International MPN News, Science & Opinion

Fatigue? We have the power tool.

 Myeloproliferative Neoplasm Related Fatigue

power tool

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 tiredwith 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), ash posterwere 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.

power tool

 
Take me back to the Contents

© MPNforum.com, 2014. Unauthorized use and/or duplication of this material without express and written permission is prohibited. Excerpts and links may be used, provided that full and clear credit is given to MPNforum.com with appropriate and specific direction to the original content.

Comments on: "Fatigue? We have the power tool." (1)

  1. Bonnie Kaye Evans said:

    I thought Joe had participated already in this survey so I went to it and saw that it was completely different Than the one he had done in the past. I am betting more people think they already did it. It is now done. Thanks.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: