MPNforum Magazine

 Myeloproliferative Neoplasm Related Fatigue

Now it’s our turn.

Years from now will MPN patients look back at us with gratitude?

We were the struggling generation of MPN patients who took the time to fill out surveys, who struggled through mind-numbing fatigue to take care of business and participate in research that might not benefit us at all. 

Joyce Niblack trail-blazed the exploration of myeloproliferative neoplasm fatigue with Dr. Ruben Mesa back in 2007 with their work on The Burden of Fatigue.  The MPNforum team  built on that study,

We  weren’t content with describing fatigue, we wanted to do something about it, help create some intervention. A drug, an exercise, a magic wand. We started The Fatigue Project. Today’s the day we get to finish it.

The first step was a survey of patients and our multiple tactics to beat back what Zhenya Senyak called MRF —  myeloproliferative neoplasm related fatigue. The Fatigue Project drew in hundreds of volunteers in an international effort coordinated by MPNforum’s Mary Cotter.

A thousand of us came together with the help of the Mayo Clinic (Scottsdale) team, MPN Research Foundation, MPD Voice in London, and Facebook pages.  For patients that meant a lot of missed naps, a lot of extra effort from some people who were literally sick and tired.

The results, analyzed by a team led by Dr. Robyn Emanuel. Mayo Clinic (Scottsdale), were presented at the American Society of Hematology meeting in New Orleans (2013).

Even as crowds gathered around the MRF Fatigue Project poster, the Mayo Clinic interdisciplinary team was refining the next step:  Design and production of a power tool to dig deeply into the causes and effects of MRF.

This on-line survey tool would help isolate our MRF by type of MPN, by medical and psychological components.  The object:  Mount a  scientifically valid interventional clinical trial to test means to abate MRF.

That tool is here.

The time is now. 

We can beat back MRF,  the single worst symptom of blood cancer. 

Let’s get to work.   

Just click on the image and start making history.

 
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