Folks who recovered from #LongCOVID can & will catch SARS-CoV-2 and contract #LongCOVID a second time. And many won't recover this time.
Many #pwME had multiple hits (usually but not necessarily w/o full recovery) before a 'point of no return'.
2) A Deadlier Variant
People assumed Omicron was 'mild' because they observed fewer deaths. As it turns out, it was killing vaccinated ppl less often. It's not less deadly than other variants. There is no reason we will move towards less deadly variants. scmp.com/news/world/uni…
The idea that viruses "naturally" always mutate to become less deadly is a very old idea but is not likely to be the case.
If we continue to allow SARS-CoV-2 to spread freely, a much more deadly variant could be the result.
Repeated infection leads to damage in most everyone, attacking each individual's weakest body system.
1/4 adults had a disability pre-pandemic, so this is VERY much in reach.
If #3 happens, we'll see the collapse of industries. Food shortages, supply chain issues of today will worsen.
This is our current path because: 1) we can't admit our mistakes 2) we've chosen to prioritize short-term financial gains over long-term stability
4) Geopolitical power shifts
Many countries are doing much better with COVID than we are, one in particular that many would consider our rival in commerce. Fewer dead and disabled means more innovation, more workers, a better economy for them.
5) A Ticking Time Bomb
Just like EBV triggers MS -- a long-term illness that often goes undiagnosed at first -- and HIV triggers AIDS, which may not manifest for years -- it could be that SARS-CoV-2 also has some unpleasant surprises in store 5,10,15 years down the line.
Radical change from our governmental agencies is required.
Sticking our heads in the sand isn't a strategy.
Turn the ship before we hit any of THESE icebergs.
(That I don't see people talking about, yet)
I always forget how deep the rabbit hole of misinformation goes. For anyone thinking, "but re: points #1 and #3, you can't just keep getting COVID forever! Herd immunity, natural immunity!" 🙂🌈
I wonder how many realize we have not each touched on the worst-case scenario w/SARS-CoV-2. We're so busy trying to agree on what's happening right now.
You can't predict the future while you're still negotiating the present.
Look, clear-cut answers aren't easy. But saying, "getting COVID is good b/c it gets rid of COVID anxiety!"; or that COVID is over; or that COVID is like a cold; or that the loss of over a million American lives is nothing... these are deliberately misleading statements.
There's also a kind of ethical undercutting. We are supposed to laugh off a million American lives. Doing so is presented as worldly and grown-up.
There are many possible reasons for this (including a return to semi-normal immune function!) but it is a pattern seen in many with #LongCOVID. And, looking back, in those with #MECFS. (2/3)
(Not claiming Serpina feels this way, but using their story as an example only!) (3/3)
So 2020-22 has opened a lot of doors for folks in the ME community. Overall, this is great!
AND it's opened the door to charlatans, tokenistic participation, patient-blaming & ableism, cutesy-app designers & folks clueless about chronic complex disease presented as experts. 🧵
People with #LongCOVID who are new to the space may be unaware how hard #pwME have worked to eradicate people of bad faith from our research, clinical, and advocacy spaces. We've developed a reputation for it: #pwME don't take yr sh!t.
We've developed that tough attitude after being exploited. A great deal. And lied about. A great deal. And promised. A great deal. And harmed. A great deal.
That summer, I went to the Johns Hopkins Summer Epidemiology Seminar; had a great prof I still talk to now & again.
Put the survey together (with the help of Paige) and we got 1800+ responses to questions around patient research priorities in ME/CFS. (2/)
I was in a flurry... I remember I had clips from pertinent articles splayed out all over my living room carpet and there was a SYSTEM. Vicky Whittemore kindly gave me an extension when I asked. Then Ben HsuBorger saw the behemoth I'd produced and said, "JAIME. JAIME NO." (3/)
Neuro diseases like ME/CFS may involve hyperexcitability. Hyperexcitability of the neural network can occur after brain injury or degeneration & is a key feature in epilepsy, neuropathic pain, & even tinnitus. bioelecmed.biomedcentral.com/articles/10.11…
It is well-known that dropping carbohydrates helps reduce the number of seizures in treatment-resistant epilepsy, for example. This is not a theoretical construct, but one for which there is an official and extensively tested diet. hopkinsmedicine.org/neurology_neur…
The theoretical framework re: why this works is the PUFAS (polyunsaturated fatty acids) modulate the function of a range of ion channels, rendering them less excitable. pubmed.ncbi.nlm.nih.gov/23049748/