im looking for answers to CFS. Is there anyone at the CDC willing to help me out?

Comments

Well said, Liz,

I couldn't have put it any better.

Having read so many CFS stories & lists of symptoms on this website alone, I couldn't imagine anyone with ME or CFS or FM not having a long list of medical appointments & tests to relate.

Even before I'd ever heard of CFS or FM, I had long lists of chiropractor, physiotherapist, doctor, scans, x-rays appointments. I don't know how many times I thought I'd never survive another long night of excruciating pain back in 2003, 4, 5.

Chronic Fatigue is a very different state of health to Chronic Fatigue Syndrome.

I cannot possibly imagine anyone feeling as much pain from FM as I have done over the years & not seeking medical advice (let alone the other symptoms).
 
Great blog. It makes me furious too that public health officials are doing such sloppy science. However, I do strongly believe that change is coming.
 
Victoria,
Thank you for the feedback. You echo the experience of so many CFS patients... How is it that we as patients seem, at times, to have a better grasp of CFS than the researchers?
 
They do this alot. They will conduct "studies" of CFS patients which usually consist of making phone calls to random people and asking them if they are tired. Then they tell them, they must have CFS and there's the study.

Or they invite people who have only been diagnosed with fatigue and nothing else to participate in all kinds of studies and then claim whatever they want to for whatever study, when those people do not have real CFS/CFIDS/ME/Fibro/Lyme or anything else. They're just working three jobs and chronically tired from it. But then they include those non patients in every study for everything. It's not real science. It's faking studies to get their grant money.
 
Carrigon,
You make a valid point, and it continues along the same lines of CFS being forever misinterpreted as merely "fatigue". I know from reading your recent blog that you're feeling terrible today. Go lie down! We can discuss this later.
 

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