The Fatigue Project Survey — Help Beat MRF (MPN-Related Fatigue)!
In November, 2006, the MPN world was shaken. The results of a study spearheaded by an MPN patient advocate and her friend, a young Mayo Clinic doctor, were published on-line. The study established for the first time that, for four out of five patients suffering from this rare blood cancer, MPN Related Fatigue (MRF) is the primary contributor to a poor quality of life,
The study, “The burden of fatigue and quality of life in myeloproliferative disorders” was revolutionary. Not only was it internet-based, it helped establish the now standard (MFSAF) MF Symptom Assessment Form and cleared the way for research to address the multi-dimensional causes of our disease and its therapies.
A year earlier, the discovery of a gene mutation on chromosome 9, a gene involved in blood production, took most of the oxygen in research labs and clinics. The JAK2 V617F mutation was found to be almost universal in PV patients and common in half the patients with ET and MF. This breakthrough created a research gold rush in drug development and clinical trial siphoning interest and funds away from other MPN therapeutic areas.
With the successful emergence of Jakafi in 2011 and the imminent emergence of new JAK inhibitor drugs in Phase III clinical trial — Science can now turn its focus on fatigue, the main distress suffered by MPN patients. Building on the heavy lifting done six years ago by
Joyce Niblack, Dr. Ruben Mesa and their associates, Dr. Srdan Verstovsek, Dr. John Camoriano, and others — plus the 1179 MPN patients participating in the study — provides a solid foundation to explore means to relieve that fatigue.
Once again, Dr. Ruben Mesa has stepped up to help us organize this effort. So far he is joined by Dr. Claire Harrison (Guy’s and St. Thomas’), Matthew Clark, Ph.D., a Mayo Clinic psychologist and Dr. Michael Goldstein, a psychiatrist, MPN patient and MPNforum writer. Dr. Mesa added two members to the team last week Amylou Dueck, Statistician, and Dr. Robyn Emanuel, creator of the Total Symptom scale used in our survey.
Now it’s our turn…
There are two ways you can drive the research that can help us all.
(1) Join The Fatigue Project. It’s a simple as sending an e-mail to MRFproject @gmail.com or ourMPNforum.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. Results will be tabulated and sent along to Dr. Mesa and the professional team for review and insight into development of a structured research plan.
Together, we can beat fatigue. If not now, when? And if not you… who?
You can get started right here
Please. We’re counting on you.
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