Author: jess

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”).

| jess

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)

| jess
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.

Cort Johnson ,from Health Risings, response to my post:

| jess

My post is below, Corts response is after.

One thing is for sure, we are very fortunate to have Cort Johnson in our corner. His website ‘Health Rising‘ really helps keep the community informed and he breaks down complex studies into more manageable language for us. He is amazing, especially when you consider he, himself, has ME/CFS! Thank you Cort for all you do for us!!!

My post:

Also, Nath does sound more helpful than most, so it is good to have him in our corner. One thing you said about long covid getting all the attention that it deserves irritates me. I’m not saying that people with Long covid don’t deserve research and treatment, etc..but we with ME/CFS (and fibro) have been waiting for decades (for some of us, (I’m curently16 years in) , and I feel we are being treated as less important and less real and less deserving of treatment than the long covid sufferers and this is so incredibly wrong and yet I saw it coming a mile away. Oh well, maybe we will benefit in a backhand kind of way from the research on long covid, but it does not take away the sting. Also, it seems many long covid people , in time , do recover…I haven’t met many me/cfs people who truly do…we just endlessly adapt and re-adjust to our limitations. Sorry if this post seems negative, it just seems like we are the longest long haulers out thereReply

  • Cort Johnson
  • Cort Johnson on May 7, 2022 at 9:28 amWe are the really long, long haulers for sure! It’s really something to ask of a community that has been waiting for so long to wait longer as another similar disease gets the attention and gets the funding that we’ve been working towards for so long.I mean, c’mon! That’s the place we’re in, though. We just have to keep reminding ourselves that the long-term trends are good, that what benefits long COVID is going to benefit us, and that in the end, we’re going to reap real rewards from all the attention given to long COVID. In other words, we have to still be patient.It’ll be interesting to see how many people with COVID-19 come down with ME/CFS. It was always going to be a small number – 5%? 2% 1%? – but so many people have come down with COVID-19 that the total number looms large indeed.
Success! Nath Reports the Big ME/CFS Intramural Study Points to Possible Treatment Options