1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
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Bad Health Websites

Discussion in 'Action Alerts and Advocacy' started by Valentijn, Oct 28, 2012.

  1. Valentijn

    Valentijn Activity Level: 3

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    Someone mentioned being possibly referred to the Mayo Clinic for their ME/CFS diagnosis, which reminded me of how crap their website is regarding CFS and how ME/CFS patients have reported being treated by them.

    So I decided to do something about it :p On their website at http://www.mayoclinic.com/health/contact-us/contactus you can check "I want to provide feedback about your site" and fill out the form. So I filled it out:
    On the CFS pages, you can click on "references" to see the list. It's a very short list, and maybe we could inform them about the problems with some of their sources, like the CDC Toolkit and the PACE trial o_O
     
    AFCFS, GracieJ, GhostGum and 8 others like this.
  2. Gavman

    Gavman Senior Member

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    Seacoast pisses me off - they have some Google search thing up. I Google a supplement to find out more - no information, it just uses the search engine to get me there.
     
  3. Valentijn

    Valentijn Activity Level: 3

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    You can report those to google. There was another one doing that ... searching for "chronic fatigue syndrome" would bring up 20 links to one site, with a bunch of articles that had no mention of it.
     
    AFCFS likes this.
  4. wdb

    wdb Admin

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    I don't know if I'm looking at the wrong pages but the information doesn't look nearly as bad as you describe, there are definitely a few bits I have a problem with like suggesting GET will work and that being overweight and inactive is a risk factor (rather than a result) but otherwise it seems largely factual. I don't see anywhere that they are asserting CFS is psychological in nature, the paragraph about mental health issues is in a list of other illnesses to be ruled out before diagnosing chronic fatigue syndrome. The part about psychological counselling seems quite fair too describing it as a way to ' work around some of the limitations' i.e. not cure them.
     
  5. alwayshopeful

    alwayshopeful

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    I tried to be seen at the Mayo clinic (twice) but they turned me down. Said they couldn't do anything for me. The first time I said I had CFS, I am sure that scared them off. Four years later, I didn't mention CFS. When I filled out the papers on symptoms, I listed extreme fatigue last to see if I could throw them off. Still turned me down!! Not that I thought they could really do anything for me. But I know a lot of people that have gone to the Mayo for various problems and all they had to do was ask! Just really irritates me that this supposed top-notch clinic that caters to all the dignitaries and royalty from around the world turns their noses up at us!! They don't even bother to TRY and help! (Insert your preferable swear words here).
     
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  6. taniaaust1

    taniaaust1 Senior Member

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    Nods yeah.. the Mayo clinic doesnt specialise in ME/CFS at all and hence do knock back those who want to see them for "ME/CFS".

    Valenjin.. i thought the one at this site who recently said that she was being refered to mayo.. thou she probably has ME/CFS was being refered due to the autonomic issues rather then for ME/CFS eg BP/heart rate issues and needing tilt table testing (I maybe wrong). Thou mayo dont deal with ME/CFS, they may do autonomic/tilt table testing? and pick up other issues associated with our condition so possibly could help diagnose those.

    Could someone share if they know if mayo does deal with autonomic issues and does tilt table testing? Do they deal with POTS and NMH issues? (I would assume anywhere which does tilt table testing would).
     
  7. GracieJ

    GracieJ Senior Member

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    Can I quote you? I love what you wrote! Way to go, telling it like it is!
     
  8. Valentijn

    Valentijn Activity Level: 3

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    Sure, if you want to :p
     
  9. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    That may have been good luck in disguise. The few reports I have read of people with ME/CFS going to Mayo clinic have been uniformly bad. They spent a lot of time and money before being to told that Mayo couldn't do anything for them. I think some of them may have been belittled/ridiculed/insulted in the process.
     
    justinreilly likes this.
  10. barbc56

    barbc56 Senior Member

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    I am in my "teacher mode", so please keep this in mind when reading my response and let me know if I have interpreted your message correctly. I certainly agree with what you are saying 110% and we need to be more proactive by responding to misinformation. I do, however, have several suggestions.

    What about writing about a few specific issues you are talking about? Possibly citing a few resources, research papers other information or what you would like to see happen. Then adding personal feelings?

    As a teacher for many years I quickly learned that not focusing or repeating an incorrect answer as that might stick in a students mind, but instead providing how you get the right answer was usually an effective teaching tool. Alas, I have not always remembered to do this in teaching as well as in real life. Easier said than done.

    I also "tried" to use this technique with raising my daughters. I call it the "back door approach". You come in the house a different way but end up in the same place.

    As I say I absolutely agree with your statements but wonder if an aministrator would stop reading after the first sentence? Kudos for replying and writing this thread as I have gone to the Mayo site and plan to write a response.

    Take care.
    Barb C.:>)
     
    alex3619 likes this.
  11. alex3619

    alex3619 Senior Member

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    Hi Barb C, this is the "teach a man to fish" parable. Give a man a fish, you feed him for a day. Teach a man to fish, you feed him for a lifetime. Teaching someone how to discover for themselves solves the current problem, but also innumerable problems into the future.

    When I have tutored people using this approach they have done well. Some reject it outright though .... they just want answers. Those people tend to do worse over time.

    Bye, Alex
     
    barbc56 likes this.
  12. barbc56

    barbc56 Senior Member

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    Absolutely. My goal when teaching, which was one of my three related careers:) , was to teach students how to learn without a teacher, even starting with the younger students, teaching students study techniques, etc., etc., etc.Same with parenting as far as teaching independent thinking/critical thinking skills. I think it worked, sometimes to my chagrin.
    :eek:

    Barb C:>)
     
  13. AFCFS

    AFCFS Senior Member

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    I know that people with CFS may express symptoms uniquely, have different levels of ability and treatment outcomes, but when I went to the Mayo Clinic Chronic fatigue syndrome, Expert Answers page and saw the link to What is hot yoga?, and then read through it, I thought that if I actually had the motivation to do it or could perform it in any capacity, then it might be fair to say that I did not have CFS.

    "Hot yoga is a vigorous form of yoga performed in a studio that is heated to 105 F (40 C) and has a humidity of 40 percent. The formal name for hot yoga is Bikram.

    Bikram yoga is a 90-minute program that consists of a series of 26 postures. The postures require lengthy, forceful and well-controlled contractions of all major muscle groups. The demanding nature of the poses and the heat are designed to raise your heart rate and tire your muscles."

    - Granted it did say "hot yoga isn't for everyone."
     
  14. Valentijn

    Valentijn Activity Level: 3

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    I doubt Mayo cares about debating the science of CFS with patients. But they probably do care about their reputation with potential clients, so the approach I took was to focus on how ridiculous they look, clinging to the psychological explanations.

    But I think the best approach for websites like this is for many patients and advocates to focus on different aspects. The one thing I don't think anyone should do is write a novel in their feedback form. Something short and to the point, with minimal citations. Unless, of course, they show an interest (even by saying "no, our info is correct"), in which case I think a more in depth response is warranted.
     
  15. alex3619

    alex3619 Senior Member

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    Yes Valenijn, I think ridicule and sarcasm are under-rated in advocacy. As individuals many are vulnerable to ridicule. They might ignore careful substantiated accurate claims, but demonstrating they are acting stupidly is something most respond to. Bye, Alex
     
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yeah. Marc Iverson, founder of CAA, was one of them. They have historically been consistently horrible in their publications and treatment of patients. Currently, their Ann Vincent, who wrote that Reeves was a courageous man for his CFS work, sits on CFSAC. she has written the usual type of bs articles on psych in ME and Fibro.
     
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I have in the past submitted feedback to them as you suggest here.
     
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