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

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This morning on the telly they talked about a new Swedish study by Karolinska Institutet and Karolinska University Hospital on long covid patients. Judith Bruchfeld and Mikael Björnson were interviewed.

The main message seems to be that there are clear differences between the two groups that were studied. The first group was people who have been hospitalised for covid-19 (mostly men, older, higher BMI etc), and the second group was people with long covid who haven't been hospitalised (mostly women, younger, lower BMI, more active/fit compared to the other group before onset, previously healthy).

The second group (not hospitalised) are doing worse on the long-term follow-up tests like the 6-minute walking test, muscle strength on inhalation etc. Their functional ability has been even more negatively impacted compared to the previously hospitalised patients'.

Bruchfelt believes the long term effects is an umbrella concept, where patients can have different disease mechanisms. It's possible that the mechanisms for the two groups are completely different. She believes it's important to find out why this is, on a molecular level, in order to develop better treatments and hopefully eventually a cure.

What can be done to help them? Bruchfeld says that diagnosis is important, for example POTS and autonomic dysfunction because there are many different treatments available, as well as individualised rehab. Also dysfunctional breathing, because there is physical therapy that can help a lot. It's important that the patients are assessed by specialists.

https://www.tv4.se/klipp/va/13359160/ny-svensk-studie-om-postcovid
 
mango said:
This morning on the telly they talked about a new Swedish study by Karolinska Institutet and Karolinska University Hospital on long covid patients. Judith Bruchfeld and Mikael Björnson were interviewed.

The main message seems to be that there are clear differences between the two groups that were studied. The first group was people who have been hospitalised for covid-19 (mostly men, older, higher BMI etc), and the second group was people with long covid who haven't been hospitalised (mostly women, younger, lower BMI, more active/fit compared to the other group before onset, previously healthy).

The second group (not hospitalised) are doing worse on the long-term follow-up tests like the 6-minute walking test, muscle strength on inhalation etc. Their functional ability has been even more negatively impacted compared to the previously hospitalised patients'.

Bruchfelt believes the long term effects is an umbrella concept, where patients can have different disease mechanisms. It's possible that the mechanisms for the two groups are completely different. She believes it's important to find out why this is, on a molecular level, in order to develop better treatments and hopefully eventually a cure.

What can be done to help them? Bruchfeld says that diagnosis is important, for example POTS and autonomic dysfunction because there are many different treatments available, as well as individualised rehab. Also dysfunctional breathing, because there is physical therapy that can help a lot. It's important that the patients are assessed by specialists.

https://www.tv4.se/klipp/va/13359160/ny-svensk-studie-om-postcovid
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This looks very interesting. But seems the study isn't published yet? I can't find it.. Do you know the title?
 
Kalliope said:
This looks very interesting. But seems the study isn't published yet? I can't find it.. Do you know the title?
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No, sorry I haven't been able to find any info besides this tv interview. The ki.se website seems to be down today, I haven't been able to access it to check if they have published anything in their news section. Haven't found anything on dagensmedicin.se either, nor on any of the other news websites (that don't use a paywall).
 
rvallee said:


"Chronic fatigue". Ugh. Still complete basic vocabulary fail.
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I can't access the abstract. Quickly looking at the slides, I can't see any reference to "chronic fatigue syndrome".

The article says this which does sound like it is referring to a diagnosis of chronic fatigue syndrome, but I would like something more definite:

"In fact, researchers are finding that a diagnosis of chronic fatigue -- with all that implies -- appears inevitable for many."
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I found this interesting:
At week 24, the fraction indicating they suffered from severe fatigue stood at 79% -- with 15 of the 35 who said they had mild or no fatigue at week 11 now saying it was severe, even as 31 of the 178 with initially severe fatigue reported it had become milder or disappeared.
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Långtidssjukas kamp för att orka med vardagen – ”som ett dåligt batteri”
https://www.aftonbladet.se/nyheter/...-att-orka-med-vardagen--som-ett-daligt-batter

Auto-translate said:
Long-term sufferers' struggle to cope with everyday life - "like a bad battery"

Cecilia, 40, had a fever every day for months

New studies bring hope to the thousands of people suffering from long covid in Sweden.

But for many sufferers, everyday life is still a struggle to cope.

- 'I need my power wheelchair whenever I'm out of the house,' says Cecilia Chrapkowska, 40, who has been ill since March 2020.

Cecilia Chrapkowska, 40, has previously told Aftonbladet about how she couldn't walk more than 20 metres without getting chest pains.

- If I stand up for more than five or ten minutes, I get dizzy, she explained in May this year.

Cecilia came down with covid-19 in March 2020. For months she had a fever of over 38 degrees, for three months between 39 and 40 every day.

She was also diagnosed with POTS (postural orthostatic tachycardia syndrome), which prevents the body from regulating blood flow when standing up, leading to fainting, constant headaches and memory problems.

Can exercise for seven minutes

Before the pandemic, Cecilia Chrapkowska worked as a paediatrician, alongside her research and doctorate.

But since she was diagnosed with long covid, life has been very different - although with small improvements since last spring.

- The good thing is that I've started working 25% again and can exercise seven minutes every other day. But that's all I can handle right now. If I increase too quickly, I'll get a high fever again and be bedridden," she says.

- It's all about learning where my limits are and how much I need to rest. But if I hadn't rested as much as I already do, I think I would have been much more unstable.

Female - a risk factor

Cecilia therefore does much of her daily tasks with the help of a power wheelchair.

- I use it whenever I'm away from home. If I don't use it, I quickly get chest pains and breathlessness.

But for Cecilia, who is a doctor herself and has devoted herself to research, new studies on long covid give her hope for the future.

- There have been several interesting studies recently, including one on why it's so difficult for those of us with long covid to exercise. They found that an abnormally high proportion of oxygen was still in the blood when it returned to the heart, and had not been absorbed by the muscles.

She also cites a new report from Karolinska University Hospital and Karolinska Institutet showing that people with long covid who have not been hosipitalised scored worse on physical tests than hospitalised patients with life-threatening pneumonia. [...]
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Åsa Kristoferson Hedlund, the Swedish Covid Association, is interviewed too.

Google Translate, English
 
Opinion piece on a Swedish website/magazine for healthcare professionals.

”Lyssna på patienter med långtidscovid”
https://www.dagensmedicin.se/opinion/debatt/lyssna-pa-patienter-med-langtidscovid/
Auto-translate said:
"Listen to patients with long covid

[...] This spring, there has been a relatively loud debate about long covid, ranging from what it really is to what type of rehabilitation is effective. Recently, the National Board of Health and Welfare's proposals for support to health care professionals and policy makers on post-covid were released. Unfortunately, once again, patients have been overlooked as co-creators in both their care and research. Although the patient is at the centre, the role is clearly that of a recipient and not co-creator of their own care.

Argument 1. Allowing the patient to be an equal partner in their care, so-called person-centred care, has been shown to have very good effects on both patient health and other important outcomes [...]

Argument 2. Involving patients in research means that research is carried out with patients as partners, rather than to, about or for them. In Sweden, we are lagging behind in this respect compared to countries such as the UK and Canada, which have had patients as co-researchers for some time. By having patients as co-researchers, research priorities can be adapted to patients' needs, but patients can and should also contribute to discussions and planning of methodology and study design. The Swedish Research Council's report Research Overview 2019 - Clinical Therapeutic Research highlights patient involvement as an important part of health research. However, the author questions whether researchers really value participants' effort and contribution. As covid-19 is a new disease, there are currently few studies and a gap in knowledge about care and rehabilitation. This requires research to learn more about what we need to do. If this research is to be relevant and useful, patients with long-term covid should be part of the whole research process, from the ground up. [...]

Listen to the patient. Scientific evidence and knowledge on the treatment of long-term covid symptoms is lacking. Patients' stories about how they experience their symptoms are an essential basis for gaining an awareness of the patient's own knowledge, motivations, resources and will in a co-created health plan. [...]

Birgit Heckemann, PhD, nurse, researcher at the Centre for Person-Centred Care at the University of Gothenburg, GPCC

Mari Lundberg, professor, physiotherapist, researcher and steering group member at GPCC, head of Sophiahemmet University

Håkan Hedman, Honorary Doctor of Medicine, President of the Swedish Kidney Association, member of the GPCC Steering Committee
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Google Translate, English
 
mango said:
Opinion piece on a Swedish website/magazine for healthcare professionals.

”Lyssna på patienter med långtidscovid”
https://www.dagensmedicin.se/opinion/debatt/lyssna-pa-patienter-med-langtidscovid/

Google Translate, English
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Long Covid has truly revealed the sham of "learning the lessons of the AIDS crisis". The main lesson of the AIDS crisis has been "nothing about us without us". Not only has this lesson not been learned, it's effectively worse this time around, with zero understanding of the overlap every time it comes up. Not only has it not happened since anywhere, in our case it's basically taken a weaponized form, where patient involvement is attacked as a negative, as unacceptable.

There is zero interest within medicine to work with patients and frankly at this point I think that this is by far the biggest obstacle to progress in medicine going back several decades, even more significant than mere difficulty. This is basically artificial difficulty and it's stuck everyone at the same level for decades, in some cases going back a full century.

Because the one thing worse than not learning lessons from a major crisis is to genuinely believe, or at least proclaim, that you have, then show blatantly how nothing at all was learned, which makes it impossible to actually learn since what more is there to learn if you've already "learned" it so well that it's celebrated as an event?

Medicine is basically facing a crisis of its own making, having largely stopped progressing, outside of cutting edge technology, not because of technical or scientific issues, but over culture and politics, including actual failure of basic vocabulary and absurd failures like category errors and false attribution. And this is almost all because of this pervasive refusal to consider the patient experience as useful, a necessary source of information that is simply dismissed without a valid reason other than mere tradition and culture.

In a sense this is similar the failure of dealing with climate change. We have the technology and the industrial capacity for it, but it's not happening because of culture and politics.
 
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