Good morning… Below is a page that will appear in MPNforum Magazine February 15.
It’s being sent to you for a first response to the MPN-Related Fatigue (MRF) Survey. The survey form (see below) is live and data will be collected and become part of the first MRF database, a critical component of the Fatigue Project.
Please do complete the questionnaire. It takes just a few minutes… And pass along any feedback either in the Comments box, below, or e-mail any member of the Survey team.
Many thanks… this is a critically important work affecting the life quality of nearly all MPN patients.
The 2013 Survey — Help beat 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.
Nearly simultaneously, the discovery of a gene mutation on the short arm of 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.
Internationally, since first announcement of this collaborative effort, MPN patients have already started to enroll in The Fatigue Project.
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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Comments on: "Beat Fatigue – the 2013 Survey" (3)
The form asked to rate the last 24 hours fatigue on a scale from 0 – 10, but there was no zero which I would have chosen.
The question “How long have you had any MPN?” Would have been better worded, “How long have you been diagnosed with any MPN?” I am convinced that I had one many years before diagnosis, but can’t say for sure. I certainly had some crazy/freaky symptoms that were either ignored by my MD or not reported to one, but are probably relevant.
I didn’t mention it in the survey, but stress/happiness is definitely related to my bouts of fatigue.
I have completed the form. I just want to say that I am fortunate to own my business and I work at it daily. Some days are worse than others but on the whole I think that keeping busy is a very important part of therapy for fatigue.
Thx, I’ve completed it. I’d be grateful for any updates / reports. Many Thx Sue
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