When people mistakedly think ME/CFS cannot kill, think again. I feel sorry for this poor young woman and others like her that could have been saved if the care given was appropriate. If she had been given a feeding tube that surely would have helped.



Question of the day: How can we, in the good ol’ U.S. of A. , be having a baby formula shortage that is causing mothers to fear and worry about whether or not they can feed their babies? How can that even happen here? (And before people argue that the moms could breast feed, there are many reasons that that doesn’t work for everyone, also, people should have a choice on that personal decision.) I breastfed, but at a certain point couldn’t keep up with ‘supply and demand’ , plus was working part time, so supplemented with formula. It is crazy to think that we as a country are adding to the stress of new moms and possibly endangering infants. Maybe instead of trying to take away womens abortion rights, (which makes my blood boil that government has ANYTHING to say on that), we should try and feed the babies who are here right now? Gee, what a concept? I mean, WTF? Shouldn’t all moms have affordable access to baby formula? Isn’t that a basic human right? Once again, thank you D.tRump for adding to yet another shitshow in your wake. (from the New york Times: “Donald Trump exacerbated the situation with a trade policy that made it harder to import formula from Canada. These policies benefit American formula makers, at the expense of families”).

A couple excerpts from The N.Y.Times below:

“It gets really scary,” Carrie Fleming, who lives near Birmingham, Ala., told The Times. Her 3-month-old daughter, Lennix, can tolerate only one brand of formula, and Fleming could not find it anywhere near her. She finally located four small cans in New York — for $245.
In Oceanside, Calif., north of San Diego, Darice Browning was recently despondent after failing to find formula for her 10-month-old daughter, Octavia, who cannot eat solid foods. “I was freaking out, crying on the floor and my husband, Lane, came home from work and he’s like, ‘What’s wrong?’” Browning said, “and I’m like, ‘Dude, I can’t feed our kids, I don’t know what to do.’”
For many families, baby formula is a necessity. Some babies cannot drink breast milk — or enough of it to stay healthy — while many lower-income mothers work hourly jobs that do not provide time to breastfeed.

In loving Memory of my dear friend Mark who lost his battle with ME/CFS a little over 2 years ago. Mark , You are dearly missed. He would have been 53 today. Yes, in some cruel and twisted irony, his birthday was May 12th (National M.E./CFS awareness day)

When Jodi (may she R.I. P) stated a difference between ME and CFS, the two terms are merged now=ME/CFS. Most of us who truly fit the ME/CFS illness, loathe the term ‘chronic faigue syndrome’ and the gross mischaracterization of it by many people. It is Sooooo much more than fatigue.