Alex

@admiringbog

person with ME/CFS professional slug

644 Siguiendo746 Seguidores1107 Publicaciones

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Alex@admiringbog· 5d

Reminder that JK Rowling hates people with #ME/CFS as well. I’m starting to think she just loves to bully people. People with ME are easy targets, and that was especially true before COVID, when I’m assuming she wrote most of The Ink Black Heart.

Goodreads book review Rebecca's review:
A damning one star review of Robert Galbraith (JK Rowling) book, The Ink Black Heart, which includes two characters with ME/CFS "presented through deeply harmful stereotypes... a whiny,
manipulative liar or illness-faker... and an emotionally abusive patriarch..." "What is most painful is that Rowling clearly knows people with ME. She has seen these symptoms in real life, yet chooses not to believe them."

Alex@admiringbog· 20d

“It only takes a SMALL gap in your immune function to let this virus pop out…like Covid.” Reminds me of the COVID is mild now rhetoric: bsky.app/profile/shar...

Moffat adds: "It only takes a small gap in your immune function to let this virus pop out.
Having a respiratory disease like Covid or flu ... getting a bad sunburn, having type 2 diabetes or even treatment with steroids (which suppress immune system responses) can lead to an eruption of shingles." She also believes, "something else is happening on a very large scale that is putting people at higher risk for reactivation - the declining health of humans in general.

Alex@admiringbog· May 23

#plank4forme

PLANK4ME IN 4 EASY STEPS!
1. Record yourself planking
2. Upload it online
3. Tag at least one person to do the challenge themselves
4. Donate to the Open Medicine Foundation (if capable) through the link in our bio

WHAT DO YOU MEAN PLANK?
There are two ways you can plank!
Option 1: If you're someone without M.E. who wants a physical challenge, you can do a classic fitness plank. *Note, this version of the challenge is NOT recommended for those with M.E.
Option 2: Those with ME. (and anyone else!), you can do a plank like from the planking trend in the 2010's! Those in bed, plank from bed! Get creative, but be safe! Only plank in areas that are safe, and do not climb up anything to plank.

Alex@admiringbog· May 14

I love my roborock saros 10. It technically is just wiping with a wet rag, but with really good results. Floors look almost perfect aside from some tight spots it can’t reach. This was how dirty it was after a month of use (me doing nothing). About 1000 square feet.

Bottom of the robot vacuum, a bit dusty.

Alex@admiringbog· May 14

That’s probably true but he still defended it. And it might be worse that he tried to make it sound like it wasn’t a psychological test. I also didn’t like how he criticized people with ME for having very reasonable concerns. virology.ws/2024/07/21/t...

It is also unjustified for health officials to chastise patients for criticizing the study, as Avindra Nath, the senior and corresponding author, has done.
During a public presentation of the findings, he said: "When you doubt our intentions and pick apart every single word, you also tear us apart. It causes pain and suffering on both sides and demoralizes us and shatters our goals." Putting aside the issue of intentions, it is essential to "pick apart" words if they are, like "preference," so poorly and ineptly chosen.

Alex@admiringbog· Apr 27

Such a good idea:

"I told my daughter I'd love to have her energy for just one day — to run on the moors, to swim, to hike like I used to," Catherine said. "It made me quite emotional. The general public don't see what ME/CFS is. It's a disabling, misunderstood illness that takes away energy, independence

Alex@admiringbog· Apr 23

The Paris Review 253

Katie Peterson
Elegy as the Four Seasons
Summer is never
Fall is again
Winter is forever
Spring is when

Alex@admiringbog· Apr 23

I thought they buried the far more interesting stat—“nearly half of the doctors witnessed a patient experience serious adverse health consequences, including the progression of a disease or missed diagnoses, because [health systems aren’t connected].” Yikes.

The latest research from CMA and Abacus also found 99 per cent of respondents reported that health systems that are not connected to one another prevents them from being able to easily share patient records, test results or clinical notes.

It also found nearly half of the doctors witnessed a patient experience serious adverse health consequences, including the progression of a disease or missed diagnoses, because of those disconnects.

Alex@admiringbog· Apr 21

Taking a minute to look back at this event. It was good:

We ask you to fathom how the U.S. government was so unprepared for the pandemic's explosion of
ME/CFS. Our government has willfully neglected this disease for decades, ignoring the patient communities' insistent pleas for investment into the disease. Now, we are paying the price with Long COVID.

Alex@admiringbog· Apr 16

I thought this part where the police “couldn’t get him a car” was an obvious lie. They chose not to.

Years ago, a disabled member of a local church made what was supposed to be a quick trip to Walmart. "Wheels was late picking him up, so he called, and Wheels said it was too late," recalls Jones, who leads Open Door Church and serves as co-chair of the local interfaith coalition BUILD. "He was in a wheelchair, the police couldn't get him in a car. He had to stay the night at Walmart overnight because there
was no way to get home."

Alex@admiringbog· Mar 31

I have a long standing fantasy of turning Groat Road in Edmonton back into a ravine. It was built in the 1950s. You can’t tell by the picture, but it’s surrounded by a lot of housing and businesses. A girl can dream. The picture is from this blog: donnasrivervalley.com/2020/09/24/g...

A curving road in a deep ravine. It’s a sunny fall day and the leaves are changing colour.

Alex@admiringbog· Mar 27

Does anyone understand what ‘get out of jail free card’ means here?

With the rise of new tools in molecular biology, it's becoming clear that viruses and other pathogens can remain in the body or otherwise affect its workings for a surprisingly long time. "Doctors often use this as a 'get out of jail free' card," admits Dr.
Chris Smith, a virologist at Addenbrooke's Hospital in the U.K. and host of the Naked Scientists podcast. But, he continues, "we are beginning to realize that there is this whole world out there that we had absolutely no insight into.”

Alex@admiringbog· Mar 27

The Alberta government has said they won’t implement the new CSA standard (requiring N95s in healthcare), but the legislation mentioned here seems to imply they have to implement it. Interesting. thetyee.ca/Analysis/202...

An employer must ensure that respiratory protective equipment used at a work site is selected in accordance with
CSA Standard Z94.4-02, Selection, Use, and Care of Respirators.

Alex@admiringbog· Mar 1

Tale as old as time:

At the start of her final three-month hospital admission in 2022, the doctors seemed hopeful and driven. But the longer the admission continued, the less engaged she says they became. "They started to say things like my
'perceived inability to walk' or, 'perceived abdominal pain," she says. "My condition suddenly became all in my head."

Alex@admiringbog· Jan 30

Proponents of “body-mind” theories will usually defend themselves by saying that they think ME is a real illness and not purely psychological. And that’s exactly what the doctors starving Savannah are saying. #ME/CFS #saveSavannah

They just say they don't believe it's psychological. They say they think it's a real chronic illness. They just...won't feed, hydrate, medicate, treat, listen to or help me.

Alex@admiringbog· Jan 30

Unsurprising, Savannah’s doctor is a GET quack.

On Monday, Savannah reported that the reason for this persistent gaslighting seemed to finally fall into place. A staff member mentioned Dr Gerald Coakley - a rheumatologist who worked at QEH for over 20 years (until 2023). Coakley is another Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) proponent. He has practiced these at his private 'Fatigue Clinic London' since 2007.

Alex@admiringbog· Jan 21

I don’t think this is surprising at all. Public health messaging has gone to great lengths to make people think repeat infections were inevitable, not dangerous for most people, and even good for building immunity. They pushed “immunity debt” which is an anti-vax talking point.

We were surprised to learn that after repeated viral illness infections, parents were actually less likely to vaccinate their children. Persistent illness contributed to a sense that infection was both inevitable and mild, often not even worth preventing. Some parents were also skeptical of the novelty of the COVID-19 vaccine compared with more established vaccinations, despite assurances from health-care professionals.
These parents did not hold "anti-vaxer" beliefs; instead they believed that viral illness season was inevitable, and of little risk to themselves and their children.

Alex@admiringbog· Jan 19

I listened an episode on ME/CFS from RFK Jr’s podcast it was really alarming stuff. This is RFK Jr speaking:

You know, one of the threats to the public health service on this disease was that it appeared at the same time as HIV AIDS, and that there were a number of scientists out there who said it's actually the same disease. When a gay person get it, it's called HIV AIDS. When a woman gets it, it's called chronic fatigue syndrome.

Alex@admiringbog· Dec 21

“The name sounds like something a truck driver would get: chronic fatigue syndrome.” There’s an interesting thesis that could be done with the collected bigotries in the history of ME/CFS. Truck drivers 🧐 With some alt text, not the whole article:

Chronic fatigue syndrome leaves researchers unsure of virus type

Associated Press Writer
ATLANTA (AP) - The symptoms sound like the flu — except they don't get better. The name sounds like something a truck driver would get: chronic fatigue syndrome.
It has been two years since what some cynically dubbed "the yuppie Nu" was recognized as a real disease with a real name. Today, researchers still don't know who has it, what to do about it, or what causes it — although most now believe it unlikely that Epsiein-Barr virus is responsible, as some studies once suggested.
'"I don't-think we're very far along with understanding the cause of the syndrome," said Paul Cheney, a Char-lotte, N.C.,
physician who helped
pioncer treatment of syndrome sufferers in the mid-1980s.
Today, the federal goverment is midway through an effort to determine the prevalence of chronic fatigue syn-drome. Researchers are zeroing in on possible factors
- including immune
disorders and viral infections - that may lead to treatment.
A study released Sept. 4 said evidence of a lype of virus known as a retrovirus was found in the blood of 23 of 30 victims of the syndrome.
"It's very interesting and it definitely needs to be followed up," said Ann Schluederberg, chief of the virology branch of the National Institutes of Health. She said a more direct cause-and-effect must be established.
There are tens of thousands of Americans - maybe more — who believe they have chronic fatigue syn-drome. Some of them almost certainly do not; the symptoms can mirror those of psychological illnesses such as depression.
But some of them do have it.
"It definitely exists," said Dr. Walter Gunn of the Centers for Disease Control. "We are finding people who meet the case definition.
Chronic fatigue syndrome is char-
acterized by the debilitating,
long-
lasting fatigue that gives it its name.
The fatigue is coupled with a group of related symptoms,
including heada-
che, sore throat, fever, weakness and muscle and joint pa…

Alex@admiringbog· Dec 1

Early on, they were framing it the other way around, that Long COVID was more severe than anything that came before. I kind of forgot about this until I was reading The Invisible Kingdom:

"What we're seeing is an entirely distinct syndrome," David Putrino told me, one that tends to be "way more debilitating and severe" than others like it, but similarly mysterious.

Alex@admiringbog· Nov 22

@thesicktimes is the first news source I’ve seen mention ME/CFS as one of the conditions connected to EBV

A new mechanistic study identifies Epstein-Barr virus (EBV) as a potential trigger of the autoimmune disease systemic lupus erythematosus. Past research has shown that EBV may drive multiple sclerosis, as well as play a role in Long COVID and ME.

Using advanced techniques and cell cultures, the authors discovered that EBV can convert
B cells, a type of white blood cell vital to the immune system, into tyrants that reprogram other immune cells to attack tissues in the body.
"This is the single most impactful finding to emerge from my lab in my entire career," said one of the authors in a press release. "We think it applies to 100% of lupus cases."

Source: Shady Younis et al., 2025, Science Translational Medicine
DOI: 10.1126/scitranslmed.ady0210

Alex@admiringbog· Oct 31

Btw, some provinces have said that they won’t implement the new CSA standard, so it’s a good time to write your health minister in support of it. #alberta #ontario #canada #covid

"There are no plans to adopt or implement such a requirement in Ontario," said Jackson Jacobs, a spokesperson for Health Minister Sylvia Jones.
Alberta's health ministry also has no plans to make masks mandatory.
"At this time, decisions regarding mask use will continue to be guided by site-level leadership, provincial health agencies, and operational teams based on local context and clinical judgment," a spokesperson for the province's Ministry of Primary and Preventative Health Services.

Alex@admiringbog· Oct 31

Some signs things are shifting because ignoring Covid isn’t working:

Bar-Yam can see dramatic progress on a variety of fronts. The French government has new air quality standards for school classrooms, while Australia has invested in air filters for its schools. The United Nations recently held a one-day conference on the importance of clean indoor air. The city of London, England, is spending 200 million pounds cleaning up the air in its schools.
And so on.
Here in Canada, Bar-Yam notes, the country's crowded hospitals stopped mandatory masking in 2023, but B.C., Prince Edward Island and New Brunswick have
returned to proactive masking. Last summer the Canadian Standards Association, a non-
profit organization that sets safety standards for the workplace, proposed significant changes for health-care institutions based on what the science says on aerosols.

After widespread consultation with healthcare workers, it recommended key changes in mask guidance:
Respirators such as N95 masks need to be worn by health-care workers at all times in health-care facilities. The blue surgical masks known as "splash guards" aren't good enough for workers to use as respiratory protection. Proper masks should be supplied free of charge in health-care facilities to everyone. And hospitals should require specific assessments for airborne diseases to determine minimum respiratory protection.

Alex@admiringbog· Oct 25

I remember her being quite brazen about this in the past. From 2012:

Then there's Wildrose Party of Alberta Leader Danielle Smith, who claimed just over a year ago that the science wasn't settled on climate change.
She heads the Official Opposition in the Alberta legislature when she should have been laughed out of political existence.

Alex@admiringbog· Oct 25

I’m always taken aback by the assertion that science is self-correcting. Not in a reasonable amount of time it isn’t. Often it self-corrects because the people who were wrong finally retire. virology.ws/2025/10/25/t...

I have also been deeply disturbed by the rampant and flagrant corruption in the editorial and peer-review practices of major medical journals, including those in the Lancet and BMJ stables. Not only have these august publications routinely failed to catch egregious methodological missteps, they have also routinely failed to take appropriate steps to fix problems once they've been pointed out. In many instances, their response to legitimate criticism can only be described as a blatant "fuck you."

Alex@admiringbog· Oct 20

To boost ME research in Canada, CIHR has invested $2 million to continue supporting an ME research network over the next five years. Since 2019, the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) research network has brought together researchers, clinicians, and patient partners to advance ME research. The network is co-led by Dr. Alain Moreau at the Centre hospitalier universitaire Sainte-Justine in Montréal alongside a team of scientific and lived-experience leaders from across Canada and around the world.

Alex@admiringbog· Oct 19

I thought this was a weird comment. I haven’t seen any researchers say that covid is correlation rather than causal.

CARE for Long COVID Act has four co-sponsors, including Sen. Tammy Duckworth (D-IIl.) who proposed her own legislation for long-haulers. She likens the current stage of long COVID to the past situation Vietnam veterans faced with presumptive
conditions linked to Agent Orange exposure.
"Men who served in Vietnam, had five times the rate of prostate cancer than the men at the same age who didn't serve in Vietnam, so you did have a link, but you had correlation," said Sen. Duckworth to News 4.

Alex@admiringbog· Oct 15

open.substack.com/pub/thegaunt...

You could call the situation unreasonable.
You could call the situation our government has put us in unreasonable. You could direct your frustration over said unreasonable, untenable situation upward, where it belongs: at the government, not downward, at struggling sick people, who have no choice but to engage with COVID safety practices including masking.

Alex@admiringbog· Oct 1

#MillionsMissing

How many people are as sick as I am? Few of us are publicly known, but surely there are staggering numbers of people as sick as I am.
It's too easy to get this sick with ME/CFS which is usually a one-way street; An unavoidable downward spiral. Even if the IOM estimates are correct and one quarter of the
"up to 2.5 million" are severely ill, that's "up to" 625,000 severe ME/CFS patients just in the U.S.

Alex@admiringbog· Sep 29

I tried to book through the government website and got filtered out by age. It didn’t ask any of the other questions that are supposed to qualify for phase one.