News from Scandinavia

mango said:
Ny forskning visar förändringar i hjärnan hos postcovidpatienter
https://www.tv4play.se/program/nyhetsmorgon/ny-forskning-visar-förändringar-i-hjärnan-hos-postcovidpatienter/20514422
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I've listened to this now. Jonas Bergquist did an excellent job! :thumbup:

(Bad PEM, sorry for all the mistakes.)

He said that there are imaging techniques (such as MRI) that show anatomical changes in the brain, and more selective imaging techniques that indicate inflammation in the brain. His team's research focus is studying the cerebrospinal fluid, which is produced in the middle of the brain and flows down through the brain and along the spinal canal. They are measuring biomarkers in the spinal fluid, and they show neuroinflammation, low-grade inflammation that can arise in the brain after infections like this.

Which means that they are starting to understand what is happening in the brain. It can be a part of the explaination for why some people suffer long-term consequences and what causes the disease.

He says that this is not a new phenomenon. There are texts written more than 100 years ago about various virus outbreaks, where patients have suffered long-term consequences.

You are a ME researcher too, are you surprised by these findings? No, not surprised but happy that things have moved forward this much. There are similarities with ME, which in some cases are caused by EBV infection. There are similarities in both blood and spinal fluid. Both diseases can maybe teach us something about the other disease.

What are the differences between ME and post covid? The infection that triggered them. But the symptoms are very similar. It's maybe a little too soon to say that they are the same, but there are big similarities. And they don't just affect the brain, but many organs in the body. There is a list with more than 200 symptoms than can arise after an infection like this.

Some doctors do not agree that this is a real diagnosis? It's not strange that there has been some skepticism. Before you understand something it's difficult to pinpoint it, and that includes treatment options too. You might be a bit unsure and then maybe also a bit careful to say that "this is a disease" or a syndrome, and so on. But he feels that the tone of the conversation has changed for the better now. We are starting to understand how many people are affected and how long-term and severe the consequences can be for some individuals.

Are there biomarkers in the blood too? Can you see them through a blood test? Depending on what organs are affected, it's more or less easy to see also in the blood. New studies have been published very recently where they can see that inflammation markers (the kind that control our immune system) change, and contrary to what one might have guessed some are lowered rather than increased. They are being pushed down as part of a non-functioning immune system.

Do we know how many people in Sweden have post covid? Very unreliable numbers. Globally there might be around 700-800 million people affected by covid infection. If 10% of them suffer consequences that last for more than 6 months, and if maybe 1% of them will suffer more long-term or chronic issues, then it means an absolutely massive group of patients.

What about treatments? There are symptom relieving treatments, depending on what your worst symptoms are. What symptoms are they, usually? Brain fog, neurocognitive issues, lung damage, GI issues, cardiovascular regulation problems. You can get some pharmacological support. There is still no cure, but interesting studies for example about drugs that dissolve micro clots that are impeding the bloodflow in the blood vessels, which might be a possible treatment option. Studies about antivirals show that if you can push down inactive virus particles (that exist in a resting state in our nerves, for examples), if you can decrease their activity it can partially lessen the inflammation too.

He says it's too early to tell what the solution will be. He thinks it probably won't be one solution for everyone, but rather a combination and a custom solution for each individual.

The presenter asks him how far away the solution might be? He doesn't answer, but starts talking about the good news from earlier this week, the government commissioning the National Board of Health and Welfare and the SBU etc.

So, the skepticism has been left behind? He hopes so. "There is much more we need to understand, but I believe that we need to do that with an open mind."
 
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I was wondering where Jonas disappeared to over the last 1-2 years, or so?

There's a strong convergence of neurological-inflammation that seems really really strong now, especially after watching Nath interviews.
Really hoping for no permanent damage. Is there anything that can lower this type of inflammation? Is the inflammation serving a purpose/fighting something?
 
Swedish GP/activist/pwLC Lisa Norén was live tweeting (in Swedish) while watching SFAM's livestreamed webinar on long covid today.

Thread here:
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https://threadreaderapp.com/thread/1651542396398706691.html

sfam.se said:
SFAM – The Swedish Association of General Practice

SFAM is the professional and scientific college of general practitioners (family physicians) in Sweden, a non-profit organisation with about 2000 members. SFAM is affiliated to the Swedish Society of Medicine (Svenska Läkaresällskapet) as well as the Swedish Medical Association (Läkarförbundet). Main areas of interest for SFAM are continuing professional development, training of future GPs, assessment of competence, quality improvement and research in general practice/family medicine.

https://sfam.se/foreningen/organisation/in-english/
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Recovery Norge announces on their Facebook page that Henrik Vogt MD is quitting as leader of the organisation. Vogt founded the organisation in 2017 together with Thomas Overvik, who is also leaving the board. New leader is Hilde Søndrol who has been in the media several times with a recovery story from ME by Lightning Process.
 
I missed this, but a "young voices" opinion from a young doctor in Norway (who is a phd student at the same hospital as Wyller) concluded that with MUPS diagnosis the treatment that is left (since there is nothing wrong) is to "reinterpret" the symptoms:

Non-specific symptoms – and uncertain doctors

Today another doctor wrote a reply saying we should use more money on finding out what is wrong with MUPS patients, as that would be more cost effective than leaving these patients disabled:

Ill with symptoms but no explanation

I really liked their final paragraphs:
"Instead of rejecting the fact that symptoms and ailments are real, the healthcare system should spend far more resources on finding explanations and treatments. The state's cost of sickness benefits, employment verification and disability benefits was close to NOK 200 billion in 2022 – more than the costs of the specialist health service of NOK 183 billion. We can then assume that patients with MUPS diagnoses have benefits from Nav of approximately NOK 140 billion, and in addition there are significant costs in examining the patients to rule out the diseases we understand.

THINK NEW! If 70 per cent of all disabled people suffer from MUPS diagnoses, this is about 250,000 people. In addition, there are those on sick leave, those on work clearance or those who, despite their symptoms and ailments, bravely do their best to stay at work.

The costs for society, and for everyone who suffers from MUPS diagnoses, are so great that there is reason to think again. We do not believe that "reinterpreting" symptoms and complaints is sufficient treatment."
 
belbyr said:
Really hoping for no permanent damage. Is there anything that can lower this type of inflammation? Is the inflammation serving a purpose/fighting something?
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My understanding of the evidence so far is that there is no inflammation. The only study that looked as if it might show something new was the Nakatomi PET scans and that didn't replicate. The overwhelming body of evidence from straightforward MRI, blood test and so on is that there is NO inflammation. Bergquist's own area of CSF analysis has as far as I know shown nothing consistently interpretable.

Bergquist was always keen on being positive about findings. Now he even seems to be positive about findings that go the wrong way. I don't think this helps. Nor does it help suggesting that treating clots or viruses has shown something reliable.

But the good news is that permanent damage is not likely to be a problem where there is no damage even now. There ay be damage of a non-inflammatory sort, but that is a different line of investigation.
 
Some physician said:
We can then assume that patients with MUPS diagnoses have benefits from Nav of approximately NOK 140 billion, and in addition there are significant costs in examining the patients to rule out the diseases we understand.
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Obviously not, it's doubtful that the real numbers paid are even 10% of this, not even sure about 1%. The whole point of this construct is to deny those costs. But it's silly to only count direct healthcare expenses, and that is the real problem. As otherwise simply denying medical care is the least expensive option in every case, by way of very creative and shady accounting.

Also it's not as if solving the things medicine doesn't understand would eliminate disability. Most disabilities are beyond medicine's abilities to treat, whether they understand them or not. That's a weird argument, frankly.

There are existing accounting models for this, the value of a healthy person at some age. This is the real cost, the sum total of the various aspects of their economic activity, as workers or employees, as consumers and more. There are people whose job it is to do that, mostly for insurance companies. We know those values, they are estimates but they are far more accurate than any model that only looks at direct healthcare expenses.

This is not an issue strictly for physicians, in fact most of the consequences don't have anything to do with their day job or skills. This is simply a consequence of the monoculture approach to health, one that only sees what happens at clinics and hospitals, and is absurdly ignorant of almost everything else.

This isn't something that can be left to doctors, it's too important for this and this isn't even their job. There's an entire profession that seems to be missing from healthcare, frankly. One that would allow MDs to focus only on biology and leave the rest to people who have useful skills for those different categories of problems, especially with a strong emphasis on stakeholders, because ultimately no one understands disability and illness better than the patients. Physicians understand disease, illness isn't their thing.
 
I was thinking about adding a caveat about the numbers :rofl:
rvallee said:
Obviously not, it's doubtful that the real numbers paid are even 10% of this, not even sure about 1%. The whole point of this construct is to deny those costs. But it's silly to only count direct healthcare expenses, and that is the real problem. As otherwise simply denying medical care is the least expensive option in every case, by way of very creative and shady accounting.

Also it's not as if solving the things medicine doesn't understand would eliminate disability. Most disabilities are beyond medicine's abilities to treat, whether they understand them or not. That's a weird argument, frankly.

There are existing accounting models for this, the value of a healthy person at some age. This is the real cost, the sum total of the various aspects of their economic activity, as workers or employees, as consumers and more. There are people whose job it is to do that, mostly for insurance companies. We know those values, they are estimates but they are far more accurate than any model that only looks at direct healthcare expenses.

This is not an issue strictly for physicians, in fact most of the consequences don't have anything to do with their day job or skills. This is simply a consequence of the monoculture approach to health, one that only sees what happens at clinics and hospitals, and is absurdly ignorant of almost everything else.

This isn't something that can be left to doctors, it's too important for this and this isn't even their job. There's an entire profession that seems to be missing from healthcare, frankly. One that would allow MDs to focus only on biology and leave the rest to people who have useful skills for those different categories of problems, especially with a strong emphasis on stakeholders, because ultimately no one understands disability and illness better than the patients. Physicians understand disease, illness isn't their thing.
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Nyhetsmorgon. ME-sjuka Cecilia om böckernas betydelse: ”Äventyr från soffan”, 10 min 54 sek

https://www.tv4play.se/program/nyhe...kernas-betydelse-äventyr-från-soffan/20562242
Auto-translate said:
ME patient Cecilia on the importance of books: "Adventures from the sofa", 10 min 54 secs

When Cecilia Blomqvist became ill with ME, she and her family had to find ways to make the best of their new life. One way to deal with the disease was to dive into the world of literature together.
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25 year old Aurora is suffering from severe ME. She is placed in a health institution in Oslo where she is deteriorating and not receiving proper care. She has been kept there against her will for 15 months. Another young severe ME sufferer, Emilie Brandshaug has written an excellent opinion piece where she urges the Minister of Health to step up and help Aurora. Emilie is living in a neighbour municipality, where she receives assistance at home instead of an institution. Emilie reminds the Minister that the Government decided 25 years ago that no young person should have to live in an institution against their will.

NRK: Gi hjelp nå!
google translation: Give help now!
 
Kalliope said:
25 year old Aurora is suffering from severe ME. She is placed in a health institution in Oslo where she is deteriorating and not receiving proper care. She has been kept there against her will for 15 months. Another young severe ME sufferer, Emilie Brandshaug has written an excellent opinion piece where she urges the Minister of Health to step up and help Aurora. Emilie is living in a neighbour municipality, where she receives assistance at home instead of an institution. Emilie reminds the Minister that the Government decided 25 years ago that no young person should have to live in an institution against their will.

NRK: Gi hjelp nå!
google translation: Give help now!
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:cry::broken_heart:
 
24 year old Maria is suffering from severe ME. For four years she was not able to take a shower or see her siblings. Now she is posting TikTok videos about her life. A health researcher says social media can be useful when informing about health and the general secretary of the Norwegian ME Association says Maria is brave and that this is increasing awareness of ME.

Maria says: With a life like mine it can at times feel a bit meaningless. The feedback I have received has provided more meaning again to my life.

TV2 Deler sykdommen på TikTok: - Følte meg levende død
google translate: Shares about the illness on TikTok - Felt like living dead
 
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