My Experience in the Jacksonville Mayo Clinic's CFS program

Blog entry posted by mirespada, Sep 8, 2018.

As I have mentioned in my introductory post, I was undiagnosed for 6 and a half years. During those years, I was completely abused by the medical system and disillusioned about how much medicine and patient care has advanced. I have stories (oh, do I have stories!) about that time and my heart goes out to all of those who remain undiagnosed and lost.

Actually, I got into the Undiagnosed Program at the Jacksonville Mayo Clinic at the suggestion of a emergency room doctor in New Mexico (that's a long story). I flew all the way to Florida and had something to prove to my primary care doctor (another long story). I saw many of the top specialists in the #1 hospital in America and went through all the tests. My doctor who was managing me in the Undiagnosed Program told me that, though I may have had all these tests before, she wanted me to do them again at their clinic so they know it was done right. So I was ran through the wringer once again and getting back negative results left and right.

I would like to take a minute to side track and say...most of the specialists I had seen were actually very nice. The neurologists (who I had bad experiences with others in their field before) told me they saw nothing wrong with my brain but were interested in what the program came up with as a diagnosis. They talked with me about archaeology for awhile (which is what I did before I became sick) and assured me that one of the specialists were sure to find something.

There was one specialist I saw that I would like to take note of...and that was the Mayo Clinic's psychiatrist. Before I saw him, I had to fill out a long packet with yes or no questions. Nowhere on the packet was there room for explanations about your answers. The next step was an interview with his assistant. She started the interview by saying that she wanted short answers to what she asked and didn't want to hear my whole life's story. She asked me a few questions about my packet and, true to her word, if she thought I was going on too long, she would cut me off. After that brief interview, the doctor saw me. Based on my answers in the packet and what his assistant told him...he diagnosed me as having a borderline personality disorder!!!! He hadn't even had a proper conversation with me!

I tried to argue with him! I mean, I have a husband, have always held down a job, had several friends that respect me...none of this screamed borderline. How could he make such a life-changing and ruining diagnosis based on such little facts? My arguments just cemented his opinion I had something psychologically wrong. My parents fought it to get stricken off my medical record. Guess what? In order for it to be taken off, his diagnosis had to be reviewed...by a panel of psychiatrists...who say whether they thought he was correct or not in his opinion. So, the only one monitoring psychiatrists ARE OTHER PSYCHIATRISTS!!! I WAS SO MAD! Thank goodness my main Undiagnosed Illness doctor thought that diagnosis was nonsense and didn't take it into consideration. Let me make this clear now: I DO NOT HAVE BORDERLINE PERSONALITY DISORDER!

The one specialist I looked forward to seeing was their rheumatologist. From everything I read at that point, my symptoms sounded like something they would deal with. When I went in, the guy was very pleasant towards me. He said, "I think I know what is going on!" He then gave me the fibromyalgia points test to which I passed. He then proudly announced, "you have fibromyalgia and Chronic Fatigue Syndrome." I started to cry. I was just so happy! That was the first time someone gave a name to what was wrong with me! He suggested their three day course for Fibromyalgia to learn how to deal with what I have.

You see, the Mayo Clinic specialists think that since fibromyalgia and Chronic Fatigue share the same symptoms and that many people have both, that they should be just called the same thing. Right away I was confused. I mean low-blood pressure and anemia have the same symptoms, but if you treated them the same way, you could really hurt the patient! But no! They claimed to know how to treat both fibromyalgia and Chronic Fatigue Syndrome and make it so much better! This was what their course was like:

The patients in the class were excited. We all talked to each other before instruction started and were happy to get to actually socialize with other people who were the same. Many had just gotten diagnosed and swapped our horror stories of being wrung through the medical system. We were all excited to finally get some answers.

They started the course with the instructor saying they “totally believed us when we said we are sick” and “they couldn’t believe how people are being treated by their doctors”. Everyone smiled at that and nodded at each other happily. Yes! This is what we have been wanting! They then spent days telling us if we quit thinking we were in pain or we were too tired, we would magically quit being sick. To prove their point, they showed us a diagram that if you keep thinking something, it becomes the easiest path to follow in your brain, and your brain automatically follows it believing it to be true so if you make a new path "I am not sick" and follow that instead, you will quit being sick. Diagrams are scientific, of course, and even though their theory is just a theory, they presented it as if it is a common truth. They then showed us all the awe inspiring things that people could achieve physically with their body, just by thinking and truly believing it in their brain!

After this explanation, I raised my hand and skeptically asked, “So, what you are saying is that we are doing this to ourselves, is it not? I thought that you totally believed we are sick?”

“We do,” the Mayo Clinic’s ME/CFS specialist said with his gleaming salesman smile, “you obviously are sick, that’s why you are here. We are just telling you how to fix it.”

“But we are sick because we are doing it to ourselves by thinking we are sick. That’s what this means, am I right?” I pressed.

The man looked at the clock and said, “Oh no! It’s time for our break. We went over time! I will answer the question when we get back.” He never did answer my question.

The last day of the program I had to miss because we were flying back to Oregon. When I went up to the instructor and informed her I wouldn’t be there the next day she gave me the angriest look. “You have to,” she told me, “it’s important you stick to the whole class. Tomorrow we have you sign a commitment that you are going to try exercising and give you cognitive therapists in your area to contact. We also give you an opportunity to enter our two-week long program where we help you by tracking your exercise and therapy.”

When I repeated I really couldn’t come, she was super hostile...about this voluntary class. After my skeptical questions, I was already deemed “a troublemaker” and now I wasn’t cooperating again. I felt pressured, though, by her disapproval and said, “is it okay if I come back for the last day of the class when I come back in three months? I have more tests I need run then and so I will be back in Jacksonville.” I did fly to Florida twice that year for testing at the Mayo Clinic.

“You can’t,” the woman snipped, “It is really important to finish the course with the group you started with and we don’t allow you to take the course more than once.”

It wasn’t until I got home and actually did research on ME/CFS, the PACE trials, and what the program really is about that I figured out why she was being so difficult. After actually getting some time to think about everything, I quickly realized that their program was a sham. If I went back into the class after researching ME/CFS a bit, I would probably spend the whole time arguing with them and trying to save the patients who were being led to believe they would get better in their hokey program by the instructors’ misleading, flowery words. That’s why they won’t let anyone in a second time, to avoid conflict from people who research into it more. Can you believe that this is a program at one of the top hospitals in the nation? They might as well be selling us snake oil and training used car salesman on how to high-pressure sell someone something.

They tried to have me commit to a two-week long program, where you are admitted to the hospital. They require and track exercise and put the patients through individual and group therapy to tackle their thought streams. My mom put her foot down. I had the excuse that I lived in Oregon and would be unable to go. If not for that, I watched as the doctors pressured other patients into signing up for the program. They are exercising those with ME/CFS in big groups! It was madness!

So, that is my experience with the Mayo Clinic.
Joh, RobR, Snow Leopard and 1 other person like this.
mirespada

About the Author

I am a 29 year old mother of two beautiful girls. I have had ME/CFS for 8 years. Before I got sick, I was an archaeologist for the Forest Service (the youngest professional archaeologist in the Southwest!). I now live with my very supportive family: my mom, my dad, my sister, her boyfriend, my S.O., my two girls, my two dogs, my cat, and 4 fish.
  1. RobR
    They did this in the UK so I can kind of imagine what you went through. And PACE in the UK has been labelled as one of the greatest medical scandals. I was offered a place but had to refuse because of the 100 mile round trip.

    During the acceptance interview the psychiatrist was quite clear about what we would be put through.
    To me it seemed these classes were about people getting paid and keeping themselves in a job, nothing more. Regardless of what real science was saying.
    Wolfcub likes this.
  2. Wolfcub
    Whoah! Oh dear this does not sound good. You poor thing having to be put through all of this rubbish! There is something weird going on there....
    I hope you can find something better than that to be of some help.

    And people say homeopathy is "snake oil" haha!!
    RobR and mirespada like this.