arrow16 Comments
  1. Betsy
    Oct 07 - 3:25 pm

    Cort, when I read the heading I thought maybe somebody wanted our brains after we die. My mom gave her body to science and I have signed up with the same organization, but I’d rather it go to the study of fibromyalgia or CFIDS. Do you know of anyone who is doing this? Seems like it could really help the research. Also, did you see 60 Minutes last night? There was a segment on people scamming the government with false disability claims. Fibromyalgia and CFIDS were mentioned. They didn’t actually say that the conditions weren’t real, but suggested that people were using this diagnosis to falsely get disability, which some probably are, but too bad they were mentioned in that context.

    • Cecelia
      Oct 07 - 4:36 pm

      Re: Those who scam Disability using our diagnoses. This is the trouble when there are no accepted biomarkers yet. I heard a program on NPR about how Disability is the new welfare, the current way for unemployed or poor people to gain an income. A larger part of the story is the lack of enough jobs which pay enough for people to live on. Young people without an education geared for the marketplace and without a job history–what are they going to do? I expect more of them get a psychiatric diagnosis like Depression or an Anxiety Disorder or PTSD whether or not they have had these or if so, found them to be permanently disabling. But our conditions are also used, and we are going to suffer negative consequences due to public anger and even more medical scepticism.

    • Cort Johnson
      Oct 07 - 5:29 pm

      Jeez, that’s all we need – that’s why we need objective biomarkers!

      I don’t know of anyone who’s collecting brain tissue altho I think there would be many people who would love to provide it after they’re gone. I certainly would.

  2. Cheryl
    Oct 07 - 3:53 pm

    I called the University of Wisconsin to get more information about the study. It is not too far from Chicago. It requires about 10 hours worth of time over a 3 day period. There are no accommodations for meals or lodging, you are own your own at your own expense! There is very little of the information that they gather that they are able to give to patients individually. It will be done on a group basis. While I know and believe in the value of research, it is a high price to pay to gain little or no insight into our own personal situations. I hope that they are able to get a patient population from their surrounding areas so that people do not have to travel. They also expect 25 minutes on a stationary bike. That would indeed be a high cost, can’t even imagine the damage that could do to an ME patient. We are damned if we do and damned if we don’t.

    • Cort Johnson
      Oct 07 - 5:30 pm

      Thanks for checking it out Cheryl; it sounds like its something for the local population…I’ll include those facts in the write-up.

  3. go
    Oct 07 - 4:04 pm

    Why is the post exertional malaise study open only to women? why aren’t they studying men’s brains, too?

    • Cort Johnson
      Oct 07 - 5:27 pm

      My guess is it’s because men’s and women’s brains are different (no surprise there :)) and it makes it simpler (and less expensive) to focus on one gender…

  4. Liz Willow
    Oct 07 - 4:07 pm

    Thank you for including the petition to support our ME experts in this blog post, Cort. While it’s true the petition is gathering signatures for a thank you letter to be sent to each of the experts, please note that it will be sent to HHS afterwards. This sentence is highlighted in bold in the text of the petition: “The following thank you message will be sent to the signatories of the letter [and] sent to Secretary Sebelius once at the end after signatures have been collected.”

    • Cort Johnson
      Oct 07 - 5:36 pm

      Thanks Liz. I added that to the blog.

      • Mary DImmock
        Oct 08 - 6:38 am

        Hi Cort, Just to clarify The petition is a simple thank you to show support to our ME/CFS experts for taking the leadership position that they have taken in the September 23 letter to Secretary Sebelius – reaching consensus on the CCC, calling HHS to adopt it, urging HHS to abandon the IOM but especially standing up for a better future for all ME/CFS patients. The thank you will be sent to all of those who signed the September 23 letter to Secretary Sebelius. Secretary Sebelius can be CCed but she is not the primary recipient.

        Read more: (A)viva ME/CFS! Contest, Your Brain for Science, Making the Invisible Visible, the Definition Question – An Events Blog

  5. Karen H.
    Oct 07 - 8:42 pm

    Hi Cort, Thanks for all you do.I appreciate it a lot. Do note that alot is not one word,it is two words!

    • Cort Johnson
      Oct 08 - 9:34 am

      I did it again! OMG….(the post didn’t go through my editor – who has repeatedly warned me about this…:)) Thanks

  6. Darlene
    Oct 08 - 8:02 am

    The new Amazon link works like a charm!

  7. Christian Godbout
    Oct 08 - 9:38 am

    Hi Cort

    First , a most sincere thanks for putting Canada on the map! This is were I live and I as many others of my fellow canadians truly appreciate being backed up by you right now.

    Second I’ll take a chance and ask you what are your thoughts on the fact that there are no longer 35 but 34 signatories to support… Why would one of the top signatories of this powerful and unambiguous letter suddenly switch to the other side?

  8. London accountants
    Oct 24 - 4:05 am

    I seldom drop responses, however after reading a bunch of comments
    here (A)viva ME/CFS! Contest, Your Brain for Science, Making the Invisible Visible, the Definition Question – An Events Blog – Health Rising.

    I do have 2 questions for you if you tend not to mind.
    Could it be just me or do a few of the responses look
    like they are written by brain dead folks? :-P And, if you are writing on other
    social sites, I’d like to keep up with you. Could you make a list of the complete urls
    of your social sites like your Facebook page, twitter feed, or linkedin profile?

    • Cort Johnson
      Oct 24 - 9:48 am

      Hi London accountants – you can find the social networking sites on the right upper sidebar. Please connect with us there. Thanks for asking!

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