Noticing my own weird behaviors — confusions, naps, depression — I started wondering how we were all doing.
MPN patients face special challenges in a time of long pandemic? Meds to order, tests to take, phlebotomies, transfusions, docs to see. Generally, we’re more susceptible to the covid virus and far less flexible in our need for medical services.,.
Add to that the effects of isolation. 28% of adult Americans are believed to live alone. I imagine the number is substantially greater among MPN patients. Most of us aren’t diagnosed with a hematological disorder until later in life.
Taking all that into consideration – an older, vulnerable community of blood cancer patients, further isolated by lockdowns and fear of contagion– how are we doing?
Surprisingly, not bad.
This is by no means a scientific study. The sample is small, the responses self-reported. And not stratified by demographics, phenotype or risk status of disease. At best this survey is a probe toward developing a formal study. We received 174 responses from the MPN Facebook group and MPNforum universe. . The graphics in this report were done after 150 response, the max we thought we might get in the four or five days. Based on prior studies, it feels essentially accurate. The direction had been clear throughout, and the graphs didn’t much change as responses were tabulated
In any case here’s the link to the FULL 174 report. When you get to the site click on the RESPONSES tab to see the numbers and graphics.
CONCLUSIONS
MPN or not, these two years have had serious effects that will unquestionably affect health outcomes down the road for all of us, infected or not. The hospital and medical office pile up not only leaves few scheduled visits available but exhausted physicians, nurses and staff to attend to routine healthcare
Physically it didn’t seem to matter much. 80% of us feel not much or not at all physically impacted by two years of pandemic.
The scales sllpped the other way when we probed for emotional and psychological effects. How we feel. Feelings may not permit the digital precision of physical biomarkers, but are the actual world we live in.. We don’t feel OK. Most of us feel a lot worse than we did two years ago. It could be the pandemic could be progression of disease, it could be the Holiday season with yet more uncertainty due to another covid variant surge. Almost half of us, 41% ,experience negative emptional and psychological effects
The good news is the great majority of MPN patients (81%) were able to handle routine maintenance.
Of course the pandemic is far from over and there’s no guarantee this fourth surge in the 2021-2022 winter won’t give way to a more virulant variation. But to date, with vaccines available and new treatment options, here’s the picture so far
MPN patients face special challenges in a time of long pandemic? Meds to order, tests to take, phlebotomies, transfusions, docs to see. Generally,
MPNforum Magazine 
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