Recruiting Patients for Gene Data Study wi... - Ramsays Disease

Ramsays Disease

567 members470 posts

Recruiting Patients for Gene Data Study with Nancy Klimas at Nova (*no travel necessary!*)

TheLadyOfShalott profile image

Join the M.E Gene Study at the Institute for Neuro Immune Medicine, Nova Southeastern University.

** It is ALL COMPLETELY WEB-BASED, meaning even the very severely affected can participate because there is *NO TRAVEL INVOLVED*. **

All the details are available at - nova.edu/nim/research/mecfs...

Nancy Klimas talks about the study here - drive.google.com/file/d/0B9...

Please pass this information on to EVERYBODY you know with M.E. as Nancy is looking for data from AT LEAST 10,000 patients!

[23andme is one of the companies providing test kits for UK residents. Just 'spit and post!' - 23andme.com/en-gb/]

Written by
TheLadyOfShalott profile image
TheLadyOfShalott
To view profiles and participate in discussions please or .
13 Replies
Ian123 profile image
Ian123

Gene testing companies are in the USA which limits participation.

TheLadyOfShalott profile image
TheLadyOfShalott in reply to Ian123

23andme is just one of the companies available in the UK - 23andme.com/en-gb/

Ian123 profile image
Ian123 in reply to TheLadyOfShalott

£125 then

At this time, people who live in the UK cannot participate in research

23andme.com/en-gb/research/

TheLadyOfShalott profile image
TheLadyOfShalott in reply to Ian123

I'm in the UK. I was accepted onto the Nova study and there have been no problems with contributing my data.

Looks like they're referring to 23andme's own research on that link you gave but you could email Nancy/Nova directly to ask. 23andme is one of the kits they recommend for the study and Nancy Klimas is well known/respected amongst M.E researchers.

Ian123 profile image
Ian123 in reply to TheLadyOfShalott

I am well aware of Nancy Klimas and her work and I was following the link provided should I find myself with £125 spare.

Mistymooring profile image
Mistymooring

Mailed for secure link onto site.

TheLadyOfShalott profile image
TheLadyOfShalott in reply to Mistymooring

So glad you're interested in contributing to this! Just so you know, my results took 2+1/2 months, so they take a while but worth it! :-)

readerlist profile image
readerlist

UK biobank information available for international researchers meresearch.org.uk/our-resea... without the cost for participants of purchasing a DNA profile.

TheLadyOfShalott profile image
TheLadyOfShalott in reply to readerlist

I contacted the biobank a while ago but couldn't contribute because I lived too far away. Considering there are approx. 60,000 patients who are very/severely affected with myalgic encephalomyelitis, dotted all over the country, who can't contribute to the biobank because they live too far away and can't travel etc, Nancy's study is an excellent opportunity to participate in research. Besides Ron Davis's Big Data Study with the End ME/CFS Project, nobody is studying the severely ill patients, and this study at least allows Nancy the chance to look at data belonging to the very/severely ill.

Halflife profile image
Halflife

Mailed awaiting reply thank you for posting.

TheLadyOfShalott profile image
TheLadyOfShalott in reply to Halflife

You're more than welcome! :-)

Stormchaser profile image
Stormchaser

Thanks for sharing.

TheLadyOfShalott profile image
TheLadyOfShalott in reply to Stormchaser

You're most welcome! :-)

You may also like...

Research into CFS/M.E : Sleep study -London

interested in taking part in a sleep study based on sleep problems with M.E.

Work Capacity Assessment

Pensions has updated its evidence-based protocol on M.E. for healthcare professionals carrying our...

A young girl with severe M.E

with M.E. and really is at a loss of what to do for her daughter.. She has joined the various M.E...

Severe Myalgic Encephalomyelitis

http://www.meresearch.org.uk/our-research/ongoing-studies/severely-affected-me-patients/

Progressive brain changes

A long term study of white matter changes http://onlinelibrary.wiley.com/doi/10.1002/jmri.25283/full