Feedback from Mayo Clinic, Rochester, Minnesota

[Lake of the Woods]

This is my first time on your forum. I was diagnosed with OT at the Mayo Clinic in Rochester April/06. While I was there I was asked to take part in a study by a Neurologist who was doing research on OT at that time.

Naturally I agreed and spent 3 hrs with her and another Neurologist and they did various tests on me using electrodes, a lot placed on my head and other parts of my body. They advised that I would be contacted when the research was completed as to the outcome.

I recently contacted the Mayo Clinic to see what was happening and was advised that the Neurologist doing the research had left the Mayo Clinic but just today I received a call from the other Neurologist who took part in my testing and he advised me that there are about four Neurologists at the Mayo who are very interested in this disease and he is doing more work on the research himself. He also advised that the Neurologist who was initially doing the research will be returning also to complete it - he doesn't know the time frame.

When I was talking to the Mayo Dr. at the study she had asked me if I would be willing to come back for the second part of the study. I asked her if funds would be provided for the trip because I had paid for my current visit out of my own pocket. She said that there would be no dollars for travelling etc because all she had for research was $5,000. I just said that I would have to see - felt that we would be in touch with each other and if she found enough people to participate in the study she wouldn't need me.

When the Dr. from Mayo phoned me today he kind of caught me off guard but I did ask him about "ongoing research and funding". I have thought about that since I returned from my trip there. I wondered if money was raised - would that be helpful to doing more research. Do they need more money? I thought that $5,000 really is a very small amount.

I brought up that subject when I was on the phone with the Dr. today. I asked him if money was raised to go to the research of OT would that be helpful and how would it work? He said that the way it works is that usually if research is going on it will continue until the funds run out and then at that point they would let the ie. "foundation" supporting the problem know. Because we don't have a foundation that is a different matter. He also said that "money is not the issue right now", but "it is always helpful to know that there would be funds available if needed". I didn't get into it any more than that as that is a whole other ball game.

I wanted to let everyone know about this - I asked him if I could keep in touch with him and he was very receptive and said that I would hear about what was happening but also if I wanted to call him about every four months it would be appropriate and he gave me his number. I will keep you informed about anything further re this research.

I don't want to make this any longer - I have a few other ideas that I want to talk to you about but will do them in another posting.[/b]

[RichardS]

What a derisory sum - $5,000:-( I thought we were bad enough here in the UK, but that just puts the attitude of medic fund-controllers worldwide into true perspective doesn't it - like CFS/ME (in which I have been heavily involved), no-one wants to know.

If I were resident in the States I'd have no hesitation in offering you a contribution to your travelling exes. I cannot think of a better way to spend money. You are at the cutting edge of this thing. No-one has yet come up with a sensible approach to the illness, and this opportunity must NOT be allowed to slip away. Count me in.....and here's anticipating your next post.......

Best


Richard Senior

This is my first time on your forum. I was diagnosed with OT at the Mayo Clinic in Rochester April/06. While I was there I was asked to take part in a study by a Neurologist who was doing research on OT at that time.

Naturally I agreed and spent 3 hrs with her and another Neurologist and they did various tests on me using electrodes, a lot placed on my head and other parts of my body. They advised that I would be contacted when the research was completed as to the outcome.

I recently contacted the Mayo Clinic to see what was happening and was advised that the Neurologist doing the research had left the Mayo Clinic but just today I received a call from the other Neurologist who took part in my testing and he advised me that there are about four Neurologists at the Mayo who are very interested in this disease and he is doing more work on the research himself. He also advised that the Neurologist who was initially doing the research will be returning also to complete it - he doesn't know the time frame.

When I was talking to the Mayo Dr. at the study she had asked me if I would be willing to come back for the second part of the study. I asked her if funds would be provided for the trip because I had paid for my current visit out of my own pocket. She said that there would be no dollars for travelling etc because all she had for research was $5,000. I just said that I would have to see - felt that we would be in touch with each other and if she found enough people to participate in the study she wouldn't need me.

When the Dr. from Mayo phoned me today he kind of caught me off guard but I did ask him about "ongoing research and funding". I have thought about that since I returned from my trip there. I wondered if money was raised - would that be helpful to doing more research. Do they need more money? I thought that $5,000 really is a very small amount.

I brought up that subject when I was on the phone with the Dr. today. I asked him if money was raised to go to the research of OT would that be helpful and how would it work? He said that the way it works is that usually if research is going on it will continue until the funds run out and then at that point they would let the ie. "foundation" supporting the problem know. Because we don't have a foundation that is a different matter. He also said that "money is not the issue right now", but "it is always helpful to know that there would be funds available if needed". I didn't get into it any more than that as that is a whole other ball game.

I wanted to let everyone know about this - I asked him if I could keep in touch with him and he was very receptive and said that I would hear about what was happening but also if I wanted to call him about every four months it would be appropriate and he gave me his number. I will keep you informed about anything further re this research.

I don't want to make this any longer - I have a few other ideas that I want to talk to you about but will do them in another posting.[/b]