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Ale Frost (Tess), Ph.D. | @RemissionBiome Profile picture
@ales_frost
May 1 • 8 tweets • 3 min read Twitter logo Read on Twitter
These results are what I was expecting.

I asked the question because that night I started reading the original papers from the 50s & they made me open to the possibility of the answer being no. 1/8
What I read didn't sound like the #MECFS that I know. There're many possible reasons for that. Maybe the disease morphed into something more similar after the original case reports. Maybe issues like PEM were actually there, but they didn't know to look for them. 2/8
Maybe since they originally thought it was poliomyelitis they ended up looking for signs & symptoms that come from that. 3/8


4/8


5/8
@RenzPolster said this. 6/8

I want to learn the history now. #MyalgicEncephalomyelitis #CFS #MECFS

I previously would just roll my eyes when people would argue about definitions, but it's more than that if there's legit pathophysiological differences. (I don't know if that's true yet, but it could be) 7/8
Thanks to everyone who sent me resources! I'll share interesting info as I go through them.

And apologies to folks who have been trying to tell me this for 2 years. Sorry for all my eye rolls. 😉 😆

8/8

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More from @ales_frost

Ale Frost (Tess), Ph.D. | @RemissionBiome Profile picture
Apr 29
I ended up looking at some of Leslie Simpson's work last night. He first suggested that less deformable red blood cells could lead to symptoms of ME in 1986! It was replicated in 2019 in #MECFS & #LongCOVID in 2021

researchgate.net/scientific-con…
"As long ago as the 1980s, Dr Les Simpson in New Zealand found that the red blood cells of patients with CFIDS were deformed & when deformed, they cannot get through the capillary bed, causing pain"

investinme.org/ArticleJ21-Rol…
"Even though Ramsay had described remissions as a feature of ME, and gave examples of the remission/relapse cycle, remissions are unrecognised by American investigators and are little recognised in other countries"

investinme.org/ArticleJ21-Rol…
Read 5 tweets
Ale Frost (Tess), Ph.D. | @RemissionBiome Profile picture
Apr 29
I didn't know about #MECFS until fall 2020 when I came across @jenbrea & found out about her remission from CCI surgery. I dug into all of the structural issues & agree with @karenlubell that it's likely not rare in our population & should be investigated.
This presentation by @microbeminded2 & @MBVanElzakker explains how CCI/structural issues could lead to the same symptoms as #MECFS caused by immune issues

There's also a lot of great info on @jenbrea & Jeff Wood's sites.

jenbrea.medium.com

mechanicalbasis.org
Read 4 tweets
Ale Frost (Tess), Ph.D. | @RemissionBiome Profile picture
Jan 10
For my friends IRL who started following me recently:

I didn't know what #MECFS was until the end of 2020. I had heard of Chronic Fatigue Syndrome, but didn't actually know anything about it & assumed it was a bs Dx. It's not. Many biological abnormalities have been found.
The more I started digging into the science, the more evidence I found. It's currently diagnosed clinically, but that doesn't mean that there aren't objective measures of biological abnormalities.

cdc.gov/me-cfs/healthc…

me-pedia.org/wiki/List_of_a…
It's shocking when you learn about it. 25% of the people who have #MECFS are severe or very severe. Many of those are bedbound, needing full time caregivers, unable to communicate, extremely sensitive to any sensory input.

pubmed.ncbi.nlm.nih.gov/33925566/
Read 6 tweets
Ale Frost (Tess), Ph.D. | @RemissionBiome Profile picture
Oct 22, 2022
A 🧵 about my MCAS, w/?s for you all

Woke up w/"my hive" today, 2" under my sternum, always in the same spot.

In 2005, I woke up 1 day & my knees were swollen. That was the start of a year of constant hives & swelling (pics aren't me, but it looked like this)
A few days in to the start of the hives, I went to urgent care. I was visiting a new place, so thought I might be allergic to something. Their best guess was that I had valley fever and they said it would go away on its own.
cdc.gov/fungal/disease…
But, it kept coming...on different places on my body each day, but always something. If I tried to open a bottle, my hands would end up so swollen I couldn't move my fingers. My eyes would swell completely shut, or my lip so big that I could barely eat or drink.
Read 15 tweets
Ale Frost (Tess), Ph.D. | @RemissionBiome Profile picture
Sep 7, 2022
Why am I obsessed with Cell Danger Response and sickness behavior? I've been learning about evolutionary medicine for like 13 years now. I came across it during one of my nearly bedbound points when I wanted to find anything that could help me. 🧵 Image
There are many different ways to think about illness from an evolutionary perspective. Image
I have mostly studied mismatch. I don't talk about it much in here, bc it can come off as, "just change your diet & exercise & you'll feel better." I don't believe that. I have been removing mismatches for 13 yrs & didn't get significantly better until surgery and medications. Image
Read 11 tweets

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