Mayo's Info on CFS is BAD

Discussion in 'Fibromyalgia Main Forum' started by pasara, Mar 28, 2008.

  1. pasara

    pasara New Member

    I was just looking at Mayo's online patient info on CFS (which appears to be readily available as a written pamphlet too.)Nowhere in it does it refer to post-exertional malaise and it actually recommends exercise for CFS sufferers! I could not believe that it would miss such a major symptom as well as suggest something (exercise) that could worsen or even be downright dangerous for a CFS sufferer! While it says to gradually increase exercise, the forms it suggest are walking, swimming, biking, and water aerobics. (What a joke! Tell that to those of us who can't even carry a plate to the table.) It even quotes a study saying 70% of CFS sufferers feel better with a graduated exercise program. As far as I saw, only once, in the introduction, did it say that mental and physical activity "may" worsen symptoms. Furthermore, it does not recognize the severity of the illness. Nowhere that I saw does it mention how disabling this can be.
  2. Missizzy

    Missizzy New Member

    Pasara--This is why no one with FM or ME should EVER go to the Mayo for help in my opinion. My trip there was a complete waste of time and money. I was not treated well at all. The techs and support people are lovely but the doctors completely discount anything even related to invisible diseases like ours.

    I found it very interesting, that in the Mayo museum, they have a display about how cutting edge their Neuro Dept. is. They chart the history of MS diagnosis from the "hysterical" disease of the 30's to their current advanced treatment plans. Don't they see the irony there?

    Before I was sent to the Mayo (2500 mile road trip one way for me), my doctor and I researched how they would receive me. I found nothing on the web that showed that they would be anything but open-minded. My doctor even called the neuro there and spoke to him about the difficulty of my diagnosis. They were most welcoming. I wish I would have known about this board.

    We spent over $10,000 out of pocket on medical bills plus the purchase of a motor home, travel costs, and three weeks of specialized respite care for our special needs children. It was a major undertaking and I spent a full 9 days in testing. Two of my neuros here in Southern Oregon laughed and said they were sending me to the "mothership". I wish. I went with such hope. They came up with not ONE recommendation at all.

    It does not surprise me at all that their overview of the illness is inept, out of date, and possibly harmful. If any one is seriously considering a trip there, please do an archive check on my posts and others' concerning their displeasure.

    Thank you for pointing this site out, Pasara. I think I read on another post that their "CFS" page is 10 years old.

  3. kellyamos

    kellyamos New Member

    Boy, do I also have a story about the Mayo in Scottsdale, AZ.....

    I was dx with RA in 1999. But then in June, 2005 started having severe pain all over and had no energy. Went to my Rheumy and he said " I know that all of these new symptoms are not related to the RA and I don't know what it is." He had a real attitude and then just walked out of the room. Needless to say he was FIRED right then.

    I decided to contact the Mayo in Phoenix and I got an appointment in August, 2005. I did a ton of research on my symptons and it led right to FM. Over the course of 2 months and about 12 visits for every test you can imagine, ie; heart, lungs, etc., All of these test came back normal. I saw an Internal Medicine Doc, then a Pulmonary Doc and finally saw a Rheumy there and she diagnosed me with FM.

    Her fnal statment to me was "I believe you have Fibromyalgia (which I pretty much knew from my own research) as well as the RA. Come back for a checkup in 2 months". That was it... No treatment plan, no pain meds for the dire pain I was in... Nothing..

    Then about a month later, the Mayo had the audacity to send me a bill for $4,535.00 to be paid upon receipt. That is after my insurance paid them over $9,000.00.

    My insurance as well as most, only cover usual and customary charges. The Mayo charged an average of 400% OVER the usual and customary charges for EVERY single doc visit, blood tests, x-rays, etc.

    I did fight with them for months over the bill and I was able to get them to settle for $2,500.00 which was still a waste of money.

    Their costs are outragous for absolutely nothing. I have since found out that the Mayo is infamous for running every test under the sun on patients which is obviously to rape and pilage desparate patients of every cent they can drain out of the insurance companies and patients.

    I want to tell people to steer far, far away from the Mayo. This was the most stressful, disappointing and upsetting experience of my life.

    I have finally found a pain doc that has helped me tremendously.

    So please all, BEWARE of the Mayo.....

  4. doxygirl

    doxygirl New Member

    Thank you for sharing and warning us....this kind of info could really help someone else from wasting their money, energy and time!
    Pasara, thank you also hon for sharing what you have just brings so much frustration upon me when I see these kind of articles and info being put out there...I mean these dd are hard enough to deal with...

    and the sad thing is that there are people who will read this and it will be etched in their minds and they will never believe anything different!

    I really encourage all of us to write to the mayo clinic(s) and challenge this iaccurate info they are publicly displaying and poisioning people minds with....

    It is just one of the numberous reasons that we have to fight to get others to believe in that we are really as sick as we are!

    so thank you for bringing this to our attention

  5. Timaca

    Timaca New Member

    did not diagnose me.

    I ended up having lyme disease and chronic viral illnesses.

    Both diagnosed at reputable institutions (Columbia Univ. Medical Center and Stanford Univ. Medical Center).

    I have since sent letters and doctors reports to Mayo informing them of the missed diagnoses. I figure the good doctors will listen and learn. The bad ones won't.

    Let's hope they learn.

  6. PainPainGoAway

    PainPainGoAway New Member

  7. smhaws

    smhaws New Member

    I worked as a temp at the Scottsdale Mayo Clinic one summer several years ago. One of my major projects was developing a spreadsheet/database of all billable tools/instruments that could be used in surgery. I had to list a bunch of information, including the at-cost price--and the mark-up they charged. I can't remember the exact mark-up, but it was definitely over 100%. As if they're not charging enough for the actual surgery and pre- and post-care. I know that all supplies everywhere are marked up, but the giant mark-up at the Mayo Clinic seemed overly excessive.