Awareness Day ... it's more than just knowing the letters C.F.S.

The latest ad for the medical group that doesn’t know the first thing about CFS touts their research into "everything from AIDS to Autism".

Or as Dorothy Parker described Katharine Hepburn, "the gamut of emotions from A to B."

They may be researching everything from AIDS to Autism, but what about Bacterial Meningitis through Zulu Fever?

At least they’re honest that their expertise is limited to only those diseases beginning with A, and does not include things further down the alphabet, like CFS or fibromyalgia. So maybe they learned something from my complaint that advertising "innovative treatment" was false advertising when they were stuck on a single treatment that had long since been proven totally useless – hardly innovative treatment for CFS, even 20 years ago!

But they’re still running the equally false ad insinuating that their doctors consult a whole university of other experts, "because the last thing [a patient] wants to feel is alone." What I felt under their care was Very Alone. If there was a clinical trial that might help me, that’s how I had to find it: alone. They weren’t going to provide me with one shred of information about diagnosis, prognosis, or the newest treatment. If I wanted any information, I had to find it alone, and if I didn’t feel up to spending hours researching because my health had deteriorated too far under their "care", too bad for me. My doctors didn’t consider it their responsibility to find out what might help me when their favorite treatment failed; they considered their responsibility complete when they scolded me for being an uncooperative patient for stubbornly refusing to improve when given pills for a condition I didn’t even have.

I recently received the following e-mail:

The following link to an article written by Rick Vassar entitled "How Good Are Your Drugs?" was an enlightening article that many patients may be interested in viewing. The link to the article is: http://blogcritics.org/archives/2007/04/25/222959.php

The article was forwarded to me from a nonprofit that seeks to promote the best practices to prevent medical error called Prevent Medical Error.

For better health,

Gail Kansky

President, National CFIDS Foundation, Inc.

Readers Digest this month had an article about medical errors with some frightening statistics about their frequency. www.mothersagainstmedicalerror.com want to prevent any other family from losing a loved one to medical error. But there are other types of medical errors besides those that result in death. Some of us are sentenced to a "living death" because of medical errors that didn’t kill us but nonetheless forever changed our lives.

The more people who speak out against medical errors, the more likely steps will be taken to avoid medical errors in the future. As long as doctors are human, there will be medical errors, but there are ways to reduce the number. Listen to what the patient says; don’t substitute what you "think" she meant. Don’t diagnose by stereotype. If you don’t believe the patient, verify with other sources – the doctors who thought I just didn’t want to work would’ve learned otherwise if they’d talked to my bosses. If what the patient said didn’t make sense, ask questions to clarify – don’t just turn things around in your head till you come up with a timeline that makes sense. If the patient isn’t improving with the treatment you’re giving, figure out a new diagnosis or a new treatment – if that requires listening to what the patient suggests or spending a little time researching, swallow your pride and admit you don’t know everything.

Unfortunately, CFS/fibromyalgia patients are likely to be affected by medical errors. Doctors aren’t clear how to diagnose them, so people who have CFS/fibro are told "it’s all in your head" and people who don’t wind up with the diagnosis because the doctor knows just enough about the diagnostic criteria to be dangerous. Patients are told "there’s nothing we can do for you" – there are things they can do, what they can’t do is give you a single pill to cure all your symptoms. Doctors give out standardized medical advice "exercise your way back to health" without being aware that a CFS patient who exercises may wind up permanently disabled, or try to fix a severe sleep problem with simple solutions like "regular bedtime and wake time", without understanding that some cases of insomnia are rooted in pain or biochemistry – if it started while the patient was employed and observing a strict schedule, it’s not going to be solved with a strict sleep schedule.

Tags: CFS, fibromyalgia, malpractice, treatment, disabled, exercise, sleep, biochemistry