1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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FDA/NIH PAPER IN LIMBO; PATIENTS UNITE, by Mindy Kitei

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Mindy Kitei, Jul 6, 2010.

  1. boomer

    boomer Senior Member

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    There are other costs to the patient to. A person I know with cfs has a massage every week and sees an osteopath every week and also sees a physiotherapist every couple of weeks on an ongoing basis. This is not a luxury either - it's a necessity to deal with the pain and the tightened muscles. She sees a doctor almost every week over something- ear infections, yeast, headaches, sleep, depression, pain, etc. I swear we must have seen every type of doctor there is to try to figure out what is wrong. The costs to the patient are big.

    i remember when I was growing up - you almost never heard of people having massages. Nowadays, they are everywhere and I wonder if the growing number of people with cfs and fibro have contributed to the demands.
  2. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    Those numbers seem to make sense. They might be a little conservative. Or not. You can see that since our GDP is $13T, if 0.5% of the population were totally disabled by ME the loss is $65B per annum. But maybe a good deal fewer people than that are totally disabled.

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