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

  [ 16 votes ]   [ 3 Comments ]
www.ProHealth.com • May 18, 2012


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.

_________________

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)

Edited to add:

When asked, Dr. Enlander said that patients for this study will be recruited using the Fukuda / Canadian Concensus definitions.




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Article Comments Post a Comment

Post exertional malaise in m.e. sufferers
Posted by: sleepyblondie
May 19, 2012
Most of the people I know who have m.e. (members of support groups) are far too ill to undergo any kind of test. I do hope that you will take into accou t that the only possible m.e. sufferers you use in your studies will onky have a very mild form of m.e. and the results of your studies cannot automatically be extended to cover those with severe and very severe m.e.
Reply Reply

Only patients with Canadian Consensus for ME/CFS need apply !
Posted by: Laehcar
May 19, 2012
Please do not choose people who are a little down-in-the-dumps, or are a bit fatigued for these tests; those who will benefit from exercise (GET) because their body has the ability to produce feel good, pain-killing endorphins. Find the people who are truly sick with ME/CFS who have the Canadian Consensus Criteria for ME/CFS, which makes it compulsory that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, circulatory, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria.
Reply Reply

Definitions count!
Posted by: clouty
May 20, 2012
Please don't waste your time with the Fukuda definition. Research shows it misdiagnoses 40% http://www.ncbi.nlm.nih.gov/pubmed/21132135

The Canadian and the International are the only diagnostic criteria that are accurate.
Reply Reply


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