Thread by @TheCrisses

at 10AM EDT the House select subcommittee will be hearing about #LongCOVID here's a direct YouTube link for the hearing. 1 hour 45 mins from now.



#COVID #DisabilityPrideMonth

Info gotten via

https://twitter.com/ahandvanish/status/1547696612503302144?s=20&t=qRnaKI5ziVk2EDfWqELmeQ

https://twitter.com/TheCrisses/status/1549400357083779074?s=20&t=Jw-tNK1QiJYFaigpbfZ1uQ

Mentioned a modality that seems to be working anyone catch that? They will likely mention it again.

Mr. Clyburn was the other speaker. :) He was back. He's chairing the meeting.

Of course, only people with long COVID are masking *sigh*. But the testimony speakers are "socially distanced". The chair & reps are not.

Dr. Verduzco-Gutierrez speaking about symptoms, outcomes, job loss, etc. in front line workers, athletes, etc. Neurological complications. Overlap symptoms with brain disease. PTSD/sui ideation. Dementia-like symptoms. Fatigue, dysautonomia, etc.

Resource issues, still no way to get a positive dx/test for long COVID, underfunded, not talked about enough, need more studies of ME, CFS & other post-viral syndromes.

Call for Congress to act to address hurdles (in funding/studies/cures)

Katie Bach (via video). Impact around 4M Americans not working due to long COVID. About 8.1% working Americans (16.4M people) have long COVID per survey data. Some working with it (some mild, accommodations, or need) — and long COVID can affect work.

2.4% of the employed population out of work due to long covid — and expected to increase. Vaccines reduce LC by about 15% (not enough) and reinfections = more long COVID. Economic impacts…lower productivity, healthcare costs, loss of caretakers. est $230B/yr.

If LC increases 10% per year would be about $500B per year.

Interventions: treatment/prevention, research, universal paid sick leave — go to work sick, spread COVID = more infections/long covid. Better disability benefits & expedite approval for SSDI &

waive the Medicaid waiting period.

Disabled workers has increased — shift to remote work helps.

Need to assess/track long COVID better. Include in population surveys.

Hannah Davis - COVID in 2020, still has long COVID symptoms. Worked in AI, can't return to work, considered mild but can't return to work. Describes medical findings, potential causes, etc.

Est 7.5% adults have had longCOVID at least 3 months. Women more at risk, though every demographic affected. People without accommodations or no assistance at home at more risk (no rest).

Many long COVID comes from mild infections after a delay of a couple months after first/reinfection. 9% triple vaxxed got long covid after BA.2.

Overlaps with ME/CFS. Both potentially post-viral conditions, med schools lack teaching on it, low funding, not enough research/outdated research.

Tests often required for entry to treatment facilities etc.

but may not have detectable antibodies or a positive test (due to mild infection).

Long COVID needs to be consider in every COVID response.

Need: public info campaign; prevention measures; more rest/accommodations; legal assistance; financial assistance; fund post-viral experts & clinical trials & med & treatment trials; expand clinical care.

Ms. Cynthia Adinig - has Long COVID - personal account. Was a SuperMom, now can't do what she used to do. Describes symptoms, impacts, young son has long COVID as well. Personal heartrending account. 😭

Racial disparities in care, stigma, seen as substance user & tested without knowledge/permission, etc. not given proper care due to bias/racism in care.

Also has to monitor son's vitals daily and has little hope of him getting proper care for his own long COVID. Care for herself + her son, struggles.

Meta about her mentions of racism & speaking truth to power. "I criticize America because I love her." — MLK.

Asking that congress pass Care for Long COVID act etc. — and asking for a disparity index system for medical centers, to defend families impacted by the pandemic.

Now Q&A.

Clyburn: re suffering & medical pros not taking symptoms seriously, being disbelieved, share more please?

Adinig: traumatic. Went to medical facility as a safe space, week after week now allergic to food/water, starved for weeks, ended up in a wheelchair, begged for help from several hospitals that didn't listen. Terrified she would die. & has to go back to them for care.

Clyburn: enter into record from Sen Kaine statement. Quotes Kaine statement; Kaine suffers from long COVID. About not being believed by the medical community. Misdx. Mischaracterized as MH issues. Etc.

Asks Hanna Davis what can do to educate medical pros

Davis: lists things to tell medical workers about post-viral syndromes like MS etc. HPV->cancer. Etc. SARS1 survivors -> ME/CFS symptoms, etc. Need a large-scale ed of medical providers.

Mr. Green: group of clinicians external counter-pulsation seems to be working for pulminary symptoms of long COVID. Government response has restricted clinical decisions. Can't let gov't dictate to physicians re clinical judgement (cites California) let doctors be doctors.

submitted article from journal on longitudinal study about long term issues of long COVID. Robust clinical study…long-range biomarkers didn't find evidence to support some ideas about reasons - no clear pathogenesis found (yet) from prior infection. Cause still unknown.

Not to say it's not real, but that the CAUSE is still not understood/known.

Asks Verduzco-Gutierrez for criteria used for dx. Says she listens to clients, history of likely infection & ongoing symptoms. 200 types of ongoing symptoms & tries to address symptoms.

Mr. Green: no known specific dx. Are there other encephelophic conditions we may be missing if we say this might be long COVID?

She says yes, there's more research needed to see if there's anything else we may be missing.

Green: How many pts not hospitalized but dev long covid?

Answer: Initially 25% had been hospitalized, now 5% or so had been hospitalized.

Ms. Waters: Certainly long COVID exists, and people impacted by it, and many unable to work continuously, they will be disabled — we don't want to make the same mistakes missing these vulnerable people, this is an important issue, must move agressively

to make sure esp vulnerable populations aren't missed and get treated. Other symptoms that were not listed are there some factors that you need to see to be able to dx - confirm that there's more research needed etc. Ppl will get turned down, suspected of lying. Big problem.

Especially with new variants that complicates issues. Appreciates testimony of what you have experienced (to Adinig). We cannot 2nd/3rd/4th guess what clients tell us, do testing, some complications can be seen/detected, but not all of them.

She doesn't have questions — there are so many questions. "So alerting us, saying 'be on this' is enough for me." thanks the witnesses/testimony, and that they're valuable.

Rep Carolyn Maloney: now aware of this issue, no test to dx, some physicians dismissive. Asks what can be done.

Verduzco-Gutierrez: describes some examples of tests, referrals to other specialists, specialized equipment needed, multi-disciplinary care

because it's a multi-system disorder. cardio, etc. needed too. Difficult, expensive, it's a barrier to many.

Q Is there a test to dx?
A No there is not.
Q What's the status of getting one?
A In progress across the world. Not fast enough.

Q Some required to have a test to prove they've had it -- some may have it & hard time to get care. Davis: how can people get support?

Davis: only 3% of cases from 1st wave had documentation etc. so majority experience is no PCR documentation.

Increased with home testing too — many don't have proof of having had COVID at all.

Long covid clinics require PCR tests. Antibody tests also bias across gender issues etc. and 1/4 never made antibodies or "woman" — or lost the antibodies (80% women). etc.

Majority of people who can't get into the clinics are socioeconomically disadvantaged & women.

Rep. Velazquez: Women & POC overrep in low wage jobs challenging for people with long term health challenges and lack paid medical leave. How does this impact LC?

Bach: the burden on low income workers have also disproportionate exposure — front line, necessary workplaces, lack of remote options, etc. and financial need.
a) people go to work sick & more likely to infect others.
(can't afford to stay home)

b) when sick, push through, no choice — worst thing you can do with COVID 19 is fail to rest. Physically demanding jobs…

Q:How do symptoms of LC make it more difficult to work full time.

Davis: cognitive functioning symptoms don't improve.

communication, audio processing, impacts watching kids, driving, etc. Prevents participation in the world, feels like mild dementia. Not like ADHD, it's really disruptive to every avenue of life.

Q: can Mrs. Bach explain need for employers to recognize LC as a disability.

Bach: workers need to be aware they're ADA covered, and employers need to be made aware it's covered & see examples of accommodations in various industries, networking employers & explain types of accommodations that are working.

Q: how can congress help

A:Need more investment in research. Tests. No medicare wait period. Invest it employers understanding they're LEGALLY OBLIGATED to make accommodations, and it will benefit them.

Rep. Jamie Raskin: Bach q: numbers affected/impacted re: employment and likelihood of increasing. What is your est of whether LC is going to have an impact on the US economy?

Bach: it does. Decrease in labor production rate. 2.3% US out of work due to LC.

Also working sick - impact on productivity. There's no way this doesn't impact the economy.

Q: What kinds of data collection are needed to get a handle on it?

Bach: household pulse survey & current population survey -

HPS has added LC questions. Needs duration & impact on work.

CPS - statistically robust/longitudinal needs to track over long time & needs qs on prevalence & impact on work.

Raskin: conflict between strict public health public protocols for prevention…

vs those who wanted to let it wash over the population. This suggests the latter is a dangerous strategy for LC as well. Not just those more vulnerable in the first place.

Q Is that right.

A That's exactly correct.

Q So don't let it run wild?

Bach: that position can only be held if you don't think our economic security is important.

That's a great quote lol

Rep. Krishnamoorthi: How much money we're trying to devote is going to go to LC in children? (has child impacted)

Davis: LC in children understudied in part because disparity in antibody/PCR study applies even more to children. lower viral load to adults, etc.

so LC children end up in the control groups. (Because they can't separate out children who aren't exposed or do not have LC.) So the studies are tainted.

(missed the next question but reinforces the above)

So prevalence in children is vastly underestimated.

Long COVID children may not be detected because they're in both the test & control groups.

Davis: re: ME/CFS can be mild through severe. Childhood onset is a risk for severe ME/CFS — so that's a big risk of kids getting repeated infections. May be bedbound. Worried.

Q: what are some more effective treatments for children that people may not know about?

A: Not sure many but a good primer on ME/CFS in children, Peter Roe(Sp?) should uplift & fund — there's less than 10 experts on childhood post-viral illness in the US, they need $.

Q: son had problems months later, with a roar — hunting for Drs everywhere to help son, personal attestation: Huge problem. Wants to work with helping.

A: asthma/allergies issue due to mast cell involvement, look for experts.

Rep Ayanna Pressley: Hears from neighbors, athletes, etc. lauds testimony, need bold policy and significant investments in healing & justice. Disability justice, gender/racial/healthcare justice.

Working with advocates etc. to introduce ACT for multidisciplinary clinics.

Dr. V-G: (on clinics) ME/CFS etc. patients able to be seen/heard and get dx appropriate for conditions & individualized treatments, some need rest/pacing, etc. some need workups with cardiac/tilt table, some need rheum/immune etc.

need teams & rehab specialists etc. And counterpulsation treatments.

Q: funding these clinics?

Davis: LC clinics necessary to get care in 1 place, need clinics not prioritized on ins coverage, need knowledgeable drs, etc. hope can make that happen.

Q How would your experience have been different in such clinic?

A if had care from the start wouldn't be here telling this suffering/trauma story, would be recovered & doing what does best working at NPOs & giving back to community.

Green: Thanks witnesses. Closing stmt: Just because there's no test or clinical criteria doesn't mean there's no legit disease/illness here. It also doesn't mean something else isn't going on. We have to get to the bottom of it (is an MD).

Need an informed decision, research not showing causation.

You shouldn't be dismissed, no clinician should treat you that way.

State bureaucrats shouldn't tell clinicians how to be clinicians. "Can't do X" is wrong. Let them make the decisions they've been trained to make.

Clyburn: Letter from LC advocacy project entered into evidence.

Thanks, closing remarks.

Vaccination crucial to prevent severe illness…it may also prevent symptoms of LC. Urge all not up to date to get vaccinated & boosted ASAP.

Will fwd Qs to witnesses for 5 days.

Adjourned.

@threadreaderapp unroll

Important note: Sen Kaine may not have been the one disbelieved, his letter included info from other sufferers of Long COVID, so the summary by Clyburn may have glossed over whether it was Kaine who experienced that.

They were going so fast at this point our notes were garbled — Rep. Krishnamoorthi was saying that his son had some problems after COVID, but then several months later it suddenly got much worse. Already had asthma issues. Davis recommended mast cell experts.

The Q was Pressley and the q was to Adinig regarding her testimony about how doctors treated her in the hospital, and would she have gotten better care at a multidisciplinary clinic specializing in post-viral syndromes.