OT: Attn Karen C (CFS in the news)

Apr 21, 2006 4 Replies

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Susan Hartman 20 years ago

On All Things Considered this morning (4/21) there was a report about Chronic Fatigue Syndrome, that 14 papers have just been published about the disease and they've identified some common factors that make it identifiable as a specific disease.

The study model was interesting: Find a bunch of people with the disease and poke and prod them for a few days and gather every tiny bit of test info and number-crunch the results. It's yielded 14 papers out of four research groups who were supplied with all the raw data. It's a model they may repeat for other diseases.

Sue

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Heather in NY 20 years ago

Thanks Susan, you beat me to it. Very interesting to me (I've got a friend who went through hell to get her diagnosis) was the fact that they have found 5 specific genetic sites that have an impact on developing CFS. (No one site causes it, but all five are clearly indicating collective causality from what I read.) Becky can't wait to rub it in to the "don't believe it exists anywhere other than the mind" doctors next time she hits one... Heather

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Jere Williams 20 years ago

Ah yes, all in your mind. I saw an ENT doc once who told me it was yeast.

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Karen C - California 20 years ago

Thanks, Sue.

I had gotten the CFIDS.org press release about it, but haven't had time to read the actual papers yet.

My "VP of Research" excerpted one that confirms CFS is as disabling as MS or COPD. That alone should help. However, "VP for Political Action" sent me a quick e-mail that he's not happy with them, but I haven't had time to discuss what it is that he's not happy with ... I have another 3 days of trial to proofread before I can start my weekend.

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Jangchub 20 years ago

no doctor has ever told me it was in my mind, however, FMS, CMS are both syndromes, not diseases and certainly not degenerative, which is criteria for being a disease.

My doctor has explained to me that the WAY I perceive pain and/or energy levels is not processed by my brain the way others process pain or fatigue. It doesn't mean it isn't there, it means that because of a mind/body connection with the cause and effect, the brain can amplify pain and fatigue.

I am doing this year long horror story Infergen now. I have so little oxygen in my blood that I can't lift my arms for more than 20 seconds. I can't stitch, walk, go food shopping, shower, clean the house, read, or do any of the things I love doing as a homemaker. I am taking Procrit injections once a week now. I took my fourth shot on Wednesday, but I see no energy boost. It can take six weeks for the bone marrow to respond to the Procrit and start making red blood cells, which are hovering at a blood count of 7.

Fortunately, the treatment is only 48 weeks and I have already done 8 weeks. Yay.

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