Mount Sinai ME/CFS Center Expects to Recruit Soon for Many-Faceted Exertion Physiology Study

[Ember]

ProHealth.com
May 18, 2012
http://www.prohealth.com/library/showarticle.cfm?libid=16989

May 18: The following is an XMRV Global Action Facebook repost of an update on progress from Derek Enlander, MD – a specialist in chronic fatigue syndrome (ME/CFS) diagnosis & treatment, and director of New York's new Mount Sinai ME/CFS Research Center.

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Update from our ME/CFS Center at Mount Sinai Medical Center in New York

The research proposal that we submitted months ago was a massive comprehensive multidimensional multidiscipline project.

• We have now completed the final stages of our IRB research proposal for Post Exertion Study in ME/CFS Patients. [The Institutional Review Board proposal is the formal design or plan for a proposed research activity]. These studies are a comprehensive series of serology, virology, immunology, cardio/pulmonary physiology and gene studies before and after exercise.

• Final IRB approval should be received very soon. This will be followed by Patient Recruitment.

• We have recruited Christian Becker MD, PhD, a pulmonologist and lead exercise physiologist at Sinai to spearhead the IRB.

• We hope that [as a] result of the study we may answer some of the questions relating to the NICE/PACE GET (graded exercise therapy). We will address the question [of whether] GET is, or is not, a useful mode of treatment.

• The study will also help us understand the biology of the disease, which is still obscure.

The CDC has been in contact with us and has shown interest in the exercise study.

• They want to remain in close contact.

• They have recently modified their tests and including exercise relating to ME/CFS. Cause and effect?

It would be nice to believe that there is a positive attitude change. They have noted that The Mount Sinai ME/CFS Center is the first major medical school ME/CFS center in the nation.

- Derek Enlander, MD (derek.enlander@mssm.edu)

 

[Gamboa]

I'm so pleased about this. I think once the testing is done and results published it will show that ME/CFS'ers have a definite, measurable physiological disorder in relation to activity and that PEM is not a figment of our imaginations.

I have just been to Ithaca to have a two day cardiopulmonary stress test done by Dr. Betsy Keller. She has been following the Pacific Fatigue Labs protocol for CFS patients and conducting a study that she hopes to get published soon in a major medical journal. I went with two other CFS patients from Ontario, Canada as well as Dr. Bryon Hyde, my current physician. I will have the results in another two weeks but apparently there was some pulmonary function problem that was obvious during the testing. I'll post about the experience and the results once I get them.

Gamboa

 

[Anne]

This looks very promising. Does anyone know if Dr Enlander and his team will be using the Stevens Protocol for cardio/pulmonary physiology (the Pacific Fatigue Lab protocol, same as Betsy Keller uses, I think)?

Gamboa, looking forward to hearing about your results and will be very excited to see Betsy Kellers study published. Let us know!

Jennifer Spotila has written several excellent blog posts about her exercise tests and results at Ithaca at http://www.occupycfs.com/

 

[Sing]

That is exciting, Gamboa. Why did Dr. Hyde go? I look forward to hearing more about his.

 

[August59]

Wasn't there a "test" that typically is not done on cardiac and stress test that Dr. Cheney said should be checked as it is almost always abmornal in PWC. I can't remember the name of it. I'll start looking as it may be something that has gotten shoved to the wayside, but could still be a valuable piece of information.

 

[taniaaust1]

This sounds great. There does need to be stuff like this to counteract all the GET bullcrap out there. I do hope they will be doing any exercise testing over 2-3 days to get a good view of post exertional affects.

 

[Cort]

love to hear that Gamboa...

What did Dr. Hyde think about the test?

Looking forward to the results

I'm so pleased about this. I think once the testing is done and results published it will show that ME/CFS'ers have a definite, measurable physiological disorder in relation to activity and that PEM is not a figment of our imaginations.

I have just been to Ithaca to have a two day cardiopulmonary stress test done by Dr. Betsy Keller. She has been following the Pacific Fatigue Labs protocol for CFS patients and conducting a study that she hopes to get published soon in a major medical journal. I went with two other CFS patients from Ontario, Canada as well as Dr. Bryon Hyde, my current physician. I will have the results in another two weeks but apparently there was some pulmonary function problem that was obvious during the testing. I'll post about the experience and the results once I get them.

Gamboa

 

[Gamboa]

Dr. Hyde went with us to observe what is done and learn more about this type of testing. We can't get the two day testing done here in Ottawa ( or anywhere else in Canada, as far as I know). Dr. Hyde is hoping to get as much information about it so that hopefully someone at the Ottawa Heart Institute can begin to do it. He was trying to get a resident to go down with us but I guess no one was that interested. Unfortunately until it is published in a major paper, I don't think anyone here will do it or care to learn about it.

I haven't seen Dr. Hyde since Ithaca. I go for my next appointment with him May 28th so will report back then. As far as I know he found it all very interesting. I think the reports from the three of us will be very interesting. Two of us were fairly high functioning for CFS'ers but the third person, a young woman, was mostly bed bound and could barely do the first day of testing let alone a second day. Apparently Dr. Keller will provide a very detailed report explaining everything. I can hardly wait.

By the way, I have been feeling awful for the last week. Typical of course after not only two days of aerobic bike riding but the additional stress of traveling. I was thinking it might be useful to have a third day of testing a week after the two day event. I'm sure, in my case anyway, that a lot more abnormalities would show up since I feel a lot worse now than I did right after the testing.

Gamboa

 

[Carola]

Gamboa, it was very generous of you to undergo this effort. Thank you.

 

[Sing]

Thanks for telling us what has happened. I too think a third day of testing would be revealing of our differences vs healthy controls or other illnesses. It is this longer term payback which ends up limiting so many of our choices.

 

[Sasha]

By the way, I have been feeling awful for the last week. Typical of course after not only two days of aerobic bike riding but the additional stress of traveling. I was thinking it might be useful to have a third day of testing a week after the two day event. I'm sure, in my case anyway, that a lot more abnormalities would show up since I feel a lot worse now than I did right after the testing.

Hi Gamboa - just wanted to add to thanks to you for doing this for us - I'd be really scared to do such a test and hope that one day, that won't be necessary but for now, it seems really important for researchers to do this. You're doing all of us a great service. Thank you! I hope you're starting to feel better.