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

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dave30th said:
It wasn't intended as a slight! I'm talking about the large respected media organizations--Times, Guardian, etc--and their regular correspondents.
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Ok I guess he’s been in the Mail which is more tabloid than broadsheet but his coverage at one time was better than anything we were seeing in the broadsheets especially the Guardian. The better articles in broadsheets are a pretty recent phenomenon
 
Also shared on my Twitter and Facebook accounts

Large Long COVID Study and Major Media Articles Underscore Link to
ME/CFS – Plus Countdown for the NIH

by Cort Johnson | Jan 22, 2021 | COVID-19, Homepage, NIH | 42 comments

ME/CFS scores as a large study cements the link between it and long
COVID just after over a billion dollars is slated to go for long COVID
research

<https://www.healthrising.org/blog/2021/01/22/long-covid-link-chronic-fatigue-syndrome/>

Here's Cort's own summary of this article:

The Gist

- Not long after Congress provides a billion dollars plus for
long-COVID research, a large web-based preprint study from the Body
Politic finds striking connections between the symptoms found in
long-COVID patients and people with ME/CFS.

- The top three symptoms in long COVID (fatigue, post-exertional
malaise and cognitive problems) are emblematic of those found in
ME/CFS.

- The vast majority of long-COVID patients reported experiencing an
exertion-triggered relapse.

- Over 20 percent were still unable to work after six months and
almost 50% were working part-time. Only about 25% were still working
full-time.

- Long-COVID patients also commonly reported problems with sleep,
cardiovascular and gut problems and a wide range of strange symptoms
that many people with ME/CFS will relate to.

- The study also uncovered a significant cohort of patients
distinguished by high levels of fatigue and no post-exertional
malaise.

- A recent long and in-depth feature New York Times article uses
ME/CFS experts to underscore the connection between ME/CFS and long
COVID.

- The NIH’s failure to develop programs to support long-COVID research
smacks of its approach to ME/CFS over the years.

- Despite acknowledging the immense nature of the long-COVID problem,
and knowing that long-COVID money was coming its way, the NIH has not,
almost a month later, provided a plan for spending the money.

- Meanwhile, as the vaccines roll out, the opportunity to the catch
long COVID in the act is beginning to diminish.
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Studio Ett: Fler högpresterande kvinnor långtidssjuka i covid
https://sverigesradio.se/artikel/fler-hogpresterande-kvinnor-langtidssjuka-i-covid

Interview, 11 minutes (audio, in Swedish). They talk about symptoms, how she was first dismissed and (falsely) diagnosed with anxiety, what the long covid specialist clinics can offer, dysautonomia, autoimmunity, prognosis, etc. Worth a listen.

Google Translate said:
More high-performing women with long covid

Many long-term patients with covid-19 testify to diffuse and prolonged symptoms. At the special wards that have been opened to treat long-term patients, it can be seen that a majority of those who seek care are formerly high-performing women aged 25-45.

Hear Emma Moderato, one of the young women affected. Also hear Judith Bruchfeld, chief physician and associate professor of infectious diseases, Karolinska Institutet's covid clinic.
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NIH launches database to track neurological symptoms associated with COVID-19

https://www.ninds.nih.gov/News-Even...Releases/NIH-launches-COVID-19-Neuro-Databank

A new database will collect information from clinicians about COVID-19-related neurological symptoms, complications, and outcomes as well as COVID-19 effects on pre-existing neurological conditions. The COVID-19 Neuro Databank/Biobank (NeuroCOVID), which was created and will be maintained by NYU Langone Health, New York City, will be a resource of clinical information as well as biospecimens from people of all ages who have experienced neurological problems associated with SARS-CoV-2 infection. The database is supported by the National Institutes of Health’s National Institute of Neurological Disorders and Stroke (NINDS).​

https://med.nyu.edu/departments-ins...stics/research/nih-neurodatabank-neurobiobank
 
mango said:
Studio Ett: Fler högpresterande kvinnor långtidssjuka i covid
https://sverigesradio.se/artikel/fler-hogpresterande-kvinnor-langtidssjuka-i-covid

Interview, 11 minutes (audio, in Swedish). They talk about symptoms, how she was first dismissed and (falsely) diagnosed with anxiety, what the long covid specialist clinics can offer, dysautonomia, autoimmunity, prognosis, etc. Worth a listen.
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Thanks for sharing, @mango

I wonder why they emphasised that "high-performing" women in particular are developing long Covid.

The medical specialist, Judith Bruchfeld, hypothesised that the reason for the large portion of women in this patient group, might be a possible autoimmune mechanism. She said nothing about the length of the patient's education, personality or way of life.

The patient, Emma, states clearly that she initially was dismissed with anxiety, and it was only due to her being resourceful and living in Stockholm that she eventually was able to find doctors who would actually examine her.

Assuming that those patients who are able to find their way to the few doctors who are able to help, are representative for the whole patient group, might turn out to be quite a blind spot.
 
Kalliope said:
I wonder why they emphasised that "high-performing" women in particular are developing long Covid.
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Another possibility is that "high-performing" women are more visible. Don't know but it can often be a matter of where one looks that determines what one finds.

ETA: I see further down your post after the part I quoted seems to be the same idea as this.
 
Snowdrop said:
Another possibility is that "high-performing" women are more visible. Don't know but it can often be a matter of where one looks that determines what one finds.

ETA: I see further down your post after the part I quoted seems to be the same idea as this.
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ie people with enough money to go doctor shopping actually find doctors interested in taking their money having significant funds = high performing .
 
Snowdrop said:
Another possibility is that "high-performing" women are more visible. Don't know but it can often be a matter of where one looks that determines what one finds.
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Yes, there's bound to be significant bias. People with fewer resources, be they financial, social or cognitive ones, simply won't get diagnosed.

But I also think patients, including the charities, inadvertently feed this obsession with "high-performing". When we first fall ill we're so shocked at what we can't do any more, and so desperate to make other people understand the severity of our affliction, that we stress all the things we used to be able to do easily and now can't. Plus we're afraid of being called lazy because that would immediately place us in the undeserving parasite on society category so we really stress what busy lives we used to lead. Next thing we get hit with the "perfectionist A-type" stick. Damned if we do and damned if we don't.
 
Long Covid: Why Recovering From Covid-19 Is a Feminist Issue
Multiple studies have highlighted the consequences of this mentality - ranging from large-scale female overdiagnosis of depression in the 1990s, to the present-day statistic that women wait an average of 16 minutes longer to receive pain medication than men in hospital. Compounding this disconnect between doctor and female patient further is the fact that, as with other illnesses mostly affecting women, like fibromyalgia and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), many of the symptoms of long Covid are invisible; the commonest being fatigue – not sleep-deprived tiredness, but an exhaustion that reverberates to the bone.

Speaking of CFS/ME, many long Covid sufferers now meet the diagnostic criteria for the condition, which affects four times as many women as men. After the first known outbreak cropped up in the 1950s at the Royal Free Hospital in London, when an unknown viral infection caused prolonged symptoms in 300 (predominantly female) nurses and other staff, it was branded ‘hysteria’ and written off as psychological (sensing a theme?). It didn’t receive medical recognition until the 1980s, and sufferers have had to fight for it to be taken seriously in the decades since. As recently as November, the National Institute for Care Excellence (NICE) removed two controversial, debunked 'treatments' from its recommendations - graded exercise therapy and cognitive behavioural therapy.

The parallels don’t end there; specialists have argued that Covid-19 could trigger a second pandemic of CFS/ME - not much of a reach given that research found 40% of those recovering from SARS were suffering with chronic fatigue three years after the 2003 outbreak. ‘If well-funded research had begun into CFS/ ME half a century ago, we’d be in a very different situation now with long Covid,’ argues Dr Ben Marsh, a consultant paediatrician who, due to CFS/ME has been unable to work for three years and describes himself as a ‘very un-useful house-husband’ to his breadwinner wife. Without that research on CFS/ME, he explains, there’s little robust evidence upon which doctors could build an effective framework for tackling long Covid.
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https://www.womenshealthmag.com/uk/health/female-health/a35263039/long-covid-feminist-issue/
 
WHO recommends that patients who have COVID-19 - both confirmed and suspected - should have access to follow-up care if they have persistent, new or changing symptoms.

This is one of the recommendations made by WHO in revised clinical management guidelines.

Evidence was gathered on the post COVID condition, so-called ‘long COVID’, where people who have recovered from COVID-19 continue to have longer-term issues like extreme fatigue, persistent cough and exercise intolerance.

Understanding this condition is one of WHO’s priority areas of work. In February 2021, WHO will organize a series of consultations to reach consensus on a description of this condition and its subtypes, and case definitions. This scientific understanding will inform the name of the condition. The consultations will include a broad range of stakeholders, including patient groups.
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https://www.who.int/news-room/featu...low-dose-anticoagulants-for-covid-19-patients


Post copied to the WHO thread
https://www.s4me.info/threads/news-...-cfs-long-covid-and-related-conditions.16426/
 
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I assume this will lead to a story. Look at all those "MUS"es and "FND"s, at least according to their definitions. Does not seem to give anyone pause, it's all so easy to say that for some it's medically explained and for others it isn't based simply on a positive test. Talk about having strong beliefs about illness.

 




ETA: Then Fauci goes on to say:
People get upset when you say that. I'm not saying that it is myalgic encephalitis (sic), but the constellation of symptoms that are unexplainable are quite similar.

And then he goes on to talk about how to proceed with research
 
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STAT News Denied Treatment, some Covid long-haulers could become lifelong-haulers

For most long-haulers, the illness is neither fatal nor curable. Their symptoms, like Michael’s, can resemble chronic fatigue syndrome or myalgic encephalomyelitis with crushing exhaustion, migraines, disrupted sleep patterns, and pain. Others have lung scarring or heart damage.

Originally written off by the medical community, doctors now recognize it with a variety of terms, such as post-acute Covid, chronic Covid, long Covid, or post-Covid syndrome. Long-haulers are more descriptive in their labels. I’ve heard it referred to as “a Dementor sucking my soul,” “living death,” and “an internal prison.”
 
Scientists are studying the similarities between long Covid and ongoing symptoms experienced by survivors of Ebola and Chikungunya virus in the hope of devising new treatments to improve their health.

Like patients with long Covid, survivors of these other, relatively new human viruses, often experience lingering symptoms which can make it difficult to work or function in everyday life.

For Ebola, roughly three-quarters of survivors are still experiencing symptoms a year after the initial infection, and sometimes for much longer – including joint and muscle pain, migraine-like headaches, visual problems and fatigue.

It’s a similar story for Chikungunya, a mosquito-transmitted virus that mostly affects people in African and Asian countries, causing fever and debilitating joint pain. Around a third of people go on to develop crippling arthritis that can last years, or other symptoms such as fatigue.
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https://www.theguardian.com/society...ng-covid-symptoms-to-those-of-ebola-survivors

“It’s the same kind of discussions as we’re having for Covid; it’s people whose lives have never been the same again, who describe joint pain and fatigue and cognitive problems and all those familiar lists,” said Danny Altmann, a professor of immunology at Imperial College London.

“The experience of Chikungunya and Ebola should be sounding alarm bells, because although we’re talking about very different virus families, and very diverse infections, they seem to do quite similar things. There’s a desperate need for some immunology to understand what’s going on,” he said.
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Just read that Guardian article myself – the final paragraphs stuck me too:

But if there’s another lesson to be learned from Chikungunya, it is that these patients with lasting symptoms can’t simply be ignored. “Chikungunya is destroying the Brazilian health service, and it’s not so much because of the acute infection, but because of these lasting health problems,” said Altmann.

“I’m not sure our policymakers have this on board when they think about long Covid – that we may not just be talking about getting through this winter or this spring, but perhaps 300,000 people in the UK and rising, who have a chronic problem.”
 
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