Just My Honest Opinion

Leading up to the trip, I couldn't know just how it would be. Would I be debilitated and have a headache and nausea right on the day of the flight? And would I end up with days in the bed, while my husband saw the sights of the tropical island? Life with systemic exertion intolerance disease (SEID) means you never know just how much function, how much health, you'll have. Yet, do we just do nothing at home? Never travel? Live nothing of a life year after year? Most, if they have a mild or moderate case, know that they must find any morsel of experience they can tolerate, as things may never get better and possibly will get worse. So, my husband and I scheduled and saved for our once-a-year vacation, this time to Key West. Knowing my limitations, I tried to add some strategies to lessen the "exertion intolerance" effects: I added a couple days to the trip so I would not be trying to see it all and doing too much I arranged for wheelchair transport in connectin...

The following is an email letter I sent to Dr. Walter Koroshetz, director of the NINDS. I copied Dr. Vicky Wittemore and Dr. Avindra Nath. The history of NIH and ME/CFS has not been good: dentists on grant review panels, continued excuses to why no effort has been made to make filing ME/CFS grants attractive to researchers (just complaining that not enough researchers are filing good grants and telling patients they need to get the researchers to file grant applications), and having reviewers say physiologically-based studies are not worthy of funding because they believe ME/CFS is not physiological. These actions, over decades, made the patients lose confidence and trust in the NIH's mission being applied fairly in the case of ME/CFS. Contention developed. Recent activity at the NIH made us (I am a patient) think maybe a real change is happening at the NIH, that better research and more effort is being made. I understand that when a mistake was made in...

Those who follow my blog know I was disheartened at the negative reaction to the Institute of Medicine's report suggesting "systemic exertion intolerance disease" be the new label for "ME/CFS." I predicted that insisting on "myalgic encephalomyelitis" will leave us with the status quo, which means the disease will continue to most commonly be known as "chronic fatigue syndrome." My prediction, thus far, has proved true. I have spoken to others who share my view and actually prefer "SEID." I said, "Shouldn't we also be advocating for what we think is best?" I was told, "Give it up. The ship has sailed. It's over. Move on. Science will solve it." This greatly disturbs me to the point of tears. We have this opportunity, and we are squandering it. How many more years must we be stuck with harmful disease names? The reason the name wasn't changed in 2003, our last opportunity, was because science would...