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General ME-related news from Scandinavia

Kalliope

Senior Member
Messages
367
Location
Norway
One more answer to prof. Saugstad. This time from two neurologists (they actually work at the same university hospital as Fluge&Mella)

ME er ikke en betennelse i hjernen
google translation: ME is not an inflammation of the brain

- .. he uses his medical authority to suppress persons with life experience associated with chronic fatigue syndrome / ME, who wish that this experience should be used by people with this illness.

- It is a reality that many people with this type of illness have the opportunity to get better by their own efforts.
The ME-debate in the newspaper Aftenposten continues with yet another contribution. This time from a senior doctor called Morten Nissen Melsom. It is a new name for me, and I am glad to see more health care workers join the ME-debate and support the research and the patients. Apparently he works with lung diseases, but from this letter-to-the-editor he seems pretty well updated on ME too.

ME kan ikke kureres som psykisk sykdom
google translate: ME can not be cured as a mental illness

- You can't make the mistake to declare someone well just because medical progress hasn't gotten far enough yet.
 

Cheshire

Senior Member
Messages
1,129
The ME-debate in the newspaper Aftenposten continues with yet another contribution. This time from a senior doctor called Morten Nissen Melsom. It is a new name for me, and I am glad to see more health care workers join the ME-debate and support the research and the patients. Apparently he works with lung diseases, but from this letter-to-the-editor he seems pretty well updated on ME too.

ME kan ikke kureres som psykisk sykdom
google translate: ME can not be cured as a mental illness

- You can't make the mistake to declare someone well just because medical progress hasn't gotten far enough yet.

Great answer:

It is worth remembering that the clinical picture at ME may remind you of what is seen by, for example, hypothyroidism (low metabolism). There was no diagnostic test for hypothyroidism until the hormone was found tyrosine for approx. 100 years ago. Before that time, these patients were often perceived as late and giddal - and fat. Today, no-one would seriously suggest allowing psychologists to treat hypothyroidism. Hypothyroidism can now be diagnosed by finding too low thyroxine in blood tests.
 

Kalliope

Senior Member
Messages
367
Location
Norway
The ME-debate in the newspaper Aftenposten continues with yet another contribution.
Yet another reply in the ME-debate in the newspaper Aftenposten. This time a second letter-to-the-editor from professor Ola Didrik Saugstad where he responds to the criticism from professor Wyller and three other doctors with a psychosomatic approach to ME.

ME er en alvorlig, fysisk, kronisk og kompleks multisystemsykdom
google translate ME is a serious, physical, chronic and complex multi system disease

He sums up the debate and points towards the IOM-report, the PACE-trial (mentions the special issue on PACE from Journal of Health Psychology), the SMILE-trial, new research and the patient community.

- Wyller characterizes international biomedical research as misleading and outdated.This research has gathered headway, and many findings are threatening to the psychosomatic position Wyller represents.Wyller has built his academic career on a paradigm that quickly loses ground.For the ME-patients, this development gives hope for the future.
 
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mango

Senior Member
Messages
905
Excellent article in the Swedish newspaper DT today :)

https://www.dt.se/logga-in/26-arige...sjukdomen-me-cfs-min-kondition-existerar-inte

Don't miss the 0:35 second long video on their Facebook page:
https://www.facebook.com/dtnyheter/videos/1485942044776794/

Google translation
26-year-old Andreas lives with the chronic disease ME / CFS - "My fitness does not exist"

In September, Andreas Sillanpää from Vikmanshyttan was diagnosed with ME / CFS, a neurological disease involving chronic fatigue, and a number of other symptoms.

But the path to diagnosis has not been easy. It has been worse than the disease itself. Andreas sits with a coffee cup in the kitchen of his parents, the home he rarely leaves. Perhaps the caffeine can kick in soon after another sleepless night.

For DT, he tells about the difficult journey that began during an icehockey practice session seven years ago.

"I began to experience difficulties with distance assessment during the matches. In connection with that, I also began to feel very wilted and tired.

The opticians could not find fault with him but at a visit to the health center, the doctor could determine hypothyroid -- malfunction of the thyroid gland. Medicine was inserted. High doses were tested as well as low doses, but Andreas did not get better.

"It was so bad that I was no longer able to continue with hockey, I was very weak.

....
(edited for copyright)

https://www.dt.se/logga-in/26-arige...sjukdomen-me-cfs-min-kondition-existerar-inte
 
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deleder2k

Senior Member
Messages
1,129
A very bad article in Aftenposten today.

"Misinformation about ME may scare patients away from documented treatment"

https://translate.google.no/transla...tert-behandling--Vegard-Bruun-Bratholm-Wyller

Wyller has written three articles now where he praises CBT. He even used the one article in Journal of Health psychology which was written by Chalder, White and others to prove that PACE had not been torn apart. He didn't tell how. He does not say anything about the lack of effect. And he doesn't say that patients don't improve on objective measures.

If someone knows a PhD/MD that wants to write back to him please do tell me. I can translate back to Norwegian. The debate has been ongoing for a month now. Norwegian biggest newspaper. I wouldn't say our view has prevailed, at least not now after this latest chronicle. I think a PhD from UK/US could make a major impact on the debate.
 

deleder2k

Senior Member
Messages
1,129
I've heard from a source that they're looking at publishing the rituximab study before the cyclo study. I have not been able to verify it yet, but it sounds plausible. If the rituximab study is positive, then publishing cyclo afterwards would get much more attention.

That's all I know. I'll update if I am able to confirm it.
 
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ivorin

Senior Member
Messages
152
I've heard from a source that they're looking at publishing the rituximab study before the cyclo study. I have not been able to verify it yet, but it sounds plausible. If they rituximab study is positive then publishing cyclo afterwards would get much more attention.

That's all I know. I'll update if I am able to confirm it.
Does this mean we will wait for both 'till next year?
 

BurnA

Senior Member
Messages
2,087
If they rituximab study is positive then publishing cyclo afterwards would get much more attention.

That's all I know. I'll update if I am able to confirm it.
This does make sense.

If Cyclome comes first, its 'just' another unblinded trial with low n.
If RituxME shows positive results, CycloME becomes a trial showing another possible treatment option and avenue for further research, from the same researchers who brought you the first trial which showed a positive outcome.