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

[Sasha]

Ominous:

How long it will take long-Covid patients to recover remains unknown. Dr. Putrino said most of them won’t get better on their own, and will need at least six months of structured rehabilitation.

 

[rvallee]

Management of the long term effects of COVID-19 (RCGP)

https://elearning.rcgp.org.uk/plugi...rm effects of COVID-19_formatted_29.10.20.pdf

It's not all bad. Actually many parts are actually... pertinent. Which is refreshing.

But it veers off into kookooland rather quickly:

Psychiatric and psychological symptoms were described in 76%, which included sleep disorders in addition to mood changes, but it is important to note that until the evidence tells us otherwise, we should always consider whether mood changes are primary symptoms, secondary changes relating to the long term effects of the disease, an adjustment disorder or the adaptation to “being unwell” with the feeling that their COVID-19 illness will “never end”.

"Consider" that all you want, you are referring to a magical skill that no human in existence has ever possessed so let's skip the pretense that such magical powers exist, perhaps? No?

And then falls completely flat by the end and promises more of the same failure:

Onward referral for treatment to community or secondary care will depend on your patient’s needs. They may be satisfied knowing there is no other underlying cause for their symptoms and opt to self-care, they may require referral to secondary care for further investigation/ treatment, or onward referral to community services, where they exist, for rehabilitation or psychological support.

I have so far not seen a single person with Long Covid who is "satisfied" that there is no underlying cause for their symptoms. Actually literally the opposite because people aren't as stupid as medicine seems to believe and understand that without an understanding of their symptoms, no one can help. People can connect two dots right next to one another. It's a thing that people can do.

So the approach seems to be to say a bunch of things that aren't completely wrong but remain with the existing BPS ideology, in fact double down on it. Bold strategy, let's see how it plays out.

 

[Tom Kindlon]

Merged thread

Free full text:

http://www.ieti.net/tes/2020V4I103.html
How would a post-virus chronic fatigue syndrome affect the performance of workers that fell ill from COVID-19? (full text in pdf)

Panagiotis V. Tsaklis1,2,3,a
1 Department of Physical Education and Sport Science. University of Thessaly, Trikala, Hellas
2 Department MMK Karolinska Institute, Solna, Sweden
3 Center of Orthopaedics and Regenerative Medicine (C.O.RE.) - (C.I.R.I.) - Aristotle University Thessaloniki, Hellas
atsaklis@uth.gr
Abstract In this paper, it is considered how a post-virus chronic fatigue syndrome affect the performance of workers that fell ill from COVID-19.

 

[Trish]

Free full text:

http://www.ieti.net/tes/2020V4I103.html
How would a post-virus chronic fatigue syndrome affect the performance of workers that fell ill from COVID-19? (full text in pdf)

Oh dear, what a muddle. It seems to suggest that only people who have been hospitalised with Covid get CFS, and recommends GET.

 

[Sasha]

Bold strategy, let's see how it plays out.

Anything we can collectively do to stop it playing out?

 

[Sly Saint]

Long COVID Patients Warned of Damaging Exercise Programme

#MEAction UK is getting the message out – don’t exercise if you have post-exertional malaise. We’ve sent a press notice to the UK media ahead of the release of draft revised National Institute of Health and Care Excellence guidelines on ME/CFS on 10th November. We’re highlighting the links between “Long Covid” and ME. In particular, we want people at risk to know about the danger of exercise if they have post-exertional malaise. We’ve already had a great article in Scottish Sunday Express and we will be doing more in depth work with press contacts before we put out a statement about the draft guidelines.

Click below to read the Scottish Sunday Express article:

https://www.meaction.net/2020/11/03/long-covid-patients-warned-of-damaging-exercise-programme/

 

[ladycatlover]

Oh dear, what a muddle. It seems to suggest that only people who have been hospitalised with Covid get CFS, and recommends GET.

Whereas it's mainly people who didn't go to hospital at least from what I can make out on Twitter. It really is difficult for these people, they aren't really getting help from anywhere, and because they didn't get tested they are told they didn't have Covid so they don't get any help. It's scandalous really. I'm very worried about some of the people I follow.

 

[mango]

Aftonbladet: Svåra hjärnsymtom kan drabba även de med mild covid
Professorn: Som en boxare mår efter att ha blivit knockad
https://www.aftonbladet.se/nyheter/a/PRRyaJ/svara-hjarnsymtom-kan-drabba-aven-de-med-mild-covid

Google Translate, English

Severe brain symptoms can also affect those with mild covid
Professor: Like a boxer feels after being knocked out

Early in the pandemic, covid-19 was seen to affect the brains of patients admitted to hospital. They had personality changes, were confused and had memory problems.

Now there are reports that covid patients with milder symptoms also suffer from brain damage. It is about brain fatigue, memory problems, difficulty performing simple daily tasks and personality changes.

"Like being knocked out"

Other symptoms include sensitivity to sound and light, headaches and mood swings. Symptoms you usually associate with those you get after a concussion or from the disease ME, myalgic encephalomyelitis.

- I can imagine that this is how a boxer feels after being knocked out, this is a sign of a moderate brain injury, says Bengt Winblad, professor at Karolinska Institutet, who warned early on about brain injuries in covid patients. [...]

 

[Andy]

But, but, deconditioning??

Long Covid: Oonagh Cousins, GB rower, on the effects

Though it's not linear, Cousins' recovery is moving in the right direction. She has attempted to return to steady training, but isn't quite ready for exercise yet.

As frustrating as it may be, she now realises the importance of listening to and trusting her body, and will give it the time it needs.

"I don't have a lot of resilience," she says. "I can do a little bit of daily activity - like I can go and see my friends or I can go to the shops or whatever - but exercise is different.

"There's no definitive timeline, but I need to have a period of time where I feel really good and almost to the point where I'm begging to go back to training before I can actually start training again because my body just needs to build up its resilience again."

https://www.bbc.co.uk/sport/rowing/54702500

 

[rvallee]

Whereas it's mainly people who didn't go to hospital at least from what I can make out on Twitter. It really is difficult for these people, they aren't really getting help from anywhere, and because they didn't get tested they are told they didn't have Covid so they don't get any help. It's scandalous really. I'm very worried about some of the people I follow.

I assume that some part of this is that those who went to the ICU have follow-up medical care and so are in less dire circumstances despite being worse off. Who knew that medical care made a difference in health outcomes? What a surprise!

 

[rvallee]

Grandiose claims rarely pan out, especially premature ones.

 

[Dolphin]

 

[Dolphin]

 

[Kalliope]

Red Clinic has published a statement on their website:

http://www.redclinic.se/sv/index_sv.html

Red Clinic now says their application for ethical approval of the research project "The Scandinavian Post-CoVID Cohort Study - SPCC" has been accepted and links to an upload of the approval

 

[rvallee]

Persistent symptoms 3 months after a SARS-CoV-2 infection: the post-COVID-19 syndrome?

https://openres.ersjournals.com/content/6/4/00542-2020

Odd mentions that this is the "first" evidence makes this paper a bit... odd. The first papers were out months ago. But overall not bad. Non-ICU only but had some hospitalized patients.

Methods A total of 2113 members of two Facebook groups for coronavirus patients with persistent complaints in the Netherlands and Belgium, and from a panel of people who registered on a website of the Lung Foundation Netherlands, were assessed for demographics, pre-existing comorbidities, health status, date of symptoms onset, COVID-19 diagnosis, healthcare utilisation, and the presence of 29 symptoms at the time of the onset of symptoms (retrospectively) and at follow-up (mean±sd 79±17 days after symptoms onset).

Results Overall, 112 hospitalised patients and 2001 nonhospitalised patients (confirmed COVID-19, n=345; symptom-based COVID-19, n=882; and suspected COVID-19, n=774) were analysed. The median number of symptoms during the infection reduced significantly over time (median (interquartile range) 14 (11–17) versus 6 (4–9); p<0.001). Fatigue and dyspnoea were the most prevalent symptoms during the infection and at follow-up (fatigue: 95% versus 87%; dyspnoea: 90% versus 71%).

The study appears limited to a list of 29 symptoms. Which may seem like a lot but in this case misses a lot. Oblivious to PEM. Oh well.

Patients reported a median number of 14 (11–17) symptoms, and 97% of the respondents had >5 symptoms (figure 1). The difference in median number of symptoms per subgroup was small but significant, being highest in nonhospitalised patients with a symptom-based diagnosis (table 2). Fatigue (94.9%) and dyspnoea (89.5%) were by far the most prevalent symptoms in all the four groups.

Not a reliable predictor but initial number of symptoms appears to be significant:

Following a mean period of 79±17 days (the time between the onset of the first symptoms and completing the questionnaire), the number of symptoms reduced significantly. Indeed, there was a median change of −7 (−10 to −4) symptoms per respondent (p<0.001; figure 1).

Of the independent variables, the number of symptoms during the infection was responsible for the largest unique contribution (β=0.58, p<0.001).

That's unfortunately muddled by their limited list of symptoms, it's entirely possible that a number of new symptoms are missed simply because they didn't ask for them. A lot could be hidden in that "Others". Why is it so common in medicine to make arbitrary assumptions like that?

Hmm, and then there's... that:

The authors emphasise that readers have to be cautious with the external validity of the current findings, as mostly women responded, whom are more likely to present themselves with symptoms than men

 

[Dolphin]

Persistent symptoms 3 months after a SARS-CoV-2 infection: the post-COVID-19 syndrome?

https://openres.ersjournals.com/content/6/4/00542-2020

Moreover, to date it remains unknown whether and to what extent symptom burden post-COVID-19 is comparable with symptom burden in other post(-respiratory)-infectious syndromes. Indeed, it is important to note that in contrast to other post(-respiratory)-infectious syndromes a large array of atypical symptoms such as diarrhoea, heart palpitations, headache, ageusia, anosmia, fever/increased body temperature, are reported months after the infection.

Is this really different to other postinfectious syndromes?

 

[alktipping]

Grandiose claims rarely pan out, especially premature ones.

exactly what to would expect from people who see medicine as a money making venture rather than a field of interest that would allow you to help your fellow human beings . a downstream effect is not the cause but an excuse to market a test kit that has been patented like many test kits they will be of no practical use to the people who paid for them.

 

[JemPD]

The authors emphasise that readers have to be cautious with the external validity of the current findings, as mostly women responded, whom are more likely to present themselves with symptoms than men

wow

 

[rvallee]

Bit more specific to GI symptoms but since they are common with PVFS and ME I think it's pertinent as there's no explanation for GI symptoms, whether short term of chronic. Biopsies taken at 6 months from the ileum or duodenum found virion reservoirs as well as SARS-CoV-2-specific antigens. There are other topics that are way over my head but relevant biopsy discussion is at page 20. All participants negative on a saliva PCR test.

First paper I have seen published that acknowledges the common symptom of PEM. That sure took a while. Although somehow they call it "deficit in athletic ability". First reference and it's misinterpreted. Baby steps...

But one thing that can be concluded is that if you specifically look for viral particles you may find them, even when standard tests are negative. In this study in half the cases.


Evolution of Antibody Immunity to SARS-CoV-2

https://www.biorxiv.org/content/10.1101/2020.11.03.367391v1.full.pdf

Analysis of intestinal biopsies obtained from 44 asymptomatic individuals 3 months after COVID-19 onset, using immunofluorescence, electron tomography or polymerase chain reaction, revealed persistence of SARS-CoV-2 in the small bowel of 7 out of 14 volunteers. We conclude that the memory B cell response to SARS-CoV-2 evolves between 1.3 and 6.2 months after infection in a manner that is consistent with antigen persistence.

 

[Dolphin]

https://journals.lww.com/neurotoday..._Long_Haulers__Present_with_Neurologic.3.aspx

Hundreds of ‘Long Haulers’ Present with Neurologic Complaints at
Post-COVID-19 Clinics

By Dan Hurley
November 5, 2020

Apart from the patients who present specific neurologic syndromes such as stroke or Guillain-Barré syndrome, Dr. Navis said, “I don't think there's much evidence of widespread damage to or inflammation of the central nervous system from COVID-19. For a lot of the patients, the symptoms seem more consistent with chronic fatigue syndrome. I don't think this is like with HIV, where we saw AIDS dementia.”