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Dakota15 said:
'Another term used in the MDH presentation is “crash.” A crash is a colloquial term for post-exertion malaise (PEM). It happens when people with ME/CFS use up more energy than they have.'
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Is that true? I thought there was more to a "crash" than PEM.
 
Dakota15 said:
'Another term used in the MDH presentation is “crash.” A crash is a colloquial term for post-exertion malaise (PEM). It happens when people with ME/CFS use up more energy than they have.'
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Medical dictionary meaning of the term 'crash':

1. A colloquial term for a sudden change for the worse in a patient's health. 2. A colloquial term for acute drug withdrawal.

This does not describe delayed PEM. I think we need to stay away from the term crash.
 
Common Dreams: 'The Lessons of Covid-19 and Its Long Haul: We Need Community Care'

'An estimated 7.5% of adults in the United States suffer from Long Covid..from brain fog..to bedridden fatigue...I know this because it happened to me.'

'Aches and pains, post-exertional malaise, and a weakened immune system circumscribe my daily activities.'

'To be sure, we still need to push institutions at the local and federal levels to make available personal protective equipment and resources for frontline workers, better access to healthcare, more research on Long Covid and other underfunded chronic conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).'
 
Dakota15 said:
Medscape: 'Long COVID Symptoms Persist up to 3 Yrs Post-Hospitalisation'

'Additionally, post-exertional malaise (PEM) affected nearly one third of patients at 3 years after discharge.'
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up to?
it’s really weird how the headlines have continually assumed the end of the study means the long COVID just magically stops.

At the beginning of the pandemic we were getting headlines about how it can last upto 3 months, later on upto 1 year, now upto 3 years — can’t they just take the hint?
 
SCV News: 'April 17: Public Health Town Hall on Long COVID'

"The Los Angeles County Department of Public Health will host a Town Hall on Long COVID where public health experts & community partners will answer questions on the long-term effects of COVID-19”

This Town Hall is a virtual event to be held at 6:30 p.m. Thursday, April 17 and will be live streamed at:

http://facebook.com/lapublichealth

https://x.com/lapublichealth

https://youtube.com/lapublichealth

Submit questions at:

TinyURL.com/LongCOVID-Townhall


Panelists:

Dr. Annabelle De St. Maurice, LA County Dept. of Public Health
Dr. Nisha Viswanathan, UCLA Health Long COVID Program
Reda Roundtree, Resident with Long COVID
Dr. Tony Kuo, LA County Dept. of Public Health
Dr. Priya Batra, LA County Dept. of Public Health
 
KPBS (San Diego): 'The isolating and endless journey through long COVID'

'Long COVID has left lasting impacts on individuals' health and daily lives, but for many, it's still an invisible struggle — undiagnosed, untreated and often misunderstood.'

(12 min audio)

Excerpts:

"...one woman told me it's been a long, lonely journey and they're suffering in silence."

"A lot of people, you know, have different symptoms. Some have brain fog...some have cardiac issues and they can't tolerate physical activity. I spoke with one doctor who a few minutes, you know, on the playground with his kids, sends them to bed for about 14 hours."

'The closure of the Federal Office for Long COVID research is a big blow. That office was coordinating national efforts, and losing it risks slowing progress, stalling clinical trials and delaying answers that these patients desperately need..so some of the folks that I spoke with, they just feel forgotten by the system. And these cuts reinforce that feeling."

"They're trying to work, care for families or just get out of bed. And many aren't being properly diagnosed. So these stories help put a human face on what can feel like a distance issue and helps these people feel less invisible."

"They hope for research that leads to real answers and a system that doesn't make them fight so hard for care."
 
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News Week: Brain Tumors Reported Among 6 Staff Members at Boston Hospital

A series of brain tumor diagnoses among staff members at a Massachusetts hospital has sparked concern and prompted dual investigations by the hospital's administration and the nurses' union.

Six employees of Mass General Brigham's Newton-Wellesley Hospital have been diagnosed with various non-cancerous brain tumors, according to officials and union representatives. Mass General Brigham told Newsweek that the employees were "not all currently on the unit, with differing years of diagnosis." The hospital added that some are current staff, while others worked there in some capacity in the past.
 
4/14/25, TEDx Talk: "I Am One of the Millions Missing | Maggie Boxey"

"Do you know one of the millions missing? For those with disabling chronic illnesses, it can feel like they are invisible, watching their lives from a remote distance. In this emotional talk, author, educator and advocate Maggie Boxey shares what her life is like living with ME/CFS, and how she has found a community of people for whom "feeling better" might never be an option."

"I first got sick in July of 2020 during the COVID-19 pandemic. At the time I swore it was COVID - my symptoms were neurological, the headaches were excruciating, my skin was on fire with buzzing and severe itching. The fatigue and brain fog were like nothing that I had experienced before. All my labs were normal - my doctors assumed that I would eventually get better as long as I kept pushing and trying harder..."

"...you're probably familiar with Long COVID. It's a chronic disease that occurs after a COVID-19 infection where symptoms are present for three months or more. About half of those with Long COVID meet the diagnostic criteria for ME, so the amount of people with ME in the United States could be more like five to nine million."

"...the hallmark symptom of ME is called PEM or post-exertional malaise. People with ME call this a crash. This means our symptoms worsen after minimal physical or cognitive activity or even with sensory overload.."
 
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Stats News 4/15/25: RFK Jr. plans changes to vaccine injury reporting system

The HHS secretary has long questioned the adequacy of the current system

WASHINGTON — Health secretary Robert F. Kennedy Jr. said Tuesday that he plans to roll out changes to the vaccine injury monitoring system that would automate and increase data collection as well as look for negative impacts of the shots.

Reforming the current Vaccine Adverse Event Reporting System has long been part of Kennedy’s agenda to raise questins about the safety of immunizations that are currently in use. While the general idea of improving the system is uncontroversial, Kennedy has exaggerated the extent to which side effects of vaccinations go unrecorded, according to researchers.
 
Spectrum News 1: 'Leading long COVID researcher fears it could become a national epidemic'

“They go to the doctor, they test and they get told good news, everything tested normal, which is not good news for someone who is feeling as terrible as most people with long COVID feel" - Dr. David Putrino

One of those people was Nicole Lopez-Jantzen, who used to run marathons, and now can barely walk her dog.

“I’m tired right now," she said on a walk with NY1 just across the street from her apartment in Queens. "My energy just goes down, down. And then I have to go lie down.”

"Seventy percent of people with long COVID have something called autonomic dysfunction, meaning that we have a part of our nervous system, this is the part of your nervous system that controls all the things you don’t usually think about that’s under autonomous control," he said.

Someone with long COVID will feel overexerted just from sitting.

"What we saw in people with long COVID is they were burning 20, 30 percent more energy than someone that we would expect for their height, weight, gender and age," he said. "So even though we were asking them to sit very still and not use any energy at all, their bodies were working really, really hard to maintain that."
 
CIDRAP: 'Episode 181: Public Health Policy Is Political' In "Public Health Policy Is Political"

'Chris Dall and Dr. Osterholm discuss the ongoing measles outbreak, the latest round of job cuts in the public health workforce, and new studies on long COVID'

Osterholm: “Other research suggests that muscles of long COVID patients aren't able to extract the proper amount of oxygen from the blood, and that the mitochondria, often referred to as the powerhouse of the cell, may not work at full capacity in long COVID patients, also hindering muscle tissue. All this is why we have so often described long COVID as a complex puzzle, an understatement, with many, many missing pieces. But each study uncovers another piece, helping us get closer to seeing the full picture, and ultimately finding treatments for this condition that have impacted so many lives.”

“We also have more to learn about the cause of circulatory long COVID symptoms, which can include fatigue, shortness of breath, and exercise intolerance. Just as with other long COVID symptoms, researchers believe that the inflammation is a key factor, potentially damaging the nerve fibers in our body that control the squeezing ability of blood vessels, ultimately resulting in reduced blood flow.”

“Finally, I want to say to all our listeners who are struggling with long COVID, we see you, we read all the impactful messages you share with us, and now more than ever, we will continue to advocate for you.”
 
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