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

rvallee · Mar 26, 2021

https://twitter.com/user/status/1375349569928695822

Someone on the team responded saying they are taking account of that. Then again BPS researchers keep saying they take harm in consideration yet never do. But at least the standard playbook seems to be noticed. Our years of screaming into the void will not have been in vain.

rvallee · Mar 26, 2021

Neurologic Symptoms Frequent in COVID Long-Haulers

Cognitive dysfunction tops the list of neurologic complaints in long-haul COVID-19 patients whose illness wasn't severe enough for them to be hospitalized, but it isn't the only problem, new research shows.

Researchers who tracked 100 COVID-19 long-haul, nonhospitalized patients from May to November found 85% reported four or more neurologic symptoms.

https://www.medscape.com/viewarticle/947915

The study mentioned is this one: https://www.s4me.info/threads/persi...id‐19-“long-haulers”-2021-graham-et-al.19771/.

(Registration is required to read, but it's free.)

rvallee · Mar 26, 2021

Notice of Special Interest (NOSI): Stimulate Research on the Diagnosis, Treatment, and Mechanistic Understanding of Postural Orthostatic Tachycardia Syndrome (POTS)

https://grants.nih.gov/grants/guide/notice-files/NOT-HL-21-008.html

POTS can be a debilitating condition that affects routine activities such as working or attending school. POTS primarily affects women of child-bearing age, with most studies reporting 80-90% female predominance. The peak incidence is at age 14 years, but half of all individuals with POTS develop it in adulthood. While there are no precise data on the prevalence of POTS, it is estimated to affect 0.2-1% of the U.S. population.

There is thus a compelling need to stimulate research to understand the causes of POTS in order to inform the development of treatments. Improving the diagnosis of POTS through the development of biomarkers or improved diagnostic tools represents another major need. Translational studies and mechanistic clinical trials to guide the development of better treatments are also important goals. This NOSI signals interest in this important area with the goal of stimulating research applications to address these critical needs.

Suggested research examples include, but are not limited to:

Studies to understand causes and mechanisms of POTS, e.g. neuropathology, cardiovascular structure and function, immunology, neurocognitive function

Diagnostic, prognostic, and monitoring biomarker studies

Fluid biomarkers – e.g., blood tests to diagnose POTS or monitor the effect of a therapy

Imaging biomarkers – e.g., functional MRI of the brain, PET and SPECT studies of cardiac sympathetic neuronal function

Biomarker studies of relevance to NINDS are encouraged to review the NINDS Biomarker Program

Longitudinal natural history of POTS

Genetic and epigenetic studies to understand clustering in families, female predominance, and race/ethnic predilections to POTS

Loosely related to Long Covid but I strongly doubt this would have happened otherwise. Scientific contact at NINDS is Vicky Whittemore. I think that's good?

rvallee · Mar 26, 2021

How COVID-19 Affects the Brain

https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2778090

Obviously not just related to long-term symptoms but many similar themes and possible explanations for the symptoms themselves, if not their chronicity.

https://twitter.com/user/status/1375540982129819652

Kalliope · Mar 26, 2021

Medscape: COVID-19 'Long-Haul' Symptoms Overlap With ME/CFS by Miriam Tucker

- People experiencing long-term symptoms following acute COVID-19 infection are increasingly meeting criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a phenomenon that highlights the need for unified research and clinical approaches, speakers said at a press briefing Thursday held by the advocacy group MEAction.

Dolphin · Mar 27, 2021

This wiki looks like it might be useful though I haven't read it to see whether it takes a particular angle.

covid long haulers
https://www.wikiy.org/en/Covid_long_haulers-6286462884
Click to expand...

Dolphin · Jan 6, 2023

Preprint
https://osf.io/tfbnd/

Title: Listening to Long COVID: Epistemic Injustice and COVID-19 morbidity

Vivian V. Altiery De Jesús (MBE)1, Nisreen Alwan (PhD)2 3 4, Felicity Callard(PhD)5, Zackary Berger ( M.D.)6,7

1. University of Puerto Rico School of Medicine
2. School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton, Southampton, UK
3. NIHR Southampton Biomedical Research Centre, University of Southampton and University Hospital Southampton NHS Foundation Trust, Southampton, UK
4. NIHR Applied Research Collaboration (ARC) Wssex, UK 5. University of Glasgow
6. Johns Hopkins Berman Institute of Bioethics
7. Johns Hopkins School of Medicine

Corresponding Author
Zackary Berger
Email: zberger1@jhmi.edu
Phone: 410-955-5000
Word Count
2,094 (Article); 178 (Abstract)

Keywords: Long COVID, COVID-19, Epistemic Injustice, Testimonial Injustice, Social disability model

Abstract

In Long Covid, symptoms do not resolve within several weeks after acute infection with SARS-CoV-2. Patients with COVID-19 and long COVID face stigma and discrimination. One important type of discrimination is epistemic injustice which includes testimonial and hermeneutical injustices. Testimonial injustices occur when healthcare professional disregard or discount patients’ symptoms. This worsens healthcare outcomes and exacerbates challenges to adequate healthcare access at the individual level. Furthermore, testimonial injustices may lead to hermeneutical injustices – systemic underrepresentation of the experiences of the marginalized and minoritized. Healthcare professionals play an essential role in mitigating injustices and have a duty to reduce harms done to patients with long COVID. It is crucial that the clinician avoid multiplying associated harms by not engaging in epistemic injustices.

We suggest the disability model as an approach to improve clinicians’ response to long covid. Epistemic injustice leads to systemic inequities that affect those with chronic disease in general, particularly in populations suffering from structural inequities. The COVID-19 pandemic provides an opportunity for solidarity with those suffering from other chronic diseases that have been marginalized and stigmatized.
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Solidarity with Those with Chronic Diseases

Given the huge numbers of patients likely to be experiencing persistent COVID-19 symptoms, increasing awareness of long COVID is essential. It is also important to recognize that patient communities with chronic illness – such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – are neglected and also experience epistemic injustice 33. Similar to Long COVID, ME/CSF has no specific laboratory test or cure; thus, healthcare providers must rely in the evaluation of symptoms and medical history. In other words, ME/CSF patients are at a similar risk of epistemic injustice, and associated deleterious healthcare outcomes 33.

However, we suggest that Long COVID is distinct in several aspects compared to other chronic conditions. First, Long COVID is a novel disease with a known pathogen. In this setting, survivors reporting symptoms beyond 4 weeks are doing so in an atmosphere of pre-existing uncertainty regarding the disease as a whole. Second is stigma and its intersectionality: while chronic pain, ME/CFS and other conditions (e.g. chronic Lyme) are certainly associated with significant stigma, discrimination, and marginalization, an infectious disease in the context of a current pandemic gives rise to a particularly virulent type of stigma; which can potentially be embodied based on social identities (e.g. disease-related stigma and race-related stigma). Third, COVID-19 is a threat to the survival and health of a population around the world, and long COVID is associated with that threat, unlike the other above mentioned chronic diseases. Lastly, COVID-19 is affecting more people in a much shorter span of time.

Despite certain differences from established chronic conditions, Long COVID can assist in understanding the struggles and mitigating the injustices faced by similar populations. It provides an opportunity for solidarity in facing stigma, marginalization, and epistemic injustice by researching and studying the struggles faced by the population (e.g. health discrimination) and responses (e.g. policies). As well as rectifying systemic inequities affecting all those with chronic diseases and particularly populations suffering from structural inequities.
Click to expand...

Link to forum thread:
Listening to Long Covid: Epistemic injustice and Covid-19 morbidity, 2021, Jesus, Alwan, et al

rvallee · Mar 27, 2021

Hmmm, those are not real differences. Always problematic when comparing to something one does not understand. Especially mentioning Lyme, where we do know the causative pathogen. Same with mono. And others. Ugh.

Deeply ironic that they think the stigma is higher with Long Covid. Boy do they not know what it's like to experience the same thing without any context, entirely alone for years. It's not a competition, but facts are facts.

rvallee · Mar 27, 2021

I've seen a few TV reports and interviews on this US study, one of them:

https://twitter.com/user/status/1374796755028606980

Has a short interview with Francis Collins at the end. Was last week but missed it. He mentioned the similarity with "CFS", but I guess that's expected given this is how it's known in the US.

rvallee · Mar 27, 2021

I'm seeing a lot of recent coverage focused on brain fog, a stream of articles and news reports focusing on it because of recent studies of long haulers. Understandably it is a huge concern to the patients experiencing it but it's amazing seeing such a devastating problem, one entirely ignored by medicine, finally take such prominence.

Still doesn't even have a name. It's not even something medicine recognizes, what with decades of "not interested, I can understand you fine and you can clearly identify the giraffe on the test". And now that it's happening on a massive scale that change from total dismissal is... weird. But welcome. Turns out people like to think. And remember stuff. And have conversations with other people. And all the rest. Almost like we're intelligent beings, or something. Some kind of thinking apes, one might say.

Hard to say whether it will unblock things, but obviously doctors, whose work requires a sharp mind, are kind of worried about it. I don't remember any mention whatsoever of brain fog before this year in the news or anything medical. What a change.

Kalliope · Mar 27, 2021

Opinion piece for CNN: Doctor: My long-Covid patients' stories of recovery sound familiar to me by Susannah Hills
(beware, there's a picture of Paul Garner there, but he's not quoted)

Quote:
Many suffering with long-Covid symptoms will also remain silent. We have learned about the power of stigma to invoke silence from other invisible, chronic syndromes like myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), which health care experts, including Dr. Anthony Fauci, believe is similar to long-Covid. Fatigue is one of the most common symptoms reported by Covid long-haulers, affecting as many as 85% of long-COVID patients in a recent study out of Northwestern Medicine. And nearly 40% of ME/CFS patients have reported in previous studies the need to be secretive about their symptoms.

Stigma from health care providers can be especially damaging. Studies show as many as 77% of ME/CFS patients are labeled with psychological diagnoses by their physicians. Patients with chronic illness who experience or anticipate stigma from health care providers are less likely to access the health care they need, and may have a decreased quality of life.

Sean · Mar 31, 2021

Kalliope said: ↑

Patients with chronic illness who experience or anticipate stigma from health care providers are less likely to access the health care they need, and may have a decreased quality of life.
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And quantity.

The overall net effect of the BPS cult's influence is that morbidity and mortality rates will increase in many patient populations, due to delaying – or even completely preventing – the correct diagnoses and treatments.

Friend of mine died a few years ago from bowel cancer in their late-30s, after the symptoms being repeatedly dismissed by doctors in leading hospitals, and the correct diagnosis being delayed until it was too late.

Nobody here will be surprised to learn my friend was female.

Andy · Mar 28, 2021

<sarcasm> Wow, what a surprise....

https://twitter.com/user/status/1376094607394627586

https://twitter.com/user/status/1376094613652566018

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Mij · Mar 28, 2021

In her department, psychiatrists have begun asking patients if they’ve had the virus as part of their initial assessment.

“Because that flags for us that they are now at an increased risk for some kind of psychiatric or cognitive disorder and we need to start assessing for COVID-19 as part of our clinical assessment.”
Click to expand...

https://www.msn.com/en-ca/news/well...-19-patients-are-experiencing-ptsd/ar-BB1f2qh

Invisible Woman · Mar 28, 2021

In her department, psychiatrists have begun asking patients if they’ve had the virus as part of their initial assessment.
Click to expand...

And how are many of them supposed to know?

Dolphin · Mar 28, 2021

(Ireland)

No national data or specific health units for ‘Long Covid’ exist, HSE confirms
Click to expand...

https://www.independent.ie/irish-ne...r-long-covid-exist-hse-confirms-40248201.html

No mention of ME or CFS, or any term involving "post viral".

"The HSE said specific guidance on what has been referred to as the “long-tail” is “presently under development in Ireland” and that people who have had Covid-19 are “being followed up by their doctors as appropriate”. People who have been discharged from hospital following Covid-19 are followed up as appropriate by their team, the HSE said.

“Longer-term observational studies will be required to understand the health consequences presently being attributed to post Covid-19 infection. The HSE has been in touch with and will be engaging a group of people who are suffering post-Covid symptoms."
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Mij · Mar 28, 2021

POTS is a form of dysautonomia, or malfunctioning of the autonomic nervous system. That system regulates all sorts of bodily functions you normally don’t have to think, about including breathing, blood circulation and digestion. A key feature is that heartbeat rises markedly when people stand up after lying down. People don’t always notice this, Chung said, but they do notice that they feel lightheaded and exhausted. There’s considerable overlap between symptoms of POTS and another often-post-viral syndrome that can look like long COVID-19: ME/CFS or myalgic encephalomyelitis/chronic fatigue syndrome.
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https://www.inquirer.com/health/cor...dium=social&utm_content=&utm_term=&int_promo=

Dolphin · Mar 29, 2021

ME/CFS Experts Speak Out at #MEAction’s Long Covid Media Event

ME/CFS experts presented the intersection between long COVID and ME/CFS to some of the heavyweight media outlets in the world in #MEAction's recent press telebriefing.

The event was just the latest effort in #MEAction's massive media and clinician outreach campaign to cement the connection between ME/CFS and long COVID and protect the long haulers. Check out what happened at the telebriefing and what #MEAction has been up to in

ME/CFS Experts Speak Out at #MEAction’s Long Covid Media Conference
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https://www.healthrising.org/blog/2...out-in-meactions-long-covid-media-conference/

mango · Mar 29, 2021

Some important observations/reflections by a pwME about the contrived divide between long covid and ME in Swedish healthcare:

https://twitter.com/user/status/1376103861522419721

Google Translate said:

Almost every day I see new articles about #longcovid or #postcovid - about people who have been sick the whole pandemic, who have not received care, who have been disbelieved, who demand that new clinics open. And about the new clinics. About how the needs are met.

In parallel, I see statements that people with ME will "benefit from" the attention around long covid - that research and focus will "spill over positively" on ME. That the lessons will also benefit us.

I know that there is research on covid that specifically aims to understand how ME and other postviral conditions arise. There I can understand that it will also benefit ME patients.

But I can not understand how the research and medical care that has the label #longcovid specifically - would benefit ME patients as long as you are separating out ME as "something else". This is how I think it feels today.

Long covid is described as something new, something never seen before. Something strange where you have to start from scratch in healthcare and research. At the same time, we are millions of people around the world who are watching and recognizing, remembering the onset of our own illnesses.

We see ME clinics closing in parallel with the opening of postcovid clinics. Clinics that deal with the same problems (sometimes even staff go from one clinic to another) but where we [pwME] are not welcome.

Theoretically, two people who fell ill with similar symptoms during the pandemic will be treated completely differently by society depending on which infection they happened to fall ill with. This is what happens when you pretend that people weren't coming down with long-term illnesses after infections already before this.

The lack of historical awareness is enormously irritating. Both because it hurts to be ignored and excluded but also to see history repeated with seriously ill people who are mistrusted by the healthcare and support systems. That's not okay.

For example, why not open clinics for post-infectious conditions instead of earmarking entire clinics for long covid and excluding everyone else?

Now I can not write more. Regards / person with probable ME and POTS who has been ill for over ten years and fell ill after infection but still haven't been able to undergo a medical investigation or received adequate treatment due to there is no clinic I can go to.

(If you need to be investigated for ME, there is today one county council-affiliated specialist clinic in Stockholm. Another one has just closed. A clinic in Västerbotten will open eventually. It is about time, because there has never been an ME clinic north of Stockholm.)

(Before the pandemic, it was estimated that as many as 40,000 ME patients existed in Sweden and that only 1/10 of these had been diagnosed. The wait until the correct diagnosis can be many, many years. The risk of mistreatment and medical injuries is enormous.)
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ETA: The thread content is available as a Facebook post too, here.

mango · Mar 29, 2021

Opinion piece by the co-chairman of the Swedish association for ME patients, in Dagens Medicin (website for healthcare professionals in Sweden).

”Långtidseffekter av covid har slående likheter med ME”
https://www.dagensmedicin.se/opinion/debatt/langtidseffekter-av-covid-har-slaende-likheter-med-me/

Google Translate, English

Google Translate said:

"Long-term effects of covid have striking similarities with ME"

The current pandemic has shown that covid-19 infections can cause long-term and often very severe disease symptoms. It is now well documented in the daily press, for example in Svenska Dagbladet on February 8 by a number of doctors who themselves have been affected. Not infrequently, however, this is presented as if it were a completely new and previously unknown phenomenon that acute viral infections can turn into prolonged markedly impaired conditions. However, this is not a newly discovered medical phenomenon! [...]

when these symptoms are present after an acute illness for more than six months, they usually meet the criteria for ME, Myalgic Encephalomyelitis, sometimes ME/CFS. The so-called Long Haulers after covid-19 infection have striking similarities with ME patients. The age of onset, the gender distribution with about 80 percent women and the symptom profile, as well as the acute onset of infections, are in good agreement with ME/CFS. However, covid-19-triggered conditions appear to have more persistent lung damage than with conditions triggered by other infections. [...]

I would therefore now like to urge all actors, both authorities and researchers and clinics, who enter the field to work with long-term problems after covid-19 to read up on the experiences from the ME field - in research, clinical activities and patient organizations nationally and internationally!
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