A picture is worth a thousand words….
And this is a picture of MRF, any way you look at it.
In less than three weeks, with the cooperation of the MPN Research Foundation, MPD Support, MPD Voice and MPNforum, 889 MPN patients completed a brief scratchpad questionnaire designed to give the Mayo Clinic team under Dr. Ruben Mesa a leg up on their creation of a formal research design to explore options to relieve MRF. Myeloproliferative Neoplasm-Related Fatigue is the single greatest complaint of patients suffering from these rare blood cancers. The attempt to determine clinically tested means to relieve this fatigue opens the possibility of a much higher quality of life for all blood cancer patients. Dr. Claire Harrison of Guy’s and St. Thomas’ NHS (UK) is a collaborating participant in the UK.
Dr. Robyn Emanuel joins the Mayo Clinic MRF research team.
Dr. Robyn Emanuel a key investigator in the Mayo Clinic – Scottsdale MPN program, has been crucial to the validation of methods employed by the Mayo Clinic to assess symptom burden among essential thrombocythemia, polycythemia vera, and myelofibrosis patients. She is Collaborator and Co-Investigator, the Myeloproliferative Neoplasm Quality of Life International Study Group (MPN-QOL ISG). Mary Cotter, a Connecticut-based Counselor, is coordinating the Fatigue Project list for MPNforum. That list is one basis for clinical trial recruitment as efforts to abate MRF increase. (To join the Fatigue Project send a blank e-mail to MRFproject@gmail.com typing Fatigue as the subject.)
Comments on: "The MPN-Related Fatigue Project: MRF UPDATE" (5)
As a long term MF patient I’ve have been fortunate. However, fatigue has always
been my daily issue. I live within a hour’s glass of energy & have to expend my
energy as such. Any over use of energy reduces the next days events.
In my case, fatigue is clearly related to my need for a transfusion. When my hematocrit rises to around 35, following a transfusion, I have much more energy than when that number falls to 30 or below. For decades when I was in the early stages of PV, my hematocrit was kept above 50.
I would like to see this data collected on patients who have just received transfusions and collected again when their hematocrit or hemoglobin falls.
For me, this happens presently at around 18 days after a transfusion. I suspect the difference in energy levels and its relation to higher blood counts would be telling.
Such data might serve as supportive evidence for patients who must wrangle with insurance companies that balk at paying for transfusions, arguing that the patient’s blood counts are not sufficiently low enough to justify the cost of a transfusion.
My Dr. recently stated that fatigue had always been my #1 complaint. Good to see it researched!
We’re really on the way!