Need help with information for my DR

[AlleyCat]

I have a wonderful primary care Dr. She has asked me to give names of researchers that are making real progress with ME/CFS. I'm hoping someone on here can help me point her in the right direction. She wants to help me and keep up on the latest research.

 

[Shoshana]

Hi @AlleyCat

I suggest you use a different title for this post of yours, such as Current Researchers names and info please
or something more like that.

And I would put it into the ME/CFS Discussion section, or a Section on Research or researchers.

OMF is one, with Dr Ron Davis heading that up at Stanford.
I know you can get as very good list to give her!

 

[Judee]

https://forums.phoenixrising.me/ind...ting-second-annual-community-symposium.61968/

This post has some information and different researchers' names.

 

[Rebeccare]

The ME/CFS Guide for Clinical Practitioners is written by some of the leaders in the field, and your doctor can also look through the references to see the research (and researchers) cited.

 

[Mary]

Nancy Klimas, M.D. at Nova Southeastern University in Florida - she is doing some amazing research on ME/CFS and Gulf War Illness: https://www.nova.edu/nim/clinic/dr.-nancy-klimas-bio-page.html
https://www.nova.edu/nim/useful-links.html

She's going to be doing a small trial of ME/CFS patients starting this fall I believe.

Also Open Medicine Foundation (mentioned above): omf.ngo

By the way, that's an amazing doctor you have - one in a million! (or so)

 

[Mary]

This link talks about several things, including Nancy Klimas' upcoming clinical trial: https://www.healthrising.org/blog/2...tisite-klimas-reset-chronic-fatigue-syndrome/

 

[Judee]

This link talks about several things, including Nancy Klimas' upcoming clinical trial: https://www.healthrising.org/blog/2...tisite-klimas-reset-chronic-fatigue-syndrome/

This is so good to read. I'm so happy to hear about these changes happening.

 

[*GG*]

I went to the attached event below, I was pleasantly surprised with the New info I was presented with! Is your Dr willing to prescribe Mestinonin off label? I will be asking my Dr at my upcoming visit. There was a lady there that said she was able to go back to work due to the medicine.

I might just need to do that due to a lawyer screw up, so perhaps it will work for me, and I can put my talents and skills back to work for all of society!

Dr David Systrom at Brighams and Womens Hospital was the Dr who made this discovery, I believe.

GG

 

[*GG*]

"Solve ME/CFS Initiative (SMCI) and our partners are initiating a new ME/CFS Research Fund at Brigham and Women’s Hospital (BWH) in Boston, MA. The establishment of this fund supports the continuation of Dr. David Systrom’s ME/CFS research.

This work will further our understanding of the autonomic, peripheral neuropathy, and cardiovascularfeatures of ME/CFS. In other words, this research focuses on the involuntary nervous system, nerve pain in the hands and feet, and the heart and blood vessels."

Cont'd

https://solvecfs.org/announcing-smcis-new-mecfs-research-program-at-brighams-and-women-hospital/

 

[Shoshana]

@AlleyCat
Maybe ignore my first suggestion.

These posts are great!

 

[AlleyCat]

Thank you! I'm going to forward these on to my Dr. And yes, she is great. It took 5 years to figure out what was wrong with me and she always believed me. She admits she doesn't know everything but is willing to learn which is half the battle.

 

[Learner1]

There's also this slightly dated summary of recent research a member put together that you can shsre with her. (I've found my labs match much of what the researchers have found.. .)