Mt Sinai recruiting for PEM study

[Sing]

After the Lights' study, I think they ought to be able to find significant differences in the study group findings, us, vs. the controls. Maybe someone has already commented on this, but is the Mount Sinai study close enough to the Lights to become a potential confirmation of it? I expect it may do this and more--that the Mount Sinai researchers are looking for even more. Any thoughts?

 

[Xandoff]

I sent an e-mail to MT Sinai and got a tepid response to contact them in three months.

 

[Nielk]

I sent an e-mail to MT Sinai and got a tepid response to contact them in three months.

Hi Xandoff,

I e-mailed Micol Zweig from Mt. Sinai asking them what's going on. she said that they have recruited enough patients for the pilot study and are now in the process of working on the matched controls. When this is done, they will start recruiting for the rest of the study. This is why you were told that there is a three months' wait.

I hope that you will follow through in getting back to them. I feel that this is a very important study for all of the ME/CFS community and for the particular patients who take part, it is an opportunity to get your own results.

 

[Xandoff]

Nielk,

I will try and remember to contact them in three months. Thanks for the positive encouragement. This stuff is very important. You nailed it.

 

[acer2000]

Any update on this study? I too contacted them a month or so ago, and was evaluated by Dr Enlander and cleared to participate, but then was told it would be "several weeks" until they were recruiting again.

 

[Nielk]

Dr. Enlander just posted this on Facebook:

Derek Enlander
The MOUNT SINAI Medical Center ME CFS study on post exertion malaise (PEM) is proceeding, this will prove or disprove the PACE study which recommends Graded Exercise Treatment (GET) as the prime therapy for ME CFS
We NEED control subjects (non ME CFS patients) to compare and contrast the ME CFS patients . We offer $140 to the controls for their participation. The study takes approx 3 hours on the first day and ten minutes for a blood draw on the following 2nd, 3rd and 4th mornings
contact me at denlander@aol.com if you have a participant.

 

[Sasha]

Dr. Enlander just posted this on Facebook:

Good catch! I'll start a fresh thread on that - it needs a new action from people.

Edit: Oh! I couldn't find it on his FB page - could you post a link, please?

I'll be away from the computer for a while now.

 

[Nielk]

Sasha

Here is a link: https://www.facebook.com/derek.enlander/posts/517111431689261

 

[Sasha]

Sasha

Here is a link: https://www.facebook.com/derek.enlander/posts/517111431689261

I got a message saying that the current was currently unavailable when I clicked through - sorry! Can I leave you to set up a fresh thread on this if you feel it's a good idea? I might leave something useful out that I can't see!

 

[Rrrr]

....Please post widely....

ME/CFS Study in New York City Needs "Normal" Controls

Long-time ME/CFS doctor, Dr. Derek Enlander, has put out a request for help. He states, "I need 'normal' controls for the post-exertional malaise study at Mount Sinai Medical Center's ME/CFS Center. We pay $140 for the 'inconvenience.' Could you advertise this fact?"

Please get the word out to your communities so that Dr. Enlander's study can be a success. The details are here:

- The "normal" controls would be at his New York City center for 3 hours on day 1 (requiring 25 minutes of exercise only), and would need to return for a blood draw on days 2, 3 and 4 (requiring 10 minutes each time).
- There is parking at the hospital (which it is assumed the control must pay for), and, again, the control is paid $140 for the "inconvenience" of participating.
- To sign up, contact Dr. Enlander directly at <denlander @aol.com>

 

[*GG*]

....Please post widely....

ME/CFS Study in New York City Needs "Normal" Controls

Long-time ME/CFS doctor, Dr. Derek Enlander, has put out a request for help. He states, "I need 'normal' controls for the post-exertional malaise study at Mount Sinai Medical Center's ME/CFS Center. We pay $140 for the 'inconvenience.' Could you advertise this fact?"

Please get the word out to your communities so that Dr. Enlander's study can be a success. The details are here:

- The "normal" controls would be at his New York City center for 3 hours on day 1 (requiring 25 minutes of exercise only), and would need to return for a blood draw on days 2, 3 and 4 (requiring 10 minutes each time).
- There is parking at the hospital (which it is assumed the control must pay for), and, again, the control is paid $140 for the "inconvenience" of participating.
- To sign up, contact Dr. Enlander directly at <denlander @aol.com>

Dr. Enlander just posted this on Facebook:

Were they paying for CFS patients?

GG

 

[Nielk]

Were they paying for CFS patients?

GG

Yes. the same $140

 

[Firestormm]

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

Hey, it's me Bit late but I was wondering how they might take into account the pre-appointment travel that you endured, Nielk? Did they perhaps take into account the exertion involved prior to and post exercising on the bike; and if so I wonder how?

I find all of this quite fascinating. Thanks.

 

[Helen]

Does anyone have an update on these studies? I am particularly interested in the genome study that should be conducted parallel to the PEM study at Mount Sinai Hospital.

 

[Nielk]

Does anyone have an update on these studies? I am particularly interested in the genome study that should be conducted parallel to the PEM study at Mount Sinai Hospital.

I don't think that they have any results available yet, as far as I know.