The MRF (myeloproliferative neoplasm related fatigue) Project is the 2nd phase of a fatigue trial being run by Dr Ruben Mesa, The Mayo Clinic in Arizona, Robert Emmanuel, Zhenya Senyak, MPN Forum Magazine and other MPN Groups. You are invited to participate in this project by completing an online survey, which is completely anonymous.
Dr Mesa explains in a video that the study is being conducted to assess how the level of fatigue experienced can be alleviated by various strategies including exercise, nutrition, supplements and medication, the next stage will be to create a clinical trial to test effective means to relieve MPN related fatigue which is experienced by 80% of people with MPNs.
The video with Dr Mesa explaining all about the survey can be viewed by following this link: youtu.be/4-QEiGizsQc
The survey takes approximately 10 minutes to complete and is completely anonymous, by taking part you will be helping the whole MPN community to benefit from the results.
I submitted my survey yesterday having received it from MPN. It is easy enough to complete, and I believe that anything that can help with the incredible fatigue that happens so suddenly, has to be good. Hope many people will fill it in.
Just done mine. As bruddery says so easy to complete, took about 10-15 mins at the most. If it helps to find cures for fatigue or even just treatments it is well worth doing! Thank you! Aime
Hi Ballycool, I know I put 0 when I completed it because I don't drink coffee or the other drinks they listed, perhaps you could try again and maybe use a capital O instead, if you still can't do it let me know and I will check with the Mayo clinic for you. Regards, Maz.
Hi Maz, tried both to no avail, so if you can find out from the Mayo clinic I would be much obliged as I can't move on with the survey until these questions are answered.
Hi Ballycool, I've spoken to the Mayo Clinic and they have said that some people have experienced some technical issues with the survey, they don't know why they are looking into it, so they have said that if typing in 0 doesn't work for you then you will have to leave it blank, it won't accept typing in the word zero or nil, but it should work if you just leave it blank, they said if you still have problems they are happy to help you direct, so if it doesn't work can you let me have your email address to pass to them, you can email it to me at maz.cd@mpdvoice.org.uk or you can put it in a private message. Good luck, Maz.
Hi Maz, success! I did have an answer re the coffee - I have the occasional cup but it would only work if all the answers were blank so missed it out. It was good to be able to move on and complete the survey. Thank you for your help, I did not want to be beaten by it as it is so good to have the fatigue taken seriously, it is the only problem I have so far. All the best, Ballycool
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