News about Long Covid including its relationship to ME/CFS 2020 to 2021

It usually takes patients writing about chronic illness research to read something smart about chronic illness research. The use of vague, biased questionnaires on unrelated issues to the illness being studied, a cornerstone of the BPS model, is one of the single worst decisions ever consciously made in the history of medicine. Oddly enough, it turns out that for a questionnaire to be valid, it actually has to be relevant to the issue. Shocker, clearly, to the whole medical profession.


Using condition specific patient reported outcome measures for long covid
https://www.bmj.com/content/376/bmj.o257

Currently long covid services are using PROMs developed for other conditions such respiratory conditions (Medical Research Council Dyspnea Scale), anxiety disorder (Generalised Anxiety Disorder Assessment) and depression (Patient Health Questionnaire) and a range of other symptom-specific PROMs that have not yet been validated for use with long covid.121314 However, this approach has several limitations. Such measures, in our experience, are cognitively burdensome to long covid patients, do not comprehensively capture the spectrum of symptoms, cannot directly engage with the underlying biological mechanisms, and are reported not to be meaningful by patients, families, and clinicians. Using a range of symptom specific measures makes it challenging to repeat the measures frequently to capture day by day fluctuations and are difficult to implement in busy services overburdened with managing such a large caseload of patients. There is the added danger of misleading management, for example individuals scoring highly on anxiety scores may get diverted to psychological services when their anxiety is being driven by underlying dysautonomia (increased heart rate) which needs medical optimisation.​

Of course on that last sentence, feature, not a bug. Which makes it all 10x worse, and turns an amoral choice into a blatantly immoral one.

 

The Tyee Ed Yong Explained the Plague Expertly. Now, 'Magical' Animals

quote:
You’ve spoken to countless people for your work — scientists and public-health experts, doctors and health-care workers, COVID long-haulers. Since you began this coverage two years ago, what are some of the most enduring lessons that have remained with you from these conversations and from your reporting?

I’m really struck by the reporting I’ve done on long-haulers. I think that has really broadened and changed my understanding of what it’s like to deal with chronic diseases, and how neglected a lot of such diseases have been by the medical establishment. I hadn’t ever written about things like dysautonomia or ME [also called chronic fatigue syndrome] before this pandemic happened, and now I don’t think I’ll ever not think about them.

There’s a large group of people who have been repeatedly dismissed, ignored, felt gaslit and who have suffered as a result. I think if we had not done that as a society, we would have been in a much better position when COVID happened. I think we would have had more answers for people who are now suffering through long COVID. That sticks in my mind a lot. And just how hard a lot of folks with long COVID have had it — how much they’ve suffered and how much they’ve experienced those same kinds of dismissal. That’s hard to see and is, again, something that I don’t think I will forget anytime soon.

 

The Nevada Independent: When will I get better from COVID-19?

"Despite all we know about the insidious ways the SARS-Cov-2 virus affects the human body, some long-haulers have been met with disbelief and discrimination by employers, medical providers, and families. This makes little sense, as post-infectious health complications are nothing new — COVID is not the first disease to earn this distinction. Certain viruses and bacteria are masters at rewiring and evading the human immune system; SARS-Cov-2 is one."

"Many with long-haul COVID meet the diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a complex disease commonly triggered by viral and bacterial infections. While persistent infections can play a role, the hallmarks of the condition include immune dysfunction, neurological impairments, and oxidative stress. ME/CFS and long COVID overlap considerably and likely will benefit from many of the same treatments."

"We need swift advances in medicine and policies to help those afflicted by long-term health problems from COVID. Research on long-haul COVID needs to build on the decades of ME/CFS research — we can't afford to reinvent wheels. Physicians need to learn about and address the complexities of diagnosing and treating post-infectious diseases, rather than gaslighting patients by dismissing their symptoms as psychogenic."

 

Amy Proal/PolyBio research center: "Interview with Dr. Akiko Iwasaki "An overview of her research on LongCovid and ME/CFS"

https://www.youtube.com/watch?v=TJwUi4p9JHc

 

Infection Control Today: Getting a Head Start on Treating Long COVID

In depth interview with Jaime Seltzer from MEAction.

"I think in order to overcome that inherent necessity to feel safe, people with long COVID and people with ME/CFS need to join hands and advocacy and fight together. And we are. I think, though, that it’s also a great grief and a great tragedy for people to become chronically ill in this country and recognize that there’s very little help for them, very little support for them. And that people would rather be dismissive up to and including their clinician, sometimes, in order to feel like the world is a little bit more safe and a little bit more controllable. So, to summarize, I think we must fight together for better funding. We also have to fight to include ME/CFS in long COVID studies, because right now the NIH [National Institutes for Health] is saying things like “research on long COVID will trickle down to people with other post-viral complications.” But if you’re in science, you know, that’s not actually possible unless you research both groups at the same time under the same conditions."

 

Which decades are these?

 

Thanks for posting the link.

Does anyone know more about the "intensive autonomic rehabilitation therapy" that was mentioned?

Quote:

 

A quick search of Putrino and "autonomic rehabilitation" found this presentation:

https://www.health.ny.gov/commissio...y_approaches_long_covid_care/docs/putrino.pdf

 

"Congresswoman Ayanna Pressley speaks with COVID-19 Longhauler Advocacy Project, January 28, 2022"

Important conversation with Massachusetts Congresswoman Rep. Ayanna Pressley & Long COVID patient advocates.

Dr. Lucinda Bateman speaks at 1 hour & 3 minutes.

 

Well done for having to go in live without any preparation. Morning shows like this usually have more viewers than nightly news programs, so this reaches a lot of people.

https://twitter.com/user/status/1488353358373031940

 

10 to 30%....It's kinda weird how that 20% persistence to the point of disability keeps surfacing.

It could suggest an immune issue common to about that amount of people.

I don't believe that for a second.

Moreover, if anything, I suspect that roughly 20% on average estimate is way, way off, and likely higher.

 

Science journalist for New York Times & Scientific American:

https://twitter.com/user/status/1488553264362795018

 

New York holding virtual panel discussion on 'long COVID'

"New York State will hold a virtual event Thursday featuring a panel of experts discussing how to identify and treat long-term COVID-19 symptoms, and how the state can implement policies to address 'long COVID.'

Public health specialists, clinicians, social scientists, patient advocates and others will talk about their experience with ‘long COVID’ and how the state can develop policies and programs to address the issues."

 

My bolding.


I received this email from them today.

" Thank you for your participation in the survey, which has been vital to tracking COVID-19 and the impact of vaccines on getting and passing on COVID-19.

When you joined the survey, you agreed that we could link information from you in the survey to health data for one year after your last survey visit. We get health data from the NHS, the UK Health Security Agency (formerly called Public Health England) and the Office for National Statistics (ONS) or the equivalent national public health and statistics bodies in Wales, Northern Ireland and Scotland. These data help us to check your health status, see if you have visited hospital or a GP, or had another test for COVID-19 somewhere else. This is to find out things like how much having COVID-19, or being vaccinated, affects how often people go into hospital or visit their GP. This linkage is being done whilst people are having visits and after they stop having visits in the survey.

COVID-19 has gone on for a lot longer than we could have imagined when we set up the survey, and many more people have been infected, with different variants. Over the coming years, it will be extremely important for people themselves, and for the NHS, to know whether COVID-19 makes people more likely to get other long-term conditions, like diabetes, heart disease or dementia. Because we test people every month in the survey, we have a very good idea of who has had COVID-19 and who has not even if they did not know at the time. This makes the survey one of the best ways to look at how likely people are to get other conditions in the future if they have had COVID-19 in the past. This will also help the NHS plan for the future.

Because of the importance of this information, we would like to link your data from the survey to your NHS and GP records for up to fifteen years after you stop taking part in the study, not just for one year. Because we do not ask questions about other health conditions you may have as part of the survey, we would also like to link your data back to January 2016 (4 calendar years before COVID-19 started) to make sure we take proper account of any conditions that you had before you joined the survey. "

 

I'm a participant in a Norwegian Covid-19 study based on large surveys. They too have started to include questions concerning Long Covid and I tick several of the symptoms for Long Covid, even though I've never tested positive for Covid-19. In these surveys it's possible to add your own text, so I've written that these symptoms are not new and begun many years ago after infection with mononucleosis.

But I see it's used as a way to dismiss Long Covid, that also people who have never been infected with Covid-19 report of the same symptoms.

I hope researchers on long term effects of Covid-19 keep in mind that this is not a new phenomenon, and that there are lots of people who are already many years down their post viral illness journey that might become part of their surveys.

 

No. Just general about fatigue, headache etc.

 

SFGate: "Coronavirus cases are dropping. It's time to talk about long COVID"

Features Dr. Mady Hornig.

Excerpts:

"Some people develop symptoms that look very similar to chronic fatigue syndrome, also known as myalgic encephalomyelitis. That kind of “post-viral syndrome” can develop after all kinds of infection, including after mild or even asymptomatic cases of COVID. People may feel extremely tired, no matter how much they sleep; have extreme difficulty concentrating, also known as “brain fog”; and get exhausted just from walking across the room."

"There are likely connections between the immune response to the virus and all these diverse symptoms, according to Mady Hornig, an associate professor of epidemiology at Columbia University’s Mailman School of Public Health, who specializes in myalgic encephalomyelitis. She developed long COVID herself about four months after being infected. For more than a year, even mild exertion could trigger her heart to race and her blood oxygen to drop.

“Infection-triggered syndromes are certainly not a surprise,” she told SFGATE. “There’s so much that we really need to understand about what is actually wrong.”

To Hornig, the pandemic represents an enormous opportunity — and obligation — to learn as much as we can about this and other post-viral syndromes. “So many people got this at the same time, we’re finally looking at all sorts of nervous system disorders,” she said. “But we have so far to go before we know what to do.”

 

Personally, I think they should eliminate 'fatigue' from their studies. Perhaps ask how long one can stand or walk, leg heaviness, do they have weakness et.

I didn't have fatigue when I first became ill, but may have checked it off if there weren't any other alternative terms or box where I could elaborate.