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

[Andy]

Long COVID: tackling a multifaceted condition requires a multidisciplinary approach

In their Comment, Dana Yelin and colleagues highlight the persistent, heterogeneous, and recurring symptoms of long COVID. A Lancet Editorial asks for better research and care to avoid years of struggle for individuals with long COVID. We write following an international, multi-stakeholder forum, in which peoples' voices were central, to expand the call to action and to identify how we can prevent long COVID from becoming the long-lasting legacy of COVID-19.

On Dec 9–10, 2020, the International Severe Acute Respiratory and Emerging Infection Consortium (ISARIC), the Global Research Collaboration for Infectious Disease Preparedness (GloPID-R) research funders group, and Long COVID Support, a global patient group, held the Long COVID Forum (appendix pp 1–2). We brought together people living with long COVID, interdisciplinary researchers, funders, public health experts, and policy makers, including WHO, in a global public forum to identify research gaps to inform urgent long COVID research and support priorities.

https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(21)00043-8/fulltext

 

[Andy]

Decoding the unknowns in long covid

Relatively few peer reviewed papers have documented the disease features of “long covid,” but patient groups report several months of sequelae. These can be varying, relapsing, and remitting, and may include respiratory, cardiovascular, urological, neurological, and/or gastrointestinal symptoms in unpredictable combinations. We do not know whether long covid will come to be seen as a condition that typically lasts months, years, or is life long.

Many of the risk factors for severity of acute covid-19, such as age, male sex, obesity, and ethnicity do not appear explicitly to enhance the chance of long covid. Also, there seems no clear correlation between severity of the acute disease and long term sequelae. Indeed, many patients come from that large, hidden group who self-isolated when they were unwell at home, did not access a polymerase chain reaction test, and so have no formal health record of covid-19. These points highlight an uncharted pathophysiology, and demand a better answer than “post-viral syndrome” or the notion that people are bound to “feel a bit rough” coming out of hospital.

https://www.bmj.com/content/372/bmj.n132

 

[Dolphin]

For what it is worth:

Post-COVID-19 Symptom Burden: What is Long-COVID and How Should We Manage It?
https://assets.researchsquare.com/files/rs-164000/v1/c2f9af85-34fd-4b63-9f40-629847cfd4e2.pdf

Dominic Lee Sykes (  dominic.sykes@hey.nhs.uk )
Hull University Hospitals Trust https://orcid.org/0000-0002-0925-7772
Luke Holdsworth
Hull University Teaching Hospitals NHS Trust
Nadia Jawad
Hull University Teaching Hospitals NHS Trust
Pumali Gunasekera
Hull University Teaching Hospitals NHS Trust
Alyn H Morice
Hull York Medical School
Michael G Crooks
Hull York Medical School

Data from the COVID symptom study App identied self-reported fatigue as the commonest complaint in a large group of Long-COVID patients [8]. If these symptoms were persistent at 4 months, they would meet the National Institute for Health and Care Excellence (NICE) diagnostic criteria for Chronic Fatigue Syndrome (CFS). A CFS diagnosis is considered when patients report post-exertional fatigue, cognitive diculties, sleep disturbance, and chronic pain [16]. This is a remarkably similar symptom complex that we and others have observed in Long COVID. There are also marked epidemiological similarities. Female preponderance is well described in the CFS literature [17] and obesity is also associated with greater symptom burden [18]. Both of these demographics were associated with greater symptom burden in our study, particularly those symptoms commonly described in CFS. Although the aetiology of CFS remains obscure, viral triggers have been hypothesised [19]. CFS services in the UK provide a tailored approach to the management of patients. A multifaceted service is provided, including symptom management, psychological treatments, employment support, and education about their condition [16]. It may be appropriate to incorporate these principles in Long-COVID service provision to ensure the effective management of our patients.

 

[Andy]

Preprint: Preliminary Evidence on Long COVID in children

There is increasing evidence that adult patients diagnosed with acute COVID-19 suffer from Long COVID initially described in Italy.

To date, data on Long COVID in children are lacking.

We assessed persistent symptoms in pediatric patients previously diagnosed with COVID-19. More than a half reported at least one persisting symptom even after 120 days since COVID-19, with 42.6% being impaired by these symptoms during daily activities. Symptoms like fatigue, muscle and joint pain, headache, insomnia, respiratory problems and palpitations were particularly frequent, as also described in adults.

The evidence that COVID-19 can have long-term impact children as well, including those with asymptomatic/paucisymptomatic COVID-19, highlight the need for pediatricians, mental health experts and policy makers of implementing measures to reduce impact of the pandemic on child’s health.

https://www.medrxiv.org/content/10.1101/2021.01.23.21250375v1.full-text

 

[Kalliope]

The Japan Times Japanese doctors warn of long-lasting COVID-19 aftereffects among young people

It is important for people who have recovered from COVID-19 to refrain from exercising for a while, Hirahata said, warning that just taking a walk can cause their condition to deteriorate.

“In one case, a patient became bedridden after exercising forcibly and was dismissed from the workplace,” he said. “I want the government to earnestly tackle the problem by taking measures such as letting the public know of the issue so that patients who suffer from the aftereffects will not face disadvantages.”

 

[MEMarge]

For what it is worth:

Post-COVID-19 Symptom Burden: What is Long-COVID and How Should We Manage It?
https://assets.researchsquare.com/files/rs-164000/v1/c2f9af85-34fd-4b63-9f40-629847cfd4e2.pdf

Hmm.....

 

[mango]

Last week an independent group of Swedish physicians with long covid published clinical guidelines for long covid.
http://www.langtidscovid.se

There's a news article on this in the journal of the Swedish Medical Association:

Läkartidningen: Läkare med långtidscovid publicerar kunskapsöversikt

"A group of doctors who themselves have the disease are now publishing their own knowledge review about long covid, while waiting for the National Board of Health and Welfare to publish something."

 

[mango]

Thanks for sharing, @mango

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

An easy way to suggest it's all about a maladaptive stress response and unhealthy behaviour, maybe? Put the blame on the patient instead of the virus?

Long-term covid common among high-performing women

More men die in covid-19. But young and high-performing women are overrepresented when it comes to sick leave in long-term covid, Göteborgs-Posten reports.

One explanation could be that the people in the group have pushed the limits of what the body can handle, according to Professor Katharina Stibrant Sunnerhagen. But the patient association Swedish covid association believes that the disease occurs in all age groups, and rather believes that the over-representation is due to the fact that high-performing women are more easily taken seriously by the healthcare system.

Sweden's Minister of Research Matilda Ernkrans (S) states that more knowledge is needed.

- This is something we need to take seriously, she says.

The original news article they are referring to is behind a paywall.

 

[rvallee]

Last week an independent group of Swedish physicians with long covid published clinical guidelines for long covid.
http://www.langtidscovid.se

There's a news article on this in the journal of the Swedish Medical Association:

Läkartidningen: Läkare med långtidscovid publicerar kunskapsöversikt

"A group of doctors who themselves have the disease are now publishing their own knowledge review about long covid, while waiting for the National Board of Health and Welfare to publish something."

Not terrible but they have clearly not looked much beyond their own experience, it's very limited. Hard to expect much, but it's definitely a good thing not to wait for medical authorities, they have clearly no intention of doing anything to risk their beloved herd immunity. Doubtful this goes anywhere, frankly.

At least they warn against GET. Otherwise it's frankly mostly poor or generic and seems to assume that it's just a matter of trying unless there is organ damage. Positive thinking is good in most circumstances but misguided hope helps no one. Frankly most patients groups with no input from physicians do better, as at least they research existing information on chronic illness. Here they wear their physicians hat and bring with them the flawed thinking that has dismissed chronic illness forever.

 

[mango]

The Swedish government has proposed that 50 million SEK be earmarked for long covid research. The Swedish Research Council (Sweden’s largest governmental research funding body) has now been tasked to prepare for distributing the money.

https://www.regeringen.se/pressmedd...gallande-forskningssatsning-om-langtidscovid/

 

[mango]

Sahlgrenska University Hospital in Sweden is starting a long covid study.

They will investigate what symptoms are common among those who have not been seriously ill, but have been having symptoms for a long time. More than 55 000 people will be invited to participate.

https://www.svt.se/nyheter/lokalt/vast/ny-covidstudie-inleds-pa-sahlgrenska

 

[mango]

A couple more articles today in Sweden, about long covid.

Many with long covid feel disbelieved

Many who have been ill with covid-19 for a long time state that they feel disbelieved by the healthcare system, says the Swedish covid association to Swedish Radio Ekot. Many also believe that their symptoms are being belittled and there are those who have wrongfully been given psychiatric diagnoses.

- We have members who have gotten everything from psychiatric diagnoses in the medical record to being sent to a psychologist or psychiatrist, says Åsa Kristoferson Hedlund, chairman of the Swedish Covid Association, to the radio.

The National Board of Health and Welfare, which confirms the situation but does not know how many people are affected, is now investigating this group of patients.

- I think this may have been the case in some, or many cases even, when you did not know the disease better. But I also believe that everyone out there has done their best to actually take care of the patients based on the limited knowledge that existed, says Thomas Lindén at the National Board of Health and Welfare.

https://tt.omni.se/manga-med-langtidscovid-kanner-sig-misstrodda/a/OQjplO

https://sverigesradio.se/artikel/flera-med-langtidscovid-kanner-sig-misstrodda-av-varden

It doesn't sound like the National Board of Health and Welfare realizes the severity of the problem, does it? Just like stigmatization and discrimination related to ME it is often talked about in the past tense, as if it isn't still happening. Why? So there's no need to actually take responsibility and do something about it?

 

[Andy]

From a Solve email

Solve M.E. President Oved Amitay Joins World Health Organization Seminar on Long COVID

Solve M.E. President and CEO Oved Amitay will join other experts as a participant in a series of seminars presented by the World Health Organization (WHO) designed to improve our understanding of the Post COVID-19 condition and optimize the health of patients who have suffered from COVID-19.

Amitay will be featured in the first webinar, Expanding Our Understanding of the Post COVID-19 Condition, held tomorrow, Tuesday, Feb 9, 2021, from 1-6pm CET (4 am-9 am PST). The focus of the webinar will be on finding consensus on the clinical description of Post COVID-19 condition, based on the most up-to-date evidence, acknowledging the uncertainties and defining research priorities.

In it, Amitay will share insights from other post viral diseases, such as ME/CFS, and highlight the scientific opportunity to bridge existing knowledge gaps to benefit people with Post COVID-19 condition, as well other diseases.

The goal of the WHO seminars is to create a forum for sharing scientific data and clinical experiences, while also building collaborations for future research.

To register for this webinar, follow the link below:

http://go.solvecfs.org/e/192652/ster-WN-r1LkC1VRSHCTG7u2nOghjQ/297v2z/190733399?h=Wv8fhTfVGesuyVqoh7OH5U8kSrHXNcT1CGthFLZ8-eY

Upon registration, participants will receive a confirmation email with the information about joining the webinar (Zoom connection details).

Registration will close on Feb 8, 2021 (end-of-day CET).



Discussion of this WHO seminar continues here:
News about the World Health Organisation and ME/CFS, Long Covid and related conditions

 

[mango]

Opinion piece in DN (Sweden's largest morning news paper) by doctors suffering from long covid themselves:

DN: Sverige senfärdigt kring långtidscovid ("Sweden is late on long-term covid")
https://www.svd.se/sverige-senfardigt-kring-langtidscovid/i/senaste

The latest data confirms what we as doctors and patients experience. Long-term covid is not a delayed recovery phase after undergoing acute infection, but a new disease picture that includes serious effects on several organ systems. In the disease picture, a fluctuating course is often seen, which is often aggravated by attempts at rehabilitation. The condition differs radically from fatigue after infection or other suites after more well-known infectious diseases such as influenza or glandular fever. The patient group is also completely different from those hospitalized for covid-19, who are often elderly and at risk groups. The long-term sick are instead younger, previously healthy and active individuals, and children and young people are also affected. Long-term covid is a new medical condition that requires research, investigation and treatment. [...]

The need for medical care, knowledge development and knowledge dissemination for this new patient group is urgent.

We suggest:

* Urgently develop national guidelines and knowledge support. Use diagnostic criteria and guidelines for investigation and treatment that already exist in other countries.

* Assume that the prevalence of long-term covid in other countries also applies to Sweden, ie 10 percent of all infected people can be affected.

* Task the regional healthcare systems to set up local and regional clinics for diagnosis, follow-up and treatment of long-term covid.

* Task the National Board of Health and Welfare and the regional healthcare systems to provide competence development for doctors in contact with patients with long-term symptoms. Use digital platforms, e-learning, newsletters, etc. Collaborate with the Association of Physicians and other professional associations.

 

[Dolphin]

Opinion piece in DN (Sweden's largest morning news paper) by doctors suffering from long covid themselves:

DN: Sverige senfärdigt kring långtidscovid ("Sweden is late on long-term covid")
https://www.svd.se/sverige-senfardigt-kring-langtidscovid/i/senaste

The condition differs radically from fatigue after infection or other suites after more well-known infectious diseases such as influenza or glandular fever. The patient group is also completely different from those hospitalized for covid-19, who are often elderly and at risk groups. The long-term sick are instead younger, previously healthy and active individuals, and children and young people are also affected. Long-term covid is a new medical condition that requires research, investigation and treatment.

It may bring in more money to describe it as "new" but does it really "differ radically" from other postinfectious diseases.

 

[Snowdrop]

The doctors in the article should come here and find out the reality of 'those other postinfectious diseases'. Seeing this always feels like we're rolling a boulder uphill.

 

[mango]

It may bring in more money to describe it as "new" but does it really "differ radically" other postinfectious diseases.

The constant highlighting of this made-up separation is clearly a pattern, at least here in Sweden. ME is simply not part of the discussion.

Have a look at all the long covid related Swedish articles (news, medical, opinion pieces, governmental reports, politics, public health etc), and you'll quickly see that ME is very rarely mentioned, or is described as something "other". It's not mentioned by the long covid activists, nor by the doctors at the long covid clinics, the long covid researchers, the primary care health professionals, the politicians, the National Board of Health and Welfare, the government, the Public Health Agency, the Swedish Research Council, the long covid activists criticising the Social Insurance Agency's policies... and so on.

The only ones who seem to been keen on mentioning CFS (ME) and other post infectious diagnoses are those writing opinion pieces about "culture-bound syndromes", claiming that ME doesn't exist, suggesting that "fearmongering" by patient organisations is causing trauma that might cause psychosomatic symptoms and other mental health problems, and those having opinons about so called "high-performing" women's behaviour and mental health etc

 

[Snowdrop]

ME doesn't even need to be 'exactly' the same to be treated with the same consideration as to it's effects on a person and the need for proper investigating.

 

[Andy]

A great video conversation from "Long Covid Physio" and Canadian researcher Simon Décary.

"Simon Décary is Assistant Professor of Physiotherapy within the Patient-Oriented Rehabilitation Lab (SPOR-REHAB), University of Sherbrooke, Quebec, Canada. Simon's background is researching shared decision making in healthcare. He was awarded the only funding in Canada to study Long Covid rehabilitation interventions. In this podcast Simon shares the incredible journey from initial study design and huge learning curve the team have been through, leading them to stop, reflect, learn, and change the study objectives and interventions. Simon shares his honest and transparent reflections of how working with people living with Long Covid and ME/CFS advanced this research study for the better."

Identifies the limitations of the Chalder Fatigue Scale, including the ceiling effect, issues with the PACE trial, Cochrane review, and how his study on exercise rehab for Long Covid turned into a trial of pacing following feedback from Long Covid and ME patients.

https://youtu.be/3uf-TT9bzNI

Also available as a podcast from various providers, details here https://longcovid.physio/podcast

 

[Andy]

Physical Therapists Living With Long COVID, Part 1: Defining the Indefinable

https://www.jospt.org/do/10.2519/jospt.blog.20210203/full/