ME/CFS

cross-posted from: https://swg-empire.de/post/2555919

Offener Brief an Abgeordnete von Union und SPD zur Aufnahme von MEcfs in den Koalitionsvertrag

Ich hoffe dieser offene Brief kann etwas erreichen. ME ist die häufigste Ausprägung von Long Covid. War aber schon vorher Jahrzehnte lang bekannt. Trotzdem wissen noch nicht einmal die meisten Ärzte, dass es existiert oder tun es als Depression oder andere psychische Erkrankung ab.

Einfach nur mehr Bekanntheit würde mir und anderen Betroffenen viel bringen.

Summary of the latest study on oxaloacetate, a food supplement found in nutmeg among others. The supplement is pretty expensive.

I've been taking 1000 mg per day for about a month and haven't noticed any change. I think I will raise that to 2000 mg when my current bottle is empty and then decide if I will keep taking it. Currently not very optimistic.

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

cross-posted from: https://lemmy.blahaj.zone/post/22652063

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.

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

How a promising triathlete was left bedridden by cruel disease

https://archive.ph/23ivb

Everyone knows that the mitochondria is the powerhouse of the cell. And we know that ME significantly affects the mitochondria. So by unofficially renaming it to Mitochondrial Energy (ME) disease, it helps unfamiliar readers to understand the primary mechanism at a glance, without having to research it more. Easier public understanding can lead to better public image and more donors.

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

cross-posted from: https://lemmy.blahaj.zone/post/20425102

https://en.wikipedia.org/wiki/Main_Page

Although I have no idea who looks at the homepage. Still, every little bit helps.

Warning, the following is possibly negative, but I think it’s fully backed by the facts:

I don’t have the exact numbers, but with 1.65 billion invested in Long COVID (most of which has been used up) the US government must have contributed over 50% possibly over 80% of all research funds ever invested into Long COVID.

The NIH was finally starting to be more reasonable with the money they had left. They started taking input from post-viral experts and seriously including patients in the planning process. There was political will, among the governing party to pass some sort of guarantee for the next decade for Long COVID funding. (Likely, the moonshot wouldn’t have passed as is, but a watered down version would have).

Now the US population has elected a complete trifecta (looks like house is near certainly going GOP although results are yet to be confirmed), to a party which has significant portions believing various covid denialist and anti-vaccine conspiracy theories.

Trump has promised RFK near total control over Health agencies. RFK made a campaign promise that “not a single cent of public money will be wasted on infectious disease research”. This likely includes anything with COVID in the name.

RFK is a notorious alternative medicine promoter, who believes medicine has been too “pharmaceuticalised” and “medicalised”, he tweeted saying he will stop the FDA’s “suppressive measures” against “sunshine, exercise, and raw milk” (among other things).

Not only does it look like there will be no further long COVID funding in the next 4 years by the US government, but the whole (mostly) evidence-based scientific-medical establishment will be taken down, leading to an accelerated era of post-truth medicine (not that medicine doesn’t currently have issues, as we are all too familiar with).

Long COVID is a field in it’s infancy. It’s only existed for four years, and had substantial funding for three, a lot of researchers were starting to slowly interest themselves in it, perhaps even specialise in it. Now that the majority of funding is cut, these researchers, instead of consolidating their role as specialised in Long COVID, will instead look for something else with funding opportunities.

In a sense, the same fate that happened to ME risks happening to long COVID, a severe lack of career researchers and institutional recognition, in an education, research, and public health sense, risks turning Long COVID into the same sort of unofficial, neglected, and only-semi-institutionalised alternative-illness status that ME has had for the majority of it’s history.

Unless private donations or other countries massively step up, I really can’t understate how far reaching the negative consequences of this election is for us.

For the first time we had a post-viral illness with a foot in the door, we were nearly there on the way to becoming a recognised and fairly funded illness, and this election has led that door to shut in the United States, the largest health funder on earth.

cross-posted from: https://mander.xyz/post/19804345

cross-posted from: https://mander.xyz/post/18748327