kate

"Advice for caregivers from caregivers- who are sick themselves" in a quote box against a red background. Small photo at the top with Good Advice on a road sign.

Today is #NationalCaregiversDay! We have resources available to help the caregivers in our community that we will be sharing today.

First, we want to point to the reality of caregivers who are also dealing with illness themselves. Check out their advice here: www.meaction.net/_files/ugd/b...

Passed someone's yard with one of those big skeletons for Halloween dressed in Santa pants and a Santa hat, a sack dragging on the ground, like he's Apocalypse Santa, out doing yard work.

As someone in the replies notes, this is NOT the Internet Archive, which is a whole nonprofit and whose facilities I have visited in person. (I forget that people do not know this stuff.)

Wikipedia blacklists Archive.today, starts removing 695,000 archive links If DDoSing a blog wasn't bad enough, archive site also tampered with web snapshots.

The headline does not convey how completely batshit this story is. The Archive Today (archive.ph etc) admin weaponized the site's captcha to attack a blogger who wrote about them and *altered archived screenshots* as part of the attack.

arstechnica.com/tech-policy/...

IT HASN'T EVEN BEEN A WEEK!

Grey Shetland pony with snow around and the sea behind

After weeks of gales the islands are enjoying snow, sunshine and stillness #Shetland

One worm saying "You look like shit, Dave," to a second worm that is coiled up in a pile that resembles poo.

😂😂

#ChronicIllness

✏️Creator Unknown

With sorrow, we announce the passing of FOBAZI M. ETTARH 1989 - 2026. Fobazi changed so many lives with her friendship, love, and brilliance. She was so loved, and leaves behind a powerful legacy. We thank Fobazi's community for their support over the last several months of her illness. A private burial will be held for family. We will be in touch with further information about a future Celebration of Life event, as well as ways to support Fobazi's family and legacy.

Half-assed is better than nothing.
On low spoon days, I have broken the bathroom into three zones and cleaned one zone a day until it was done. Or I will give it a quick clean to make it less grubby and do a full clean when I have the energy to do so.
Often, starting is the hardest part.

This makes me sick to my stomach.

A lot of big supposedly-prestigious research hospitals are actually pretty bad

Here in Oregon, OHSU doesn't take POTS patients. Like straight up if your doctor tries to refer you to cardiology or neurology there with "POTS" in the referral reasons, they'll say "sorry we don't treat that".

People saying "but if we defined 'middle class' that way there would basically BE no middle class in America!!"

Me:

You see "super coupon" saver shows featuring (always women) saving/getting $40k/year(!!) in groceries, but what's overlooked is that this is often FULL TIME JOB. One mom said she easily spent 40/hrs week coupon clipping and deal shopping. For real. Convenience fees work because you're exhausted

Exoskeletons! Bionic leg braces! The wrong trousers!

Most of us do not want these things. The loss of being bipedal isn’t what grieves us.

It’s the fact that abled people just cannot help themselves making exclusionary decisions that DON’T NEED TO BE. Everyone benefits from ramps.

Did you eat? Take your meds? Drink water? Remind someone you love them?

It's a laying down & chilling with a HR of 110bpm kind of day

#MECFS #POTS #NEISvoid

"Our recent Invisible Illness Report became the first comprehensive economic impact study, revealing that 94% of people with ME/CFS experience career changes with an average 42.8% income reduction. We weren't just advocating for health — we were documenting an economic crisis."

#NotJustFatigue

In Her Own Words: Elizabeth Ansell documents economic impact of chronic fatigue syndrome - The Business Journals Elizabeth Ansell transformed her chronic fatigue syndrome diagnosis into advocacy that secured congressional recognition and NIH funding for the overlooked disease.

#MECFS
"My unplanned career pivot taught me that the most impactful organizations often emerge from solving problems others ignore. As I navigated the healthcare system, I discovered a patient population abandoned despite representing a larger market than multiple sclerosis and Parkinson's combined"

Statements like below in this pre-print lead straight back to graded exercise bc few providers understand their pts level of function or trust when pts say they can’t exert more than they are. Which leads providers to feel their pts are difficult or non-compliant, further eroding care.

Putrino’s own clinical guidance treats PESE and PEM as equivalent which is a huge problem and leads exactly here.

This is dangerously disrespectful of what we know about the PEM disease process as well as how motivated & socialized patients are to push ourselves. When we say this advice is dangerous, THAT’S KNOWLEDGE WE LEARNED IN THE MOST DEVASTATING WAY POSSIBLE. PLEASE DON’T DO THIS TO ANYONE ELSE 😩

We don’t need to be encouraged to rearrange how we spend our finite capacity in ways that steal from our function & make us sicker. We don’t need to be advised on how to rearrange deck chairs on the titanic. What we need is real research & real treatments, so we can have real capacity increases.

I'm just a girl, standing in front of the entire medical establishment, begging them to stop being a bucket of gaslighting fake PVC body-unsafe jelly dicks and actually listen to the patient in front of them and not the patient in their mind

Isabella Wranå won gold for curling, but should've for this video

Article has links to call your officials if you live in Indiana

I feel like I need to print this out and highlight and annotate it.

It doesn’t HELP me by giving me treatment avenues but even given I’m not a scientist so much of this makes SENSE to me. Like, it intuitively feels like “yes! This is what’s going on my body!” I could absolutely be wrong ofc

ID: A flier for the event reads, "The Sick Times: Free Webinar, The Long COVID Op-Ed. Help Break the Stigma. February 19th, 7-8:15pm ET. Learn how to pitch and share your story with tips from expert guests. Hosted by Miles Griffis and Betsy Ladyzhets. Below are the headshots of three guests, Torie Bosch, First Opinion Editor, STAT. Madeline Miller, Best-selling author. Funmi Okunola, MD, Co-founder Long COVID the Answers. A button at the bottom reads, "Comment "RSVP" for a registration link!"

Join us for a free webinar! The Sick Times editors @mileswgriffis.bsky.social and @betsyladyzhets.bsky.social — plus special guest speakers — will demystify the process of writing and pitching op-eds and essays on Long COVID. Register now: us06web.zoom.us/meeting/regi...

While certain mast cell mediators could potentially be responsible for “third spacing,” in an interview in September of 2017, Dr. Afrin told me that he believes that episodes of acute abdominal pain/bloating may be more connected to dysautonomia of the bowel muscles.6 If you’re familiar with the Driscoll Theory7, the Vagus nerve plays a very important role in bowel motility and could be connected to this problem. If GI transit time is delayed and the intestinal contents are left sitting stagnant, this could in theory cause a putrefaction-like process to occur which could influence levels of certain mast cell mediators and inflammation in the intestinal tissue, further exacerbating pain and swelling. This is one theory that connects abdominal angioedema and MCAD, but it has not been researched.

Afrin's take

#MCAS
#ThirdSpacing

"Third spacing” can cause dangerous complications such as circulatory shock, life threatening airway swelling, severe dehydration, impaired organ function, and gastrointestinal obstructions from swelling.4 “Third spacing” may be triggered by anaphylaxis in some cases for patients with MCAD4 (though anaphylaxis is not the mechanism with HAE episodes, which are considered non-allergic). Abdominal angioedema has been associated with the use of angiotensin-converting enzyme inhibitors (ACE inhibitors) used to manage high blood pressure.5 However, there are numerous other mechanisms that can trigger attacks of “third spacing.”

From:
mastcellsunited.com/2018/02/23/h...