Stanford 2016 Newsletter

[RL_sparky]

I don't believe this has been posted yet.

Stanford 2016 ME/CFS Newsletter

Excerpt:

Future Research and Endeavors:

ME/CFS Brain and Tissue Bank:
It is with some hesitation that we publically announce our decision to begin the regulatory process to accept brain donations from deceased ME/CFS patients. We plan to establish a robust tissue and brain bank to help us better understand the nature of ME/CFS. More information on this is forthcoming.

Homebound/Bedbound ME/CFS Patient Study:
The Stanford ME/CFS Initiative is committed to improving the lives of all patients with ME/CFS, including those that are home- and bedbound. It is imperative that we conduct studies that seek to address the challenges faced by these severely ill patients and learn more about their treatment needs. Within the next year we will commence, enrolling homebound patients for a formal study.

Universal Pathogen Discovery:
Building upon preliminary data we collected from our GEISD-Pathogen Discovery study, we are planning to launch a comprehensive pathogen discovery research. In collaboration with Stephen Quake, DPhil, we will take samples of blood, cerebrospinal fluid, lymph nodes, bone marrow, and NK cell compartments.
With our partnership with Linda Nguyen, MD, gastroenterologist and motility expert at Stanford, we will collect gastrointestinal biopsies. This study will be the first comprehensive effort to search for pathogens in sites never attempted before.

 

[msf]

Is it just me or have they been in the process of submitting that pathogen paper for a several months?

 

[Invisible Woman]

For those of you in the UK who don't already know: there is a form available from the ME Assoc. that gives permission to have samples taken after death for ME research.

 

[RL_sparky]

Is it just me or have they been in the process of submitting that pathogen paper for a several months?

If you look at the 2015 newsletter under Ongoing Research it looks like not much has advanced over the last year with a number of studies their working on.
https://med.stanford.edu/content/dam/sm/chronicfatigue/documents/MECFSNewsletter_Spring_2015.pdf

 

[msf]

I thought it was in the 2015 newsletter! Perhaps they have got too many balls in the air.

 

[CBS]

I appreciate that it seems as though research moves at a snails pace. Well designed (and adequately funded) studies take an immense amount of work. From concept to data collection can take years and data analysis to publication can easily add another year.

That said, I do want to point out that the group at Stanford is steadily moving forward with a large number of projects.

Most recently, Stanford began recruiting subjects for a neuroendocrine project that was first proposed in late Spring of 2014 (unfortunately, study is only open to people residing in the San Francisco Bay Area).

http://med.stanford.edu/content/dam/sm/chronicfatiguesyndrome/documents/Ad for Cases.pdf

ETA: http://forums.phoenixrising.me/inde...cruiting-females-age-18-45-in-bay-area.45403/