International MPN News, Science & Opinion

Fatigue Project — A Progress Report… Survey Form

The Fatigue Project Survey —  Help Beat MRF (MPN-Related Fatigue)!

First returns confirm dominance of lMPN fatigue symptom

Early returns of  MRF survey confirm intensity of  fatigue symptom

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. tiredThe 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.Burden of Fatigue  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 Joyce Niblack, mesafullstandsmileDr. 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.  Fatigue QuestionnaireIt 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?

 finger pointing    You can get started right here

Please. We’re counting on you.

– ZS

 
Take me back to the Contents

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Comments on: "Fatigue Project — A Progress Report… Survey Form" (2)

  1. Eagerly awaiting the report.

  2. Cecilia Johnston said:

    I suffered from fatigue when first diagnosed, but minimally now. I have PV, JAK2 +, for three years, now on 6-monthly bleeds of 300ml, 100mg aspirin daily. I take Coenzyme Q10, 100mg daily (Ubiquinon) and have felt much better since starting this about a year ago. I am also able to take regular exercise without breathlessness, I walk every day and sometimes cycle, also mountain walking from time to time, and I am 70 years old: I think this also helps beat fatigue. I filled in the survey but I don’t think it is specific enough.

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