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Mt. Sinai looking for healthy controls for their study

Nielk

Senior Member
Messages
6,970
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.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
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.

Thank you Nielk. I have reposted on MEA Facebook. Not sure we are as aware of this study in the UK as you guys might be.

I do have a concern and this is that I don't think any study will 'prove or disprove' PACE even in relation to GET. But I am not conversant with the mechanics behind Enlander's study and so it's really a concern about the language he has chosen to employ.

Hope the study proceeds though. And am very pleased to see this kind of thing taking place :)
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Can't wait to read about his results when all done. He's certainly looking at a bunch of interesting stuff, so im sure there will be interesting findings made. He has a great team of experts working in his MEC.
 

Nielk

Senior Member
Messages
6,970
Thank you Nielk. I have reposted on MEA Facebook. Not sure we are as aware of this study in the UK as you guys might be.

I do have a concern and this is that I don't think any study will 'prove or disprove' PACE even in relation to GET. But I am not conversant with the mechanics behind Enlander's study and so it's really a concern about the language he has chosen to employ.

Hope the study proceeds though. And am very pleased to see this kind of thing taking place :)


Here is a thread about the Mt. Sinai study: http://forums.phoenixrising.me/index.php?threads/mt-sinai-recruiting-for-pem-study.20347/

I would think that Dr. Enlander has to word the study that way because he can't start from an endpoint. He is doing a study basically on PEM but, there is no guarantee of the outcome. I know from being one of his patients and from having taken part on the study a few months back that Dr. Enlander believes strongly that PEM is part of the disease. Hopefully, this study will prove it.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Here is a thread about the Mt. Sinai study: http://forums.phoenixrising.me/index.php?threads/mt-sinai-recruiting-for-pem-study.20347/

I would think that Dr. Enlander has to word the study that way because he can't start from an endpoint. He is doing a study basically on PEM but, there is no guarantee of the outcome. I know from being one of his patients and from having taken part on the study a few months back that Dr. Enlander believes strongly that PEM is part of the disease. Hopefully, this study will prove it.

Thanks! I shall take a look.

You might also be interested in the reply from Dr Shepherd of the MEA Ramsay Research Fund to my reposting of your comment, Nielk:

Russell - Yes, I know Derek and am aware of this study but don't yet have the precise details as to what they are doing. It will no doubt overlap with the European study on post-exertional fatigue/malaise that the MEA Ramsay Research Fund is now funding. We just got the first progress report this morning from the researchers in Belgium and this one is proceeding to plan. In addition to a healthy control group, the MEA RRF study will also be comparing the results to a group of (treated) breast cancer patients who have debilitating post-cancer fatigue to see if similar immunological and endocrine mechanisms may be involved.
I do not recall knowing about this European study. So thanks to you I have learned something else! Definitely an area worth pursuing as I said. Trying to get some more substance on this most puzzling of symptoms is worth the effort I think. Must say I think it wise to look at other illnesses too and post-cancer fatigue is funnily enough (not that it's funny) something that came up in my meeting this morning. All very exciting really, isn't it. :)

Bit more about that Belgium study:

RRF: New collaborative (Glasgow and Brussels) research proposal involving exercise-induced fatigue and post-exertional malaise

At the April 2012 Board meeting trustees discussed a peer review report on a funding application for a biomedical research study that aims to increase our understanding of the pathological and physiological mechanisms that cause exercise induced fatigue and post-exertional malaise in ME/CFS. Following some changes to the application, as a result of the peer review process, trustees agreed to fund the study, which will be carried in two European centres.

The study should help to demonstrate whether there are any pathophysiological abnormalities present, which may even be treatable, in people who meet the Fukuda research definition for CFS and the Canadian definition for ME/CFS (definitions or links to these definitions can be found in the MEA purple booklet). The study will also include a group of people with multiple sclerosis who experience significant fatigue (to see if there are any similarities) and a group of healthy controls with sedentary lifestyles.

This research commenced in January 2013.

RR Funding: £32,000
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Can anyone show me how to access the full details of this (or any other) clinical study from the relevant authority in the US? Only I presume it must have all been registered somewhere as it has received ethical approval. Thanks very much :)

I've read that other thread. Thanks Nielk :thumbsup:
 

Tom Kindlon

Senior Member
Messages
1,734
This was posted on PANDORA's Facebook page on Saturday:


By Derek Enlander

The postexertional malaise study at Mount Sinai Hospital is
continuing, we need some immediately controls to match patients with
ME CFS

Caucasian Males Needed
Age: 43-47,
Age: 48-52,

Caucasian Females Needed
Age: 38-42,
Age: 48-52,
...
Asian Female Needed
Age: 28-32, ..................................................................................................
................... we will pay $140 to the volunteers , to act as
"healthy" controls. The study requires exercise on a stationary
bicycle for 25 minutes on a Monday (approx 2 hours total in the
hospital by the time all the bookwork is done) , blood is drawn on
Tuesday, Wednesday and Thursday mornings (approx 30 mins) The study
will demonstrate the effect of exercise on the ME CFS patient,
confirming or denying the PACE report that exercise GET is a good
treatment of ME CFS. In my opinion this is a most important study
related to the PACE report.

---
Healthy controls can contact denlander@aol.com (denlander @ aol.com)