The Names of Research Centres

[Nielk]

The reason why the name IS important is because it all matters who the patient cohorts are that these centres are studying. If you don't have a defined group, the results will not mean anything. This has been a problem with previous studies. Which cohorts did they chose? Which definition of ME or CFS are they using? That is at the heart of what's important.
If they study neuroimmune diseases, this could be a group of people that encompass ME, CFS, MS, Parkinsons etc.. How would the results be refined and usefull to us?

 

[Tristen]

Agree, we dont feel tired , we feel sick. And the feeling is literally in our head, head aches/pressure fog etc etc like some type of meningittis/brain inflammation.

cheers!!!

Exactly! When I take a good anti-inflammatory, the first changes are CNS. My vision clears, I can see, read, concentrate. The Tinnitus clears, I can feel, sleep better, dream, etc...... Obviously a lot of the symptoms are brain inflammation. Personally, I believe that starts in the Gut, aka, second brain.

 

[denlander]

new ME/CFS centers

We found it ineresting that once again Phoenix Rising has not listed the Mount Sinai ME/CFS Center in the "new " list. We are sure it is an oversight .
Not only has Cort not listed the Center but has studiously avoided any mention of its activities. Mount Sinai New York has attracted the stongest group of researchers in the Nation , Schadt,Singh and Merad to join Enlander. Sinai is not a minor college but a major medical school.
Joy Houndlow
Volunteer, Mount Sinai

 

[Nielk]

Hi Cort,

Why not do a write up article on the front page news about the new Mt. Sinai ME/CFS Center in NY like you did so well for Dr. Nancy Klimas joining the NSU?
I enjoyed reading about Dr. Klimas' article but, the Mt. Sinai's new ME/CFS center news came out before the announcement from Nancy.
I think you have contacted Dr. Enlander before and if you need a liaison, I would be more than happy to get involved.

Thanks,
Gabby (Nielk)

 

[Nielk]

http://www.irishcentral.com/news/Ir...fatigue-syndrome-clinic-in-NYC-136017443.html

 

[Guido den Broeder]

Has it struck anyone else that the recently formed ME/CFS research institutes have been set up to do ME/CFS research (primarily) and yet avoid making this explicit in their names?

The one exception being the Stichting ME Research in The Netherlands, I guess. Starting up the first ME cohort in the country.

 

[Persimmon]

Just noticed - Montoya has changed the name of his ME centre.

It's now called the Stanford Myalgic Encephalomyelitic / Chronic Fatigue Syndrome Initiative. They abreviate this as the Stanford ME/CFS Initiative.

It used to be called the Stanford Chronic Fatigue Initiative. They are, however, retaining their old web address www.chronicfatigue.stanford.edu

This name change presumably reflects Montoya making progress in persuading his Stanford colleagues that ME (or at least ME/CFS) is a legitimate medical topic, distinct from chronic fatigue. Having got the senior Stanford geneticist Ron Davis on board must have been a major coup for Montoya in his campaign to win over skeptical colleagues.

 

[*GG*]

Your link is not working, perhaps this one will?:

http://chronicfatigue.stanford.edu/

GG