MPN(D) Related Fatigue – MRF – Survey

Fatigue is a big issue with patients who have MPDs, and perhaps worst in patients with myelofibrosis (MF), but it is also present in the majority of people with essential thrombocythaemia (ET) and polycythaemia vera (PV). Many things can contribute to this, including the disease, medications that an individual is taking or sometimes the change in blood counts. Fatigue can have a major impact on our daily lives, reducing some people to having to stay in bed for days on end! So what can we do about it?

The MPN Forum magazine published a piece on the Fatigue Project in the November edition mpnforum.com/the-fatigue-pr... the reason for this research is to help us select an optimized therapeutic path to lead us out of a fatigue dominated life. With the help of Dr Ruben Mesa of the Mayo Clinic a survey has been put together to identify the effect of fatigue on day to day living, once the results of the survey have been collated they will be assessed by the Mayo Clinic to structure means to test the relative effectiveness of one or more strategies to relieve fatigue.

If you would like to complete the survey please follow this link, docs.google.com/forms/d/1h4... the survey is anonymous and only takes a couple of minutes.

11 Replies

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  • Thats a great idea - will do it, thank you.

  • Done. thanx Maz x

  • Will do! My haemo doesn't seem to acknowledge the link! I have PMF.

  • Done. I do hope we will hear the results from this survey. Any sound advice re ameliorating

    Fatigue would be gratefully received.

  • I'm so pleased that a study is finally being conducted concerning this life-changing side effect of MPNs. Although I am one of the lucky ones with fewer syptoms than most, my biggest challenge has always been the fatigue which can be difficult to deal with. It would be so interesting to hear how other sufferers manage to deal with this. I await the results with interest!

  • Thank you to you all for completing the survey, I will keep you updated with the results. Maz

  • Completed

  • Done. Thank you

  • Completed. Many thanks Maz.

  • I have filled in the survey. So it isn't just me! :-)

  • have filled in many thanks

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