We’ve known for some time that the chief complaint of patients suffering from MPNs and their therapies has been Myeloproliferative Related Fatigue (MRF), a chronic and sometimes paralyzing fatigue.
80% of blood cancer patients rank fatigue above pain as their chief complaint. Ever since the work of Dr. Ruben Mesa, Joyce Niblack and others was published six years ago, the extent and nature of MRF in our population has been known and stratified.
Little has been done to explore means to relieve that fatigue. Because the causes of such fatigue are so various and unknown, effective interventions are rare and doctors find themselves dealing less with the primary effect of MPNs on their patient’s quality of life and more with such treatable symptoms as splenomegaly, pruritis, and pain.
Now The Fatigue Project, a cooperative program among doctors, patients, caregivers, and healthcare professionals, has organized to do something about it.
The first step is a preliminary survey to provide information on patient-developed strategies to overcome fatigue.
Then, spearheaded by Dr. Ruben Mesa at the Mayo Clinic and his team including Matt Clark, PhD, Dr. Robyn Emanuel, and Amy Lou Dueck, PhD — and supported by Dr. Claire Harrison of Guy’s and St. Thomas’ in London and Zhenya Senyak and psychiatrist Dr. Michael Goldstein of MPNforum — the program moves to its second step, a formal questionnaire to be distributed on-line.
It is anticipated the result of all this data crunching will be the design of a clinical trial to test therapeutic alternatives. What will arise immediately is renewed consciousness of the depth of the MRF problem and shared knowledge of possible relief strategies.
You can participate in The Fatigue Project in two ways right now.
(1) Join The Fatigue Project. It’s a simple as sending an e-mail to MRFproject@gmail.com and typing FATIGUE in the subject line. That’s it. You’ll get progress reports, notices of findings and recruitment notices for trials.
(2) Fill out the MPN-Related Fatigue survey questionnaire. It will take just a few minutes and is anonymous. You can get to that questionnaire here.
By working together, we can help stamp out fatigue on our way to an MPN cure.
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© Zhenya Senyak and MPNforum.com, 2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly 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.
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