International MPN News, Science & Opinion

Mayo Clinic launches clinical fatigue study

 MRF had its way
tired
 …now it’s our turn!

Historic MPN fatigue intervention study rolls out today.

MPN Related Fatigue (MRF) saps our energy, costs uncounted millions in lost income, destroys health and the will to resist disease progression. A little more than a year ago, MPN patients, caregivers and healthcare professions launched the Fatigue Project.

Recognizing that MPN Related Fatigue (MRF) was the single greatest complaint of blood cancer patients, an initial survey was undertaken by MPNforum and the Mayo Clinic to prepare the groundwork. The survey, drawing over 1000 responses, explored the landscape of that fatigue and successful interventions.  A summary and analysis by the Mayo Clinic team of the first 823 responses was presented at 2013 ASH in New Orleans. (LINK)

The critical next step required developing a comprehensive web-based tool that would provide the scientific basis for a full scale attack on MRF.  The Mayo Clinic team under Dr. Ruben Mesa and Dr. Robyn Emmanuel, including psychologists, statisticians, su rvey designers and consultants worked for months to create this tool that would win the approval of its IRB and do the job.

Today, it’s here:

Sick and tired of feeling sick and tired?  Help wipe out MRF.  Here’s how to strike the first, meaningful blow.  Head for the…

The Myeloproliferative Neoplasm Fatigue Trial Research Study

Complete the survey and post this link   https://mayoclinicsrc.qualtrics.com/SE/?SID=SV_8lgfxg1vNjq8h8N  on your Facebook pages. Post it to your patient e-mail Lists and e-mail it to your support groups. The more completions, the greater power this study will have to develop the final payoff:   Scientific testing of highly specific fatigue reduction interventions based on individual MPN conditions.

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