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  • šŸ“… Updated 8 months ago
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Royal Free 1955
@rfh1955.bsky.social
about 4 hours ago
The Black Country Evening Mail, England. 16th October 1998. An editorial on a boy whose care was the subject of a legal battle in Solihull (England) in 1998. #cfsme #mecfs #myalgicencephalomyelitis #myalgice
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ME/CFS San Diego
@mecfssd.bsky.social
about 4 hours ago
New from Nature: Scientists are learning to fix faulty mitochondrial DNA, offering hope for rare genetic diseases. While not specific to #MECFS, it's a big step for understanding energy metabolism, something long suspected to play a role in ME/CFS. šŸ”— www.nature.com/articles/d41...
Faulty mitochondria cause deadly diseases: fixing them is about to get a lot easier

www.nature.com

Faulty mitochondria cause deadly diseases: fixing them is about to get a lot easier

CRISPR-based tools can’t easily access the DNA in these organelles, but researchers are finding other ways in.

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Jessica Ellis
@baddestmamajama.bsky.social
about 5 hours ago
Yeah, another key feature to this denial is pretending the worlds didn’t change with the advent of covid, or that it’s gone back to exactly how it was before. Like pretending a volcano hasn’t gone off and that lava in your yard is just a new kind of plant.
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Jessica Ellis
@baddestmamajama.bsky.social
about 5 hours ago
There are excellent complex conversations about how best to push for Covid mitigations and goals and science between Covid Conscious people every day. But these are people who have decided not to mask, have a smidgen of awareness or shame about it, and desperately need a way to prove it’s fine.
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Jessica Ellis
@baddestmamajama.bsky.social
about 5 hours ago
This is not a good faith ask about the current science on Covid, or masking best practices, or how to implement safety, or how to best protect vulnerable people, any more than a child saying ā€œSO I GUESS I SHOULD JUST STAY IN MY ROOM FOREVER, HUH??ā€ The use of forever gives away the game here.
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Jessica Ellis
@baddestmamajama.bsky.social
about 5 hours ago
This is a rhetorical trap. If you say ā€œyes, the best practice would be for everyone to mask until we have better vaccines and treatments for long covidā€ they will either say HA! SEE YOURE CRAZY! Or ā€œwell no one wants to mask forever, so you should just give upā€
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Tom Kindlon
@tomkindlon.bsky.social
about 6 hours ago
3/ "So who would be the ideal friend? For me, a friend who checks in regularly, asking how I am and genuinely wanting to know, just as I am curious to know about their lives. A friend who listens without trying to fix." #MEcfs #CFS #PwME
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Jessica Ellis
@baddestmamajama.bsky.social
about 6 hours ago
Masks do not block airways, and he does not wear one at home because he’s not exposed to the public at home, although he did wear one 24/7 when I had Covid, and did not get it as a result. Are you hitting the bottom of the barrel any time soon? Because your arguments truly can’t get much sillier.
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Tom Kindlon
@tomkindlon.bsky.social
about 6 hours ago
2/ "it only takes a couple of crash reactions after these visits to create huge anxiety for future attempts. Many friends simply cannot understand this and the adjustments needed are sometimes more than they are willing or able to make. Many friends simply drift away" #MEcfs #CFS
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MarĆ­a Richardson
@diatoma.bsky.social
about 6 hours ago
A #JohnVsJonVsME @johnvsjonvsme.bsky.social #GreatestMEdicalScandal #Halloween MEme I made last year about this ignored horror (and how it’s my villain origin story) @juliadoubleday.bsky.social @ryankenacts.bsky.social @johngreensbluesky.bsky.social @markruffalo.bsky.social My spirit is tired 😭
#JohnVsJonVsME MEme that shows a town on a cliff covered by a virus and people with Long Covid POTS ME etc rock climbing on the cliff
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Harriet Carroll: Long Covid Scientific Consultancy
@angryhacademic.bsky.social
about 6 hours ago
Inhibition of allergic & non-allergic histamine secretion from rat peritoneal mast cells by calcium antagonists pubmed.ncbi.nlm.nih.gov/6… Off label, theyre also sometimes used for Raynaud's and psychiatric conditions like bipolar disorder—both may also have mast cell involvement
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Harriet Carroll: Long Covid Scientific Consultancy
@angryhacademic.bsky.social
about 7 hours ago
Effect of antihypertensive treatment with valsartan or atenolol on sexual activity & plasma testosterone in hypertensive men pubmed.ncbi.nlm.nih.gov/1… "Testosterone was reduced by atenolol (from 18.2 to 13.8 nmol/l) but was not affected by valsartan (from 17.6 to 18.3 nmol/l)"
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Harriet Carroll: Long Covid Scientific Consultancy
@angryhacademic.bsky.social
about 7 hours ago
Beta blockers may reduce testosterone: Beta-blocker effects on sexual function in normal males pubmed.ncbi.nlm.nih.gov/2… Total and free testosterone reduced with atenolol, metoprolol, pindolol, and propranolol, more so with the latter two as non-selective drugs
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Julia Doubleday
@juliadoubleday.bsky.social
about 7 hours ago
It’s unfortunate and makes COVID incredibly difficult to control - symptomatic measures alone cannot properly mitigate at a population level. The govts decision not to communicate this information well is downstream of their unwillingness to institute interventions like clean air & far UVC
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Julia Doubleday
@juliadoubleday.bsky.social
about 7 hours ago
I surely do! Estimated vary study to study, but this review and meta-analysis found ā€œthe proportion of people who became infected with SARS-CoV-2 and remained asymptomatic throughout infection was 44.1%ā€ pmc.ncbi.nlm.nih.gov/arti….
Asymptomatic SARS-CoV-2 Infection by Age: A Global Systematic Review and Meta-analysis

pmc.ncbi.nlm.nih.gov

Asymptomatic SARS-CoV-2 Infection by Age: A Global Systematic Review and Meta-analysis

Asymptomatic SARS-CoV-2 infections have raised concerns for public health policies to manage epidemics. This systematic review and meta-analysis aimed to estimate the age-specific proportion of asympt...

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Tom Kindlon
@tomkindlon.bsky.social
about 7 hours ago
About Friends
Gepubliceerd op 3 december 2024
I have been in a mild, moderate, ā€œon a breakā€  and severe relationship with ME for almost 3 decades. As with any relationship, I have seen the darkest and lightest that it has to offer, as well as the side effects. The lightest side effect is definitely friendship with online people who understand this daily struggle.

(What a relief to discover that others also have to adjust to sensory overload, managing communication with voice messages, listening to audio books at 80% speed and also not tolerating the smell of cleaning products, perfume or aftershave.)

The darkest side effect, even beyond the endless pain and horrible, sometimes terrifying symptoms, has to be the loss of those friends from the days of better health.
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Billy Hanlon
@bhanlon15.bsky.social
about 7 hours ago
11/22/21, Medical News Today: 'Through my eyes: Long neuro-COVID' 'My heart rate would increase further, to 170 bpm, on standing and with minimal exertion, such as getting a drink or using the bathroom.' 'I haven’t watched TV or driven in 10 months.' www.medicalnewstoday.com/….
My experience of living with long neuro-COVID

www.medicalnewstoday.com

My experience of living with long neuro-COVID

Dr. Kelly Ann Fearnley lives with long COVID and persistent neurological and neurocognitive symptoms. In this article, she talks about her experiences.

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The Real McCoy
@rippermd41.bsky.social
about 8 hours ago
Then my husband’s ā€œfriendsā€ would mock him with texts like ā€œwhat, are you all afraid of the sniffles now?ā€ Meanwhile at home he’s watching me deteriorate every year until I’m housebound and 97% bedbound from #MECFS He dropped them.
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Melissa Gira Grant
@melissagiragrant.com
about 8 hours ago
I can elaborate a little (knowing some of these folks might be reading)... it went both ways, with even well-meaning people still expecting me to meet at bars inside and feeling bad about them not getting it, and some people who, after I just mentioned long Covid, ghosted, and it's been years
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The Real McCoy
@rippermd41.bsky.social
about 8 hours ago
Excellent piece. Every time this discourse rolls around they treat those of us that mask like we’re hypochondriacs. No we’re the ghosts of infections past. We plead with you so that you can avoid our fate. In return you mock us. #MECFS #LongCovid
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