The secret killer embedded in every MPN is our most common symptom: Fatigue.
Have no doubt about it. Fatigue kills. It ruins our quality of life, contributes to job loss, isolation, depression, weight loss, wasting, and death.
No one has done more to assess MPN fatigue than Dr. Ruben Mesa of the Mayo Clinic and now he’s willing to help us discover what we can do to overcome fatigue using rigorous scientifically tested strategies.
The first step is for us to simply share ANY technique we now use to overcome fatigue.
(1) Just describe how fatigue impacts your life… and (2) how you manage to function despite fatigue…(3) What are some ways you have found that help you become alert and active.
We will immediately benefit by sharing this information with MPN patients and caregivers in an MPNforum article and start accumulating the data necessary for Dr. Mesa and others to consider research design and testing.
The object of this step is to assemble stories, strategies we patients have employed to beat fatigue so researchers can select variables to test clinically to derive highly specific activities we can immediately employ at whatever disease stage we’re at.
Please send your description to: ourMPNforum@gmail.com.
A few minutes of your time to write up your own experiences in simple language can literally help save someone’s life.
Please don’t delay. Before we can get help. Before we can get a study designed and funded we need to take this first critical step. Share your best techniques to beat fatigue whether short or long-term.