cross-posted from: https://lemmy.blahaj.zone/post/22652538

How a promising triathlete was left bedridden by cruel disease

https://archive.ph/23ivb

https://archive.ph/23ivb

The gravity of the approaching long Covid pandemic was accurately forecast as early as 2021. Recent data from the Centers for Disease Control and Prevention reveals that more than 3 million U.S. adults have long Covid with significant limitations in daily activities, and more than 16 million have had the condition. A Brookings study found that long Covid has kept between 2 and 4 million full-time equivalent workers out of the workforce. The mainstream media has regularly featured disheartening stories of the biomedical establishment and society-at-large turning its back to the plight of sufferers and the widespread disillusionment this has caused.

In December 2020, the U.S. government’s involvement in addressing the pandemic of long Covid officially began when Congress allocated $1.15 billion to the National Institutes of Health for research into the lasting health consequences of Covid-19. For people suffering from long Covid, the move offered hope.

Just over four years later, on Feb. 19, President Trump disbanded the Health and Human Services Secretary’s Advisory Committee on Long COVID, as part of an executive order titled “Commencing the Reduction of the Federal Bureaucracy.” After the Biden administration’s tepid involvement and fitful progress in long Covid policy and practice, this decision may signal the end of meaningful federal involvement in mitigating the plight of millions of long Covid sufferers.

Three years ago, the UK entered what was supposed to be a new era - one where we had learned from the pandemic, adapted, and built a future where health and safety coexisted with normal life. Instead, 'Learning to Live with Covid' became a euphemism for abandoning any real learning at all.

Despite the suggestion of change, little has been done to protect people in workplaces, schools, hospitals, or public spaces. Instead of solutions grounded in science, we were given advice about flimsy homemade 'face coverings' and difficult to adhere to 'social distancing' guidance while the fundamental issue - airborne transmission - was ignored. And for those who were (and remain) Clinically Vulnerable, this failure to 'learn' has developed into a glaring equality issue, creating systemic disadvantages in work, education, healthcare, and often basic participation in society.

cross-posted from: https://lemmy.blahaj.zone/post/22577442

A study involving over 3,000 participants – both patients and clinicians – found that these misdiagnoses (sometimes termed “in your head” by patients) were often associated with long term impacts on patients’ physical health and wellbeing and damaged trust in healthcare services.

More than 80% said it had damaged their self-worth and 72% of patients reported that the misdiagnosis still upset them, often even decades later. Misdiagnosed patients also reported lower levels of satisfaction with every aspect of medical care and were more likely to distrust doctors, downplay their symptoms, and avoid healthcare services. As one patient reported, it “has damaged my trust and courage in telling doctors very much. I even stopped taking my immunosuppressive medicine because of those words”.

Following these types of misdiagnoses, patients often then blamed themselves for their condition, as one individual described: “I don’t deserve help because this is a disease I’ve brought on myself. You go back to those initial diagnosis, you’ve always got their voices in your head, saying you’re doing this to yourself. You just can’t ever shake that. I’ve tried so hard.”

One patient described the traumatising response their doctor’s judgement had on them: “When a rheumatologist dismissed me I was already suicidal, this just threw me over the edge. Thankfully I am terrible at killing myself, it’s so much more challenging than you think. But the dreadful dismissiveness of doctors when you have a bizarre collection of symptoms is traumatizing and you start to believe them, that it’s all in your head.”

cross-posted from: https://lemmy.blahaj.zone/post/22601408

Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic never happened.

Article “Highlights”

The unwillingness to discuss chronic illness in these conversations is especially concerning when combined with the scepticism faced by long Covid patients, who have to advocate for themselves so that medical professionals, employers and loved ones understand the gravity of their illness. Many report beingdisbelieved; shockingly, the then prime minister Boris Johnson scrawled “bollocks… this is Gulf War Syndrome” next to an October 2020 memo discussing long Covid and its symptoms. Anyone posting about their experience online is likely to be accused of lying, or being lazy, or in the pocket of big pharma. “I certainly think being disbelieved is one of the biggest traumas for Covid patients,” says Sinclair. (This distrust will be familiar to patients with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, who have had their symptoms ignored or dismissed for decades. There is definitely overlap between long Covid and ME/CFS, says Sinclair, but they need to be differentiated.)

All of this conspires to make long Covid patients feel invisible, voiceless and forgotten. On top of the chronic pain and unpredictable recovery they face, the effect can be devastating to individuals’ mental health. Worrying numbers of long Covid patients report depression, anxiety and insomnia; in a 2022 survey, 45% of the nearly 200 patients who responded said they had contemplated suicide. “It’s a really awful illness,” says Heightman. “It’s not uncommon for us to have an appointment with someone, and them to share that they feel suicidal. It’s a particularly difficult illness to cope with, especially in people who were previously well, and the shock of losing their health and the uncertainty about the future is intolerable.”

Even though we are seeing fewer headlines about long Covid, previously healthy people are still contracting it, with each successive infection increasing the risk. “We sometimes will see someone who’s had Covid one, two or three times without problems, and then on the fourth time, suddenly they’ve got long Covid, and that makes them ill for a long time,” says Heightman. More disturbing still are the risks associated withchronic inflammation for long Covid patients, even if they have outwardly recovered. “It’s likely to age you,” says Sinclair, “so it’s going toshorten your telomeres, and therefore increase your risk of early death. It’s also going to increase your risk of any inflammatory condition: cancer is a high risk; we may get heart disease, diabetes, dementia. There’s a huge knock-on in every body system from long Covid.”

cross-posted from: https://lemmy.blahaj.zone/post/22606663

If we can’t learn from errors, families relive tragedy for nothing

“The inquest into my daughter’s death showed me that the system is almost entirely broken

…

“What is the point of investigating avoidable deaths — of making bereaved families relive their trauma, of spending millions of public pounds — unless we are prepared to learn how to avoid similar fatal errors?

Archive Link

“The inquest into my daughter’s death showed me that the system is almost entirely broken

…

“What is the point of investigating avoidable deaths — of making bereaved families relive their trauma, of spending millions of public pounds — unless we are prepared to learn how to avoid similar fatal errors?

Archive Link

What is the point of investigating avoidable deaths — of making bereaved families relive their trauma, of spending millions of public pounds — unless we are prepared to learn how to avoid similar fatal errors?

Archive Link

I’m new to android. (Default android 13, not looking to install custom ROMs because I need this to be very functional and dont have time to deal with bugs).

Anyways, I’ve installed F-Droid, Helix Keyboard and my go to VPN app.

What next? What browser, third party YT player, torrent client, jellyfin client (I’m deaf so need one with opensubtitle integration), email clients, rss aggregator, note taking apps etc. should I install? I’m paralysed by choice.

Is there an equivalent to the ios shortcuts app?

Anyways, I’ll be happy to try out any suggestions. Cheers.

Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic never happened.