Open NYC, USA: Study of muscle and cellular function in ME/CFS & healthy controls

[Dolphin]

https://neuroimmune.cornell.edu/research/participant-interactions/

Participant Interactions

We are seeking volunteers comprising 40 ME/CFS patients and 20 controls to participate in this NIH funded (U54AI178855) project. The ME/CFS subjects will be identified by expert physician Dr. Susan Levine, M.D. (Manhattan, NY). Only those participants whose onset of ME/CFS was before 2020 will be eligible. Please review our recruitment flyer for more information on how to volunteer as a patient or control in this research study.

The volunteers will fill out a large number of online surveys that will characterize various aspects of their current and past health, as well as specific ME/CFS symptoms. In a one-time visit to the Hospital for Special Surgery, each participant will provide a blood and a urine sample and undergo a muscle biopsy. The muscle to be sampled will be the vastus lateralis, which is on the side of the thigh, part of the quadriceps muscle.

In addition, each subject will have their endothelial function examined with an EndoPat® device, which measures reactive hyperemia.

The subjects will also perform a hand-grip strength test.
By analyzing all the data together, it may be possible to correlate particular symptoms with molecular disruptions, endothelial dysfunction, and level of muscle strength/weakness.

Samples banked from our prior two-day exercise test experiments will also continue to be used for cell-free RNA assays, identifying extracellular vesicles cargo, and endothelial function studies.

Patient interactions will occur at the Hospital for Special Surgery (HSS, Manhattan, NY), under the direction of Dr. David Fernandez, and Dr. Yoshimi Endo, M.Ds.
Dr. Endo will acquire the muscle biopsies. Dr. Laura Donlin at HSS will oversee fractionation of blood and preparation of urine and muscle biopsy samples for shipment to Cornell-Ithaca.

Hospital for Special Surgery (HSS, Manhattan, NY)

https://twitter.com/user/status/1877511302475563124

 

[Mij]

Only those participants whose onset of ME/CFS was before 2020 will be eligible. I'm guessing they don't want the overlap of LC?

 

[Creekside]

I'm guessing they don't want the overlap of LC?

That's my guess too.

I do wonder how easy it will be to find subjects near enough to that hospital. Maybe they'll need to open it up to subjects sampled/tested elsewhere. I certainly wouldn't travel across the continent just to give some samples that could be taken locally. Not that they'd want my weird-ME samples.

 

[Sean]

Only those participants whose onset of ME/CFS was before 2020 will be eligible. I'm guessing they don't want the overlap of LC?

Possibly also that they want confirmed persistent cases, which might help weed out ME/CFS misdiagnoses that were actually other conditions that resolved in the short-med term?

 

[Dolphin]

I happened to get an email about this study today:

---

There is a new clinical study that Dr. Sue Levine will be a part of that is taking place at the Hospital for Special Surgery in NYC, and being sponsored by the NIH and the Cornell University Center for Enervating NeuroImmune Disease. They are particularly looking for healthy volunteers, but other ME/CFS volunteers are also welcome, so please read the attached flyer, and read more about the study at:


https://neuroimmune.cornell.edu/research/ (NIH ME/CFS Collaborative Research Center 2023-2028 (U54AI178855)


Also, please pass the flyer and website along to whomever else you feel might be interested. If you or a friend or family member is able to participate, please contact Carl Franconi at 607-255-7244 or carl.franconi@cornell.edu. I believe that it says in the flyer that compensation is $400 if you qualify for the study.


Thank you in advance for your support of this important study for ME/CFS!


Sincerely,

 

[Murph]

Only those participants whose onset of ME/CFS was before 2020 will be eligible. I'm guessing they don't want the overlap of LC?

Hanson has been vocal about the possibility that specific viruses create specific responses and Long Covid migth be distinct from ME/CFS. I recall watching a speech where she was quite cross on this topic. I think she's probably wrong but I respect the approach.

To my eye the more important point about cohort definitions is that bodies will develop different compensatory mechanism / deficits over time depending on what systems were most affected initally. Two people with the same initial insult could look similar after 1 year but very different after 10 years.