Elana Hashman: I am very sick
I have not been able to walk since February 18, 2023.
When people ask me how I'm doing, this is the first thing that comes to mind.
"Well, you know, the usual, but also I still can't walk," I think to myself.
If I dream at night, I often see myself walking or running. In conversation, if
I talk about going somewhere, I'll imagine walking there. Even though it's been
over a year, I remember walking to the bus, riding to see my friends, going out
for brunch, cooking community dinners.
But these days, I can't manage going anywhere except by car, and I can't do the
driving, and I can't dis/assemble and load my chair. When I'm resting in bed
and follow a guided meditation, I might be asked to imagine walking up a
staircase, step by step. Sometimes, I do. Other times, I imagine taking a
little elevator in my chair, or wheeling up ramps.
I feel like there is little I can say that can express the extent of what
this illness has taken from me, but it's worth trying. To an able-bodied
person, seeing me in a power wheelchair is usually "enough." One of my
acquaintances cried when they last saw me in person. But frankly, I love my
wheelchair. I am not "wheelchair-bound" I am bed-bound, and the
wheelchair gets me out of bed. My chair hasn't taken anything from me.
***
In October of 2022, I was diagnosed with myalgic encephalomyelitis.
Scientists and doctors don't really know what myalgic encephalomyelitis (ME)
is. Diseases like it have been described for over 200 years.1
It primarily affects women between the ages of 10-39, and the primary symptom
is "post-exertional malaise" or PEM: debilitating, disproportionate fatigue
following activity, often delayed by 24-72 hours and not relieved by sleep.
That fatigue has earned the illness the misleading name of "Chronic Fatigue
Syndrome" or CFS, as though we're all just very tired all the time. But tired
people respond to exercise positively. People with ME/CFS do not.2
Given the dearth of research and complete lack of on-label treatments, you may
think this illness is at least rare, but it is actually quite common: in the
United States, an estimated 836k-2.5m people3 have ME/CFS. It is
frequently misdiagnosed, and it is estimated that as many as 90% of cases are
missed,4 due to mild or moderate symptoms that mimic other
diseases. Furthermore, over half of Long COVID cases likely meet the
diagnostic criteria for ME,5 so these numbers have increased
greatly in recent years. That is, ME is at least as common as rheumatoid
arthritis,6 another delightful illness I have. But while any
doctor knows what rheumatoid arthritis is, not enough7 have heard
of "myalgic encephalomylitis."
Despite a high frequency and disease burden, post-viral associated conditions
(PASCs) such as ME have been neglected for medical funding for
decades.8 Indeed, many people, including medical care workers,
find it hard to believe that after the acute phase of illness, severe symptoms
can persist. PASCs such as ME and Long COVID defy the typical narrative around
common illnesses. I was always told that if I got sick, I should expect to rest
for a bit, maybe take some medications, and a week or two later, I'd get
better, right? But I never got better.
These are complex, multi-system diseases that do not neatly fit into the
Western medical system's specializations. I have seen nearly every specialty
because ME/CFS affects nearly every system of the body: cardiology, nephrology,
pulmonology, neurology, opthalmology, and, many, many more. You'd think they'd
hand out frequent flyer cards, or a medical passport with fun stamps, but nope.
Just hundreds of pages of medical records. And when I don't fit neatly into one
particular specialist's box, then I'm sent back to my primary care doctor to
regroup while we try to troubleshoot my latest concerning symptoms. "Sorry,
can't help you. Not my department."
With little available medical expertise, a lot of my disease management has
been self-directed in partnership with primary care. I've read hundreds of
articles, papers, publications, CME material normally reserved for doctors.
It's truly out of necessity, and I'm certain I would be much worse off if I
lacked the skills and connections to do this; there are so few ME/CFS experts
in the US that there isn't one in my state or any adjacent state.9
So I've done a lot of my own work, much of it while barely being able to read.
(A text-to-speech service is a real lifesaver.) To facilitate managing my
illness, I've built a mental model of how my particular flavour of ME/CFS works
based on the available research I've been able to read and how I respond to
treatments. Here is my best attempt to explain it:
- After a severe (non-COVID) infection, an ongoing interaction between my immune system and my metabolism have stopped my body from being able to do aerobic respiration.10
- I don't know why or how, but my mitochondria don't work properly anymore.11
- This means that if I use too much energy, my body isn't able to make enough energy to catch up, and I have severe symptoms over the next few days as my body tries to manage the consequences.
- Those symptoms aren't limited to fatigue: I've developed flu-like symptoms and even fevers, limbs so heavy they felt paralyzed, tachycardia in response to even the slightest activity.
- [US] A Long COVID "moonshot" effort, drafted in April 2024 by Senator Sanders. Contact your representatives and encourage them to support it. Ask them to ensure the effort includes support for ME/CFS and other related conditions and PASCS.
- [Canada] National ME/FM Action recommended participation in public budget consultation processes and made a submission. Though the 2024 consultation is closed, you can still contact your MP to improve awareness and advocate for budgetary support. It may also be worth contacting your MLA to advocate for better PASC care in provincial clinics.
- [UK] Action for ME is advocating for a cross-Government Delivery Plan for ME/CFS care in England. Contact your MP and encourage them to support it.
- [Other] MEAction also regularly hosts government advocacy campaigns in the US, UK, and Scotland.
After the unfortunate and somewhat surprising 
And while we're at it: everyone using Libreoffice should give a virtual hug to rene@ for
taming that beast since 2010 and OpenOffice.org before.
We can t wait to welcome hackfest attendees to A Coru a! Stay tuned for further
details and outcomes of this unconventional and unique experience.
In January I've removed tens of thousands of web pages on
www.debian.org. Have you noticed it?
In the past
From 1997 onwards, we had web pages for security announcements. We
had to manually prepare a .data and a .wml file which then generated a
web page for each security announcement (DSA or DLA). We have listed
the 6 most recent messages in a short list that was created from these
files. Most of the work that went into the Debian web pages was
creating these files.
Our search engine often listed the pages with security announcements instead
of a more relevant web page for a particular topic.
Preparation
At DebConf Kosovo (2022) I started with a proof of concept and wrote a
script, that generates this list without using the .data/.wml files in
the Git repository, but instead reading the primary sources of
security information
Hi,
Keeping my promise for monthly bits, here's a quick snapshot of my first
ten days as DPL.
Special thanks to Jonathan for an insightful introduction that left less
room for questions. His introduction covered my first tasks like expense
approval and CTTE member appointments thoroughly. Although I made a
visible oversight by forgetting to exclude Simon McVittie from
the list, whose term has 
We are very excited to announce that Debian has selected seven contributors to work
under mentorship on a variety of
A short status update of what happened on my side last month. Maintenance
and code review keep to be the top time sinks (in a positive way).
It s been around 6 months since the GNOME Foundation was joined by our new Executive Director, Holly Million, and the board and I wanted to update members on the Foundation s current status and some exciting upcoming changes.
Time really flies when 
