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

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Mithriel said:
The UK government have decided on a script and all the usual suspects are following it.

Back to normal, nothing happening anymore, just an exaggeration.
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What's amazing is that in going with denial, this guarantees the worst possible outcomes. Essentially medicine and governments are complicit in making every possible decision at every possible opportunity to make the problem the absolute possible worst while at the same time doing everything they can to dismiss and bury it entirely. Not a damn spine in sight out of health care, countering this obviously insane plan, it's deliberate complicity. Borne out of incompetence, but still.

Every decision, every choice, at every turn, is made almost precisely in the way that guarantees not only seeing the most possible cases but making certain that those affected get the worst possible advice and conditions, with the worst human and economic consequences.

Some "expertise" they got going on there. The very concept is going to take a beating. Maybe that's what will shake the complacency. Or more accurately, maybe that's what will force the hand of medicine to shake it, because that won't come from within. Experts are not supposed to willfully create the worst-case scenario, it makes a mockery of the entire notion of being an expert. And yet here they are doing just that, like preparing for wildfire season by putting gas tanks all over the place.
 
COVID and the brain: researchers zero in on how damage occurs

"How COVID-19 damages the brain is becoming clearer. New evidence suggests that the coronavirus’s assault on the brain could be multipronged: it might attack certain brain cells directly, reduce blood flow to brain tissue or trigger production of immune molecules that can harm brain cells.

Infection with the coronavirus SARS-CoV-2 can cause memory loss, strokes and other effects on the brain. The question, says Serena Spudich, a neurologist at Yale University in New Haven, Connecticut, is: “Can we intervene early to address these abnormalities so that people don’t have long-term problems?”

With so many people affected — neurological symptoms appeared in 80% of the people hospitalized with COVID-19 who were surveyed in one study1 — researchers hope that the growing evidence base will point the way to better treatments."

https://www.nature.com/articles/d41586-021-01693-6
 
rvallee said:
Some information from research in France on Long Covid. Nothing ground-breaking but it aligns with early data, which is always useful. Lots of data and stats. More interest on neurological than is typical, which is very nice. Some discussion of ME, not bad overall. A national study, named COCOLATE, has been officially launched. The 20-40 peak is maintained, which is REALLY interesting considering it has been consistent for ME.

Article: https://www.lejdd.fr/Societe/Sante/...-sur-les-formes-longues-de-la-maladie-4011338.
Translation: https://translate.google.com/translate?hl=en&sl=auto&tl=en&u=https://www.lejdd.fr/Societe/Sante/covid-19-ce-que-lon-sait-sur-les-formes-longues-de-la-maladie-4011338.

Alternative URL from The Conversation: https://theconversation.com/covid-1...it-on-des-formes-longues-de-la-maladie-142929.

Thread:



Some emphasis that this is not psychological, which is unfortunately necessary. Not much awareness of dysautonomia.
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It turns out that this study was not funded, or may be delayed, or whatever. At least according to this.
Cocolate2 could not start due to lack of budget, Pr Salmon launched with @institutpasteur the persicot study that started to be able to study innate and adaptive immunity before everyone is vaccinated. A point will also be made after vaccination
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Because if you don't study a problem does it even exist? You can certainly say it doesn't, or it would have been studied.

 
Braganca said:
Supposed success story treating long covid with a med called BC007, “directed against g-coupled antibodies”, developed by a group called BerlinCures. Anyone know anything about this? Being discussed on Twitter under hashtag #bc007.

https://translate.google.com/translate?hl=&sl=de&tl=en&u=https://www.br.de/nachrichten/wissen/erlanger-aerzte-heilen-erstmals-einen-long-covid-patienten,Sc0sNcQ

https://translate.google.com/translate?hl=&sl=de&tl=en&u=https://www.nordbayern.de/region/durchbruch-in-erlangen-weltweit-erster-patient-mit-long-covid-syndrom-erfolgreich-geheilt-1.11188786?fbclid=IwAR2M87Bh7cjJK16hQnRSQ58sVrOrCRYZhPiqSElK5Dw8Z2q24xU0GCUVN2w

One of the founders apparently developed immunoadsorption as well:

https://berlincures.de/the-team/
“Dr. Johannes Müller is an accomplished physician, researcher, innovator and entrepreneur with over 20 years of clinical and executive leadership experience in biotechnology and medical device companies.

He pioneered the development of immunoadsorption, a process for purifying the blood of autoantibodies implicated in heart failure, and led the first clinical trial to evaluate the effectiveness of immunoadsorption as a heart failure treatment.

Today at Berlin Cures, Dr. Müller leads the development of BC007, a DNA aptamer compound designed to more efficiently achieve the same results as immunoadsorption by binding to autoantibodies and removing them to improve heart function and to reduce the need for heart transplantation.”
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I'm not at all sold on the BC007 thing, just from the assumption of how hard it is to find a treatment that works without understanding the pathology and how historically it never pans out for us, but apparently they did research some years ago with pwME and found the same (GPCR-AABS?) antibodies.

May have been posted already, my memory is especially bad these days.

 
U.S. News Meet 3 Black Women Fighting for Long COVID Recognition
Article tells the stories of Long Covid sufferers Chimére Smith and Ashley Jackson and ME/CFS sufferer Ashanti Daniel

quote:
"Now we're adding a significant number of Black COVID long-haulers to a health care system that is already inherently biased towards us," Daniel said during a press briefing of long COVID and ME/CFS advocates in March. "The COVID-19 pandemic illustrates the intersection of structural racism and health and highlights why we need to address structural racism now."
 
Psychiatric Times: Developing a Collaborative Approach to Post-Acute Sequelae of SARS-CoV-2 Infection

Authors are psychiatrists from Harvard Medical School:

Long COVID-19 challenges clinicians more than ever to listen to patients and break down the false dichotomy between mental and physical health. The experience of feeling trivialized and frustrated by an overemphasis on the psychological components of illness has been shared by survivors of prior coronavirus epidemics such as severe acute respiratory syndrome (SARS) in early 2000s and Middle East Respiratory Syndrome in 2012.17 It also has been a common experience in patients diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a complex and disabling illness with features that overlap those of long COVID-19.18

The presentation of neuropsychiatric symptoms after COVID-19 are heterogeneous, and to some extent they may reflect variable and multifactorial causes. The either/or characterizations of symptoms by patients, clinicians, and society alike of psychogenic vs organic, psychological vs physiological, functional vs neurological, are all overly simplified and represent antiquated views of the brain-body connection.19,20 Breaking down long-standing silos in health care through the use of integrated multidisciplinary teams will be critical to finding more effective treatments.

Bridging this divide is urgent, not only to understand and treat the consequences of this pandemic, but also to face the longstanding issue of mental health stigmatization that serves as an enduring barrier to patients seeking care for their mental health.21 Patients with PASC are at risk of mental health consequences, whether it be from the direct consequence of the virus, indirect consequences of quarantine and the pandemic, exacerbation of preexisting conditions, and/or ongoing challenges of coping with a new, poorly understood, chronic illness.​

(...)

A number of patients with long COVID-19, similar to patients with ME/CFS, have postexertional fatigue.22 Therefore, pushing themselves to exercise beyond an identified energy envelope may be counterproductive and, in fact, propagate crash-and-burn cycles.22 For that reason, care must be taken in suggesting exercise, an otherwise recommended lifestyle intervention for improving stress, depression, cognition, and insomnia.​

Full article: https://www.psychiatrictimes.com/vi...oach-post-acute-sequelae-sars-cov-2-infection
 
Kalliope said:
Patient advocate Vlad appeals to dr. John Campbell to talk about Long Covid and ME. Starts at 9.40
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Worth watching. Vlad nailed it.

It really seems as if there is about to be a clash of ideology, science and common sense vs. the biopsychosocial model. Long Covid alone makes that strategy insane, on top of creating a breeding ground for variants. But the BPS ideology cannot reconcile that, sees it as a trivial non-problem that will actually feed in nicely with the IAPT machine and the mass psychologization of illness. Which of course only serves to maximize the problem, as usually happens when people are in denial.
 
The CDC has published this very disappointing report that shows they are not learning anything. Recommends standard exercise rehabilitation and therapy even though it recognizes the severity of the illness is so high LC patients are on average worse than cancer patients going to those services. Or says they could benefit from, because apparently learning from experience is not possible here.

There are better parts but overall shows people are anchored to the old model and can't let go of it. Clearly medicine can hold on to indefensible beliefs about "deconditioning" for well over a year.


Outcomes Among Patients Referred to Outpatient Rehabilitation Clinics After COVID-19 diagnosis — United States, January 2020–March 2021
https://www.cdc.gov/mmwr/volumes/70/wr/mm7027a2.htm

Patients recovering from COVID-19 might experience continued poor health and could benefit from additional support and tailored physical and mental health rehabilitation services. Health care systems and providers should be prepared to recognize and meet the ongoing needs of this patient population. Efforts to increase COVID-19 vaccination could include messaging that states that preventing COVID-19 also prevents post–COVID-19 conditions with potential effects on long-term health.​

I'm still unsure what "mental health rehabilitation" even means in that context. I don't think that's a thing, other than the BPS tropes of "illness beliefs".
 
A Norwegian article about MIS-C in Swedish children. (I haven't seen any similar reporting in Swedish media.)

Dennis (16) fikk hjertesvikt etter korona
https://www.nrk.no/norge/dennis-_16_-holdt-pa-a-do-som-en-reaksjon-pa-korona-1.15567837

Google Translate, English ("Dennis (16) got heart failure after corona")

Around 250 children and young people in Sweden who have been sick in covid-19 have subsequently been affected by MIS-C (Multisystem Inflammatory Syndrome in Children). In comparison, there have been about 25 cases in Norway.
Auto-translate said:
Half of them did not know that they had had corona, while half had had a mild illness 4-6 weeks earlier.

- None of those who developed MIS-C had severe corona, Kahn points out.

The youngest children are less than one year old, but the average age is nine. They have high fever, and may have swollen and red hands, patches on the body, stomach pain and vomiting. Ten-year-olds get most seriously ill.

- Internationally, the mortality rate is around 2 percent. We've had children who have been very sick and who have hovered between life and death, he says.

Translated with www.DeepL.com/Translator (free version)
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Region Skåne is currently doing some research into MIS-C:

Ny forskning på Sus ska sprida ljus över MIS-C
https://vard.skane.se/skanes-univer...-forskning-pa-sus-ska-sprida-ljus-over-mis-c/

Google Translate, English
Auto-translate said:
Serious condition

Usually, children do not get very sick from covid-19 and recover quickly. However, 2-6 weeks afterwards they may suffer from MIS-C. Children admitted to hospital with MIS-C are severely ill with high fever, abdominal pain, sometimes a rash on the body and breathing difficulties.

- They feel really bad and often need intensive care or intermediate care during the hospital stay," says Helena Elding Larsson, head of operations at the Paediatric Medicine Unit at Skåne University Hospital.

MIS-C is a serious condition, but the prognosis is good if the child gets to hospital in time and is treated with powerful anti-inflammatory drugs.

Translated with www.DeepL.com/Translator (free version)
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Auto-translate said:
* MIS-C is an acronym for Multisystem Inflammatory Syndrome in Children.

* The disease is rare and can affect children of all ages. Most often, children become ill within 2-6 weeks of a covid infection.

* The condition involves severe inflammation of the body, with the child having a high fever and affecting one or more organs in the body.

* There are no specific risk groups for MIS-C; most of those affected have been healthy children.

* Children can also develop post-covid or PASC, Post-Acute Sequalae of SARS-COV-2 infection, after covid-19. The condition is distinct from MIS-C and can be described as a prolonged infection with diffuse symptoms such as fever, fatigue, headache or sleep disturbances. There are no statistics on the number of children affected.

Translated with www.DeepL.com/Translator (free version)
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‘Their childhood has been stolen’: calls for action to tackle long Covid

"A growing cross-party group of MPs and peers is demanding an urgent overhaul of the services offered to sufferers of long Covid amid warnings that thousands of new cases will emerge every day as coronavirus restrictions are lifted this summer."

.....

"Part of the work at long-Covid clinics is helping sufferers discover their physical limits, because overexertion one day can lead to days or weeks in bed. That’s much harder for Gracie, her mother said. “Now, if she wants to walk to the park and see her friends, you know that a couple of days later she’s not going to be able to get out of bed for two days. It’s heartbreaking.”"

https://www.theguardian.com/society...-stolen-calls-for-action-to-tackle-long-covid
 
"Some people never recovered from Covid-19 and patient-led groups and academics are now studying Long Covid. How do we consolidate and share what we know so we can uncover causes and treatments more rapidly? Collaboration begins with conversation.

Moderated by Sadie Whittaker, our chief scientific officer and a You + ME Registry architect, this three-part series brings together those collecting data on Long Covid to share preliminary findings and answer questions from our virtual audience.

Session 1 features Dr. Nisreen Alwan and Dr. Natalie Lambert."

Code: 
https://www.youtube.com/watch?v=gDSioe4b68E

 
Nightsong said:
This just came up in my news feed:

https://www.dailymail.co.uk/health/article-9775925/Can-long-Covid-cured-monthly-dose-vaccine.html

Dr David Strain (AfME's new medical adviser) is planning a trial to determine if repeated vaccination alleviates the symptoms of long COVID.
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Just adding a few quotes from the article.

Quotes:

Dr Stain said: 'The plan would be to recruit patients whose symptoms are so severe their lives are severely limited by the condition. Those, for example, who can't go to work or pack their child's lunch in the morning because they feel so fatigued.

'We would offer them the jab at a long Covid clinic and they'd return for another the following month.

'The jabs cost roughly £15 a dose, and if it can get hundreds of thousands of Britons back to normality then it would be a very cost-effective treatment.'

The trial will be the first time in the world a Covid-19 vaccine will be used for any purpose other than protecting people against the virus itself.

At a time when vaccines are in short supply, it is expected to raise ethical questions.

But Dr Strain is clear the vaccines being used will not have been taken out of the supply chain. Instead, manufacturers have offered to provide 'outdated' jabs.

He said: 'Right now all the manufacturers are designing their second-generation vaccine. These will be designed to combat the Delta [Indian] variant, as well as the South Africa variant, which many worry is highly resistant to current jabs.

....

Another popular theory is that the virus destabilises the immune system – some studies suggest that Covid can affect the mitochondria, the power-house within cells which supplies them with energy.

Experts say this can cause the immune system to malfunction and attack healthy cells.

Similar mitochondrial dysfunction has been observed in patients with chronic fatigue syndrome, which shares many symptoms with long Covid.

Dr Strain believes this is the most likely theory, and argues the vaccines are, even temporarily, shutting off this overactive immune response.

He said: 'It's possible that, by focusing the immune system on the act of developing Covid antibodies, it can reset the cells which are misfiring. It's akin to turning a faulty computer off at the plug and restarting it.'
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Dr. Rehan Mustafa, a respiratory medicine consultant running a long Covid Clinic says patients with swollen joints should be treated with anti-inflammatory drugs and those with brain fog may need to see a psychiatrist. He further says that the approach used in long Covid clinics already has a positive impact and that "treating long Covid is about holding the patient's hand as they slowly move back towards full health".
 
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