☎️ Call Campaign: Long Covid Moonshot 🚀 Deadline Nov 13th for public comment to HHS 🇬🇧 UK Covid Inquiry finds expert advisors had limited influence on dysfunction from No. 10
Meghan McCain: "He should have been worried about me at Chuck E. Cheese for other reasons. Germ reasons."
Contents:
- Events, Actions, & Campaigns
- Pandemic field notes & “Living with the virus”
- In the News (virus & adjacent media, science, news, and op-eds)
- This is NOT Fine section (gaslighting & other outrages)
- He(a)rd Scuttlebutt (the pandemic grapevine)
USA Call & Letter Campaign: Long Covid Moonshot Nov 14, 2023
Please call your Senators and Representatives on November 14 or any other day when you have energy for a 3-5 minute phone conversation. The call guide and script is here, you are welcome to use it or make your own ask.
By Long Covid Moonshot patients group: “The $1.15 billion the US government allocated for Long Covid research is almost entirely spent, there are still no treatments and no future funding budgeted for Long Covid at the moment. Patients have decided to come together to start calling our Senators and Representatives to demand a moonshot for Long Covid and continuous funding for Long Covid research. WHAT WE WANT: A moonshot for Long Covid - a commitment to invest at least $1B per year over the next 10 years into NIH research funding. The original Moonshot idea was suggested by Dr. Michael Peluso, a UCSF researcher, and Lisa McCorkell, co-founder of the Patient Led Research Collaborative, in this article in Nature. Launch party on twitter spaces Nov 14 3pm EST.
Webinar - LONG COVID IS A TRANS ISSUE
WEDNESDAY NOV 15 2023, 5:30-7:00 PM ET
By Long Covid Justice: “Join us for an important conversation about Long COVID and disparities for the trans community.”
USA Public Comment - Information and Guidance for Public Commenting on U.S. Department of Health and Human Services’ (HHS) proposed rule update to Section 504 of the Rehabilitation Act of 1973
Guide by PAN END IT!
My public comment to HHS on: Discrimination on the Basis of Disability in Health and Human Service Programs or Activities A Proposed Rule by the Health and Human Services Department
Comments are due 11/13/2023 at 11:59 pm EST.
I find the lack of masking at healthcare settings is creating a barrier for me to get safe healthcare as someone who is disabled and high risk in multiple ways according to the CDC information on People With Certain Medical Conditions. I already have disabling post-infection conditions and would like to maintain the ability to function that I have for as long as possible and not be forced into getting more and entirely preventable diseases while getting healthcare. Healthcare is all about stopping disease and caring for people who have medical needs. Why else even have healthcare services except to treat and prevent damage to patient's health? I'm confused about why healthcare provider corporations seem to be arranged around assuming patient safety is irrelevant, and that healthy people need no protection from covid or other respiratory diseases when even healthy people are at risk of becoming disabled by covid, including long-term or permanently. Just the fact that someone is seeking healthcare means that they're more likely to be People With Certain Medical Conditions (people with disabilities) after all. Considering that a significant portion of people seeking healthcare are high risk, even perhaps temporarily high risk, says to me that to make healthcare accessible we need to have a default of universal masking in healthcare. We had this in healthcare for a couple of years at my healthcare providers so we know that it is reasonable accommodation. Requiring patients to have to request this puts an undue burden on the disabled patient in a power imbalanced situation that sometimes becomes hostile when the healthcare provider is uneducated, propagandized, or politicized about infectious disease respiratory protection. Nobody should be forced to beg for safety from people often primed for hostility toward patients over being asked to cover their mouth and nose. If it's standard, there's no problem created for the patient. Everyone masks, and it's equal access for everyone. There is no excuse not to protect us from preventable disease, if you believe disabled people have lives of value.
🗞️ In the news
⚠️ Second Infection Hikes Long COVID Risk: Expert Q&A - Tinker Ready - November 06, 2023 Long COVID is not uncommon. We see it in the clinic in large numbers. Whatever clinic you're running — if you're running a cardiology clinic, or a nephrology clinic, or diabetes, or primary care — probably of some of your people have it. You may not know about it. They may not tell you about it. You may not recognize it. Not all long COVID is the same, and that's really what makes it complex and makes it really hard to deal with in the clinic. But that's the reality that we're all dealing with. And it's multisystemic; it's not like it affects the heart only, the brain only or, the autonomic nervous system only. It does not behave in the same way in different individuals — they may have different manifestations, various health trajectories, and different outcomes. It's important for doctors to get up to speed on long COVID as a multisystem illness.
🇬🇧 I feared scientific advisers were being used by the government – the Covid inquiry shows they were - Devi Sridhar - Fri 3 Nov 2023 08.11 EDT What’s now clear is that Whitty and Vallance were observers in a totally dysfunctional system, and often privately expressed their frustrations and opposition to messaging and policies. For instance, they raised the dangers of Sunak’s “eat out to help out” scheme, which Whitty called “eat out to help out the virus”. The idea went ahead despite their disapproval, and was implicated in the second wave of infections. As more of Vallance’s diary entries become public, it’s clear that both advisers’ views were often marginalised, and they ultimately had limited influence on No 10’s decision-making. Yet when appearing in interviews or alongside Johnson in daily press briefings, none of their concerns were publicly articulated. Both reinforced government messaging, and their daily presence next to the prime minister made them seem supportive and aligned with the policies and direction the country was taking. They made the “mad king” seem believable to the public. Too often they were used by a dysfunctional government to appear competent and scientifically literate.
🇺🇸 Critics Say CDC Advisors' Infection Control Guidance Isn't Strong Enough — Draft guidelines from HICPAC criticized after most recent meeting by Sophie Putka, Enterprise & Investigative Writer, MedPage Today November 6, 2023 HICPAC's voting members are largely infection control and epidemiology experts, but critics have said the committee's makeup privileges the perspectives of health employers. Administrators have an interest in keeping costs down, they say, which runs contrary to implementing protections for workers and patients. Five of the eight members listed on the roster work for hospitals or health systems. During the public comment section of the meeting, speakers told stories of family members contracting COVID-19 or other infections from healthcare visits, and facing healthcare providers who refused to wear N95 masks. "Why is it that I have to continuously ask about safety precautions when I need healthcare?" one commenter asked. "I'm continuously hit with the canned answer from healthcare providers saying that oh, they follow the recommendations and guidelines. ... The whole point of healthcare is to stop disease." Eric Berg, MPH, deputy chief of health at Cal/OSHA, said during the public comment session, "We know from extensive studies from NIOSH and many others that only respirators can protect against fine and ultra fine particles that can carry certain airborne infectious pathogens." Worker protections in California prevail over CDC guidance, he added, which may not be true elsewhere.
Disclosure: I am the unnamed person who is quoted in this piece as saying “The whole point of healthcare is to stop disease.” and my full comment can be heard on the CDC youtube post of the HICPAC meeting on Nov 2nd, and the text has been included on a People’s CDC substack post.
This is NOT fine
Healthcare workers enduring horrendous conditions in Gaza
The situation in hospitals in Gaza is dire, as multiple dangerous infectious diseases are spreading due to current conditions being endured, on top of injuries and supply shortages.
Worrying trends are already emerging regarding the rapid spread of infectious diseases in Gaza, owing to intensifying hostilities, intense overcrowding, and disruptions in healthcare, water, and sanitation, the World Health Organization (WHO) said today. Since mid October, 33,551 cases of diarrhea have been reported, more than half in young children, a steep rise compared to the 2,000 monthly cases typically reported in Gaza in the age-group over the past 2 years. Nearly 9,000 cases of scabies and lice have been reported, about 12,600 cases of rash, and nearly 55,000 upper respiratory infections, the group said. Other problems include disruptions in vaccination and disease surveillance and struggles to maintain infection prevention and control practices in healthcare facilities. The WHO repeated calls to ramp up humanitarian aid and for all parties in the conflict to abide by humanitarian law.
A spokesperson for the Palestine Red Crescent Society (known in the U.S. as the Red Cross) stated on Democracy Now on Nov 9th, 2023, that Israeli government’s evacuation order is not possible to follow without killing some patients who need critical care. And Médecins Sans Frontières (Doctors WIthout Borders) is reporting on Nov 11th, 2023 that there are healthcare workers trapped in hospitals under attack.
He(a)rd Scuttlebutt… pandemic grapevine 🍇🌱
The ball pit at Chuck E. Cheese
Meghan McCain caused a stir because she said her husband was worried about a terrorist attack at Chuck E. Cheese. She said "He should have been worried about me at Chuck E. Cheese for other reasons. Germ reasons."
She’s exactly right about that, and it reminded me of this meme posted last year by @Annalisa840917.
15 years ago my doctor at the time (who I think married a pediatrician) had on multiple occasions used “the ballpit at Chuck E. Cheese” as a sort of yardstick to compare relative settings of infectious disease spread risk — the assumption being that the Chuck E. Cheese ball pit was the highest risk setting commonly understood.
“Our mission must be to confront and counter the injustices, racial and economic, in education and health that this pandemic has made undeniable. We need to build fairness into this system. The intersectional injustices this pandemic has spotlighted extend from the crisis in our healthcare system to the planetary crisis of climate change.”
Senator Ed Markey speaking at the Marked By Covid Covid Memorial Day 2023 Virtual Vigil