Open (MA, USA) “Brain Scan Study [PET-MR] of ME/CFS, 2023, VanElzakker

[DokaGirl]

I hope pwME who are able, will volunteer for this study.

I don't know if they will get copies of their results, but if they do, this might go some way towards indicating a biomedical problem, which may in turn be of assistance with evidence of disability.

 

[Tom Kindlon]

I've just paid for a Facebook ad to try to recruit for this study.
See this thread here: https://www.s4me.info/threads/advoc...studies-that-are-struggling-to-recruit.35898/

 

[Creekside]

Way too far for me, and maybe it's for Americans only. I think a fair fraction of the population of NA lives on the east coast, so there should be some volunteers.

 

[duncan]

I thought it said Boston area. It might help if they'd cover travel expenses, then they could recruit outside Boston metro.

 

[Tom Kindlon]

https://twitter.com/user/status/1718437900918882716

 

[Helene]

It seems odd that there is a shortage of volunteers as the Massachusetts ME/CFS Association is a large active group.

 

[Eddie]

I participated in this study in the Long Covid arm but I fulfill the criteria and consider myself to have ME/CFS as well. I was not located in Boston but was still able to participate. They do give you a copy of some of the scans but it's hard to know what to do with them. Michael VanElzakker was great, very understanding and willing to explain the study at length.

 

[NelliePledge]

Welcome to the forum @Eddie its good to hear from people who have taken part in studies

 

[Dolphin]

New-ish webpage
https://rally.massgeneralbrigham.org/study/me_cfs_patients_need

https://twitter.com/user/status/1833902147718521095