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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Need help with information for my DR

AlleyCat

Senior Member
Messages
105
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

Northern USA
Messages
6,035
Location
Northern USA
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!
 

Mary

Moderator Resource
Messages
17,291
Location
Southern California

*GG*

senior member
Messages
6,389
Location
Concord, NH
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
 

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  • UNREST.Dartmouth.poster.QR3_.jpg
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*GG*

senior member
Messages
6,389
Location
Concord, NH
"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/
 

AlleyCat

Senior Member
Messages
105
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

Senior Member
Messages
6,305
Location
Pacific Northwest
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.. .)
 

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  • Summary of recent significant findings in ME-cfs research - Updated May 2017.pdf
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