Mt Sinai recruiting for PEM study

[SOC]

I would absolutely exercise to collapse in order to get the data we patients need. I'm at the age where I'm not going to get my career back even if I achieved complete remission in the next couple of years (which I doubt is going to happen). I've already been severely ill, and though I expect I'm going to seriously dislike it if I have a long-term crash, I also have learned a lot about getting through (and past) a crash. Most importantly, I have a spectacular doctor in Dr Rey, who I am confident would do what it takes to help me improve my health afterwards.

I'm looking at the benefit to the young people -- including my ME/CFS afflicted 20yo -- that can be achieved through the participation of more severely affected patients. We've had too many studies composed of mildly affected patients because the more severely ill among us are rightly concerned about the potential damage to our long-term health.

Unfortunately, I'm not in NY and I already have an ME/CFS doctor that I don't want to change. I'll keep an eye on the study though and if I can find a way to participate, I will.

 

[Nielk]

I plan to be I this study. I've never done one before. don't look forward to exercising, but the test results may be useful.

justinreilly - have done this yet? I might take part next month. I was wondering how it went for you?

 

[Recovery Soon]

I'm undergoing the study now - I was on the bike for 20 minutes yesterday.

I pleaded to run til exhaustion on the treadmill but they've made the decision, and I think wisely, that endurance is a better gauge of daily exertion so intensity is not the goal here. Although they said they would also love to do intensity- resources make you have to choose- so they've gone this route.

I pedaled at 70% capacity for 20 minutes- and got a mild PEM exertion this morning- again I would have preferred to destroy myself- but they are confident that even this level of exertion will reveal cellular changes- and that I won't necessarily need to get incapacitated to yield the data they need.

The Researchers are awesome- they were incredibly interested in learning as much as they can- and open to any and all suggestions. I think the community is in great hands here- these are smart, warm hearted people truly looking to help us.

The head researcher- Dr. Becker- said that this study will yield over a terrabyte of data for EACH patient- terrabyte being 1000 gigabytes- I don't quite see how this is possible- but I am absolutely thrilled to be involved- and the idea that such data will reveal my whole genome.

They drew blood on me this morning- and will do so again tomorrow and Friday.

I also have to give a stool sample- and carry around a Fit Bit pedometer all day- and sleep with it.

This study differs from ones in the past- this according to one of the researchers- in that the past ones have relied on qualitative research whereas this one is quantitative- and does not begin with a hypothesis but is extracting an enormity of data- which they will then use to find patterns.

So far it's everything I hoped it would be- and I think this is a very good time for us as a patient population. They're not playing around.

 

[anne_likes_red]

Thanks for doing this Recovery Soon, and thank you for the report.

 

[Nielk]

Thanks recoverysoon. Do you know if you'll be getting your own results to these tests?

 

[Recovery Soon]

Happy to share.

I don't know exactly when the results will come back- I think they are figuring out exactly how to configure this- but they are committed to giving patients data- the genetics are so complex you need an interview with a geneticist to understand the results.

Could be many months. Not sure at this point.

 

[Nielk]

Happy to share.

I don't know exactly when the results will come back- I think they are figuring out exactly how to configure this- but they are committed to giving patients data- the genetics are so complex you need an interview with a geneticist to understand the results.

Could be many months. Not sure at this point.

Thanks. I'm slated for the middle of February.

 

[Shell]

Really admire those of you doing this.
Just been out today and am so crashed and in so much pain I can't imagine doing these research things. Thank God for people who are up for it.

 

[Nielk]

I am slated to take part in the study starting Feb. 19th.
For anyone who took part in the study, how long did you spend there each day?

 

[JayS]

First day was most intense, but I don't think it was more than a couple of hours. The following three days, probably less than an hour each day. The traveling back and forth, at least after the first day, is the worst of it, for most people, I would think. But then maybe that was the case more so for me as I was taking subways & buses (needed a taxi ride home after doing the exercise bicycle, though).

 

[Nielk]

Thank you - JayS

I can't do mass transit from where I am. I would have to take a bus and two trains...way too much for me. I think I'm going to try to drive in.

 

[Helen]

Do you know if they are doing genome studies, or what genes do they analyse?
It would be interesting to know if they will study methylation ; genes included and/or a lab methylation panel?
Rich van Konynenburg was invited to give a talk on this subject at Mt Sinai as you might have seen.

 

[Nielk]

I just went today for my initial day of the study. They are doing a total gnome work-up on each patient.

 

[Helen]

Great!
Thank you for participating and doing this for all of us.

 

[Sasha]

They are doing a total gnome work-up on each patient.

That gives me a great mental picture...

 

[Artstu]

That gives me a great mental picture...

Me too. It is very nice to find someone who takes part in these studies.

 

[Nielk]

Thank you all. I needed these cheers being that I woke up this morning in major pain.
I have to go back now for three consecutive mornings for a work-up each day. No more exercise though.

 

[Sasha]

Thank you all. I needed these cheers being that I woke up this morning in major pain.
I have to go back now for three consecutive mornings for a work-up each day. No more exercise though.

Sorry to hear about the pain! All joking apart, I really appreciate what you and any one else taking part in this study is doing for the rest of us.

 

[SOC]

Huge thanks to those who participated in this study. I'm sorry you're hurting, but I hope the long-term benefit to the community makes up for it to some degree.

 

[taniaaust1]

I would participate, but it's a haul for me, and the compensation is not enough to cover my expenses (fuel, food, lodging etc..), so I cannot do it. Why does a study that last 3 days pay so little? Who determines this?

GG

That seems to be a typical study payment no matter where you are.

Ive been in 4 different studies now.. all paid but the payment basically is only enough to cover petrol. One study over two different afternoons only paid $50-60 (that's australian.. probably not much different to American).

People partake not really for the money but just to help research and the good thing with many studies is that one gets one own results too. Due to ME/CFS studies Ive had MRI, Spect scan etc and other tests I wouldnt have got otherwise. Im currently part of a study at the moment.