Long #Covid Support:
Research Involvement Consultancy
"We make it easy to involve people with #LongCovid in your research and help ensure your study is relevant, robust and keeps the patient voice at the centre."
“North Carolina Shelves Controversial Mask Ban Bill Amid Public Outcry”
“North Carolina's House Bill 237, which aimed to criminalize wearing masks in public, has been temporarily shelved due to widespread online protests and petitions.”
I dunno if anyone will not have heard, but the fancy Cue Health NAAT molecular #Covid test, with the handheld gizmo, has been revealed to be a near-fraud. The FDA found that the company implemented non-approved changes to reagent formulations and device firmware post-EUA that will have significantly reduced the test’s accuracy.
In response to the FDA’s letter, the company elected to go out of business.
Blood brain barrier disruption and glutamatergic excitotoxicity in post-acute sequelae of #SARSCOV2 infection cognitive impairment: potential biomarkers & a window into pathogenesis
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"We have undertaken a comprehensive proof-of-concept prospective case–control study to investigate parallel changes in blood brain barrier permeability, neurochemicals, & white matter microstructure changes in #PASC CI [cognitive impairment] patients"
"(Contd) In line with this assumed chronicity, 85% of patients reporting complaints two months after COVID-19 still reported symptoms one year after their symptom onset"
"we applied the advanced imaging technique [Diffusion Microstructure Imaging] to uncover microstructural changes after #COVID19 infection, with the observation of different patterns in a cohort of patients with and without PCC [Post-COVID-condition]"
"This is the first US surge with no hospital data... Remember when CDC said that hospital metrics would be the trigger for prevention protections, like the return of masking?"
🇳🇿"New Zealand is experiencing its highest peak in COVID-19 cases since December 2022, professor Michael Baker says."
"Despite the recommended isolation period now only being 5 days, Baker suggested people still getting a positive Covid-19 test wait to test again on day 6 or 7 before going back into society."
"The biology hasn't changed," Baker said, but there was more pressure for people to go back to work and school."
People will wipe down their entire seats, screens and window on a flight because some influencer told them it's the only safe way to travel, yet they don't wear a mask despite experts begging them to. When will the mind stop being boggled? #Travel#CovidIsNotOver#MaskUp
Top story: Banning masks because they supposedly hide a person's identity is just another excuse.
"[T]here's little evidence that any kind of medical mask does anything to conceal your identity. A report in Nature found that even sunglasses do a better job than a surgical mask or an N95 respirator...The Department of Homeland Security even tested their tools and found they still work 96 percent of the time when the public masks."
A few months ago a friend told me I needed to stop “being a burden” on those around me & find somewhere with round the clock care to live & accommodate my disabilities. Knowing no such place exists for someone like me - I gave them a challenge.
I told them that I had looked for such a place many times - and I’ve come up empty because people like me (relatively young with unstable chronic illnesses) fall through the cracks. We aren’t considered when care homes are being established.
We have homes for the elderly, rehab centres and hospices but almost nothing for a young person who isn’t imminently dying but also has no expectation of improvement. I challenged this friend to find me a place - within a reasonable budget - and said if they did I would move.
Of course they were unable to find anything - and in fact even when they tripled their budget they came up empty. There was one contender that provided a brief glimmer of hope - but as soon as they discovered my heart condition they said no.
The reason? “She’s too unstable and we don’t have adequate monitoring. She should be in hospital or try hospice.” Most chronically ill people know that hospitals are short term solutions & will often discharge you before you’re strong enough to be on your own.
And hospice? You can’t enter hospice unless you are imminently dying. So around & around this friend went… hitting all the same roadblocks I’ve hit time and time again. Finally they asked if I considered private in home nursing?
In home nurses where I am start at around $36/hour. If you need round the clock care that’s just over $6000 a week. Clearly not an option for the vast majority of people.
Finally my friend conceded that I was right and there was no magical place where I could have round the clock care & cease being a “burden” to those around me. They were flustered and apologetic & kept saying “I just assumed you hadn’t really looked”.
Therein lies the problem for so many of us - our friends & family always seem to assume they know better and/or that we have simply failed and not “tried hard enough”. The reality is we often spend all our energy looking for solutions - but those solutions simply don’t exist.
I thanked my friend for apologizing & for their efforts in trying to find a place - but I also asked them to consider how it feels to be called a “burden” just for needing support to survive. To be told you needed to go away & stop “bothering” friends & family?
Of course my friend didn’t have an answer - just uncomfortable silence followed by some muffled apologies. I share this story to implore people to stop assuming disabled people haven’t already tried the things you’re suggesting.
This doesn’t mean it’s wrong to make suggestions. But if we tell you we’ve already tried it and it’s not an option - believe us. It’s exhausting spending your days dealing with chronic illness - we don’t need to be explaining ourselves to people who should have our back.
Lastly - disabled people are NOT a burden. There’s nothing wrong with needing help to survive. Telling someone they should feel bad about receiving that help is an unkind thing to do. Please offer help or keep quiet. Most importantly - believe us when we say we’ve tried.
I follow COVID scientists here on Mastodon. I've seen them post links to studies showing waning effectiveness of COVID vaccines after 6 months.
I received the updated booster last October and want to get boosted again prior to some planned travel in July. (Air travel to the MAGA anti-vax cesspool known as Florida)
I have contacted three pharmacies in my area.
One has no COVID vaccines at all and said they won't receive any until fall.
The other two say they will not vaccinate me because they must follow US Centers for Disease Control and Prevention (CDC) guidelines stating that only people 65 years and older should receive boosters at this time.
They won't vaccinate me even if I am willing to pay out of pocket.
Both say I must get a recommendation from my health care provider before they will even consider it.
Less than 20% of people in my state are up to date on their COVID vaccines. For those of us who want to follow the science and not some arbitrary age limitation, why not let us get vaccinated?
Being disabled & chronically ill is beyond lonely. Far too many people in society can’t comprehend illnesses which are permanent & unrelenting but don’t necessarily kill you. As a result they EXPECT you to get better.
When you don’t - they abandon you.
People understand illnesses like cancer - you get sick & get better or you die. They can support & empathize with that.
When it comes to chronic illness … that support & empathy dries up. The idea that someone could be sick FOREVER & not die is too much for people.
I understand it’s not something anyone wants to think about. The idea of being sick forever with no end in sight is understandably scary. But just because something is scary doesn’t mean it’s not real. It doesn’t mean it’s fake or an exaggeration.
The unwillingness of people to confront their own frailty - to consider the possibility that they could lose their health one day - leads them to isolate those of us who are chronically ill. They disappear us so they don’t have to face it.
It often starts with comments like “I’m sure it can’t be THAT bad” or “you just need to try harder”.
Gaslighting remarks that are disguised as kindess when in reality they tell us you don’t believe us. Then people start asking “are you better YET?”
That one really hurts because the emphasis is always on the “yet”. It’s as though our still being sick is an inconvenience to THEM. No thought is ever given to how awful it makes us feel to have to explain for the millionth time that we aren’t ever getting better.
These exchanges go on for awhile until they succeed in either pushing us away - or they inevitably ghost us. But the result is always the same. Friends and family lost from our lives & us facing our illness alone.
This loneliness drives a lot of people to look for community on social media. It’s an invaluable place to connect because we can find like minded people & engage without ever getting out of bed. We don’t have to shower or try and look “our best”. We just have to show up.
Unfortunately there’s people who seek to tear down the connections you make online - either by invalidating them or by incessant trolling which render it nearly impossible to use the website. This has gotten much worse since Covid.
All of these things lead to an isolated and lonely life - one where there’s a lot of longing. I long for someone who will show up for me & help me without judgement. Without dismissing my concerns or insinuating I’m not really “that sick”. I long for safe & loving connection.
I worry that Covid has only intensified the loneliness for the vast majority of chronically ill people. Those who are desperate to believe Covid is over NEED us disappeared. We are a constant reminder of the fact that they’re risking their health - and they don’t like it.
I understand why they don’t want to face us. No one wants to face a reality of lifelong chronic illness. But turning away won’t save you. We can HELP protect your health. We can help build better safety nets so if you ever DO become sick you won’t struggle the way we do.
Plus you can help us. We’ve already lost so much. Our health. Our independence. Our agency in many healthcare decisions. Our ability to safely access public spaces. Our friends and family.
We need allies we can count on to be there to support us. Who believe us.
My ask of all people tonight is to take a moment and think of the sickest you ever were - whether that be a flu or Covid, food poisoning or surgery recovery - and imagine feeling that way for the rest of your life. Imagine knowing there was no end in sight.
Once you imagine that - consider how hard that reality might be in a world that’s screaming at you to “just stay home” or blaming you incessantly for covid mitigations. In a world that doesn’t even think you deserve safe access to healthcare. In a world embracing euthanasia.
Now reach out to a disabled or chronically ill person in your life. Tell them they’re cared for. Ask if they need any support. If you don’t know any disabled people …
Find an account on here & follow and amplify them. I promise we need that support now more than ever.
People who were repeatedly vaccinated for COVID-19 — initially receiving shots aimed at the original variant, followed by boosters and updated vaccines targeting variants — generated antibodies capable of neutralizing a wide range of SARS-CoV-2 variants and even some distantly related coronaviruses.
🇪🇸 Spain: A new wave of COVID-19 infections is beginning to be noticed in hospitals in Spain.
"According to data from the Acute Respiratory Infection Surveillance System released by the Carlos III Health Institute, hospitalizations due to covid-19 have quadrupled in two weeks, mainly affecting people between 65 and 79 years old."
"In communities like Madrid, infections have skyrocketed in patients aged 60 or over, increasing by 60%."
I remember when it felt like the "new normal" might be that most everyone would at least continue to mask in critical public spaces like hospitals, grocery stores, and pharmacies for the foreseeable future (I know not everywhere ever had this, but in the area I live in, there was a glimmer). It would buy time while we learned more about the virus & buildings could work on improving ventilation & air filtration, etc. It would be inconvenient but entirely doable.
The proposed mask ban in North Carolina will turn people who are trying to protect their health (and the health of others) into criminals.
While the action of the government doesn’t surprise me - the response of the public does. I expected most people to find this type of law appalling - and instead I’m seeing people celebrating what I consider to be eugenics in action.
I wrote about the proposed bill, the public response and the disability community’s right to survive:
I hear that 2020 was difficult and traumatic for a lot of people. But for me, and I suspect for many of us who are still Covid-cautious, this year has been the most difficult year yet.
Not only are few people still wearing masks, but mask bans are now happening. Public areas are more and more dangerous, and mask-wearers are now being viewed as criminals.
Family are less and less tolerant of what they now view as subversive behavior from those of us who don’t want to gather together without mitigations.
As more years pass, waiting on medical care becomes impossible, and the likelihood of needing to take the major risk of visiting medical, dental, eye care and other facilities becomes greater. And now with the added risk of even healthcare providers not masking.
This is the hardest year by far. My patience for those talking about the trauma of 2020 has waned.
News: Biobot is sunsetting its COVID-19 wastewater public data visualization platform.
While Biobot will continue to publish their contextualized weekly respiratory risk reports, this represents another decrease in data transparency, and a step in the wrong direction.
What happens when you mandate masks at a conference now that most people no longer wear them but medically vulnerable people are still at risk because #CovidIsNotOver? In the case of #PyConUS, the conference sells out.
Why a masking policy? “Many of us and our fellow community members can’t attend without health and safety guidelines in place. We want PyCon US to be an event that everyone feels safe attending,” organizers explained.