MrMagoo
Senior Member (Voting Rights)
Oh. So illness is a moral failing after all. Le sigh.
DecodeME in the media
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John Mac
Senior Member (Voting Rights)
Decoding ME: Big Stakes Genetics Study Puts ME/CFS on Firm Biological Foundation - Health Rising
The DecodeME study puts ME/CFS on a firm biological foundation by highlighting genes that play a prominent role in the brain, the immune system and metabolism.
www.healthrising.org
Decoding ME: Big Stakes Genetics Study Puts ME/CFS on Firm Biological Foundation
Simon M
Senior Member (Voting Rights)
This starts off brilliantly and cover the GWAS itself well, right up to the 8 genetic signals. At which point it veers off course.Decoding ME: Big Stakes Genetics Study Puts ME/CFS on Firm Biological Foundation - Health Rising
The DecodeME study puts ME/CFS on a firm biological foundation by highlighting genes that play a prominent role in the brain, the immune system and metabolism.www.healthrising.org
Decoding ME: Big Stakes Genetics Study Puts ME/CFS on Firm Biological Foundation
The blog ignores the analysis identifying the most likely ggene candidates and puts a lot of emphasis on associations between lother genetic findings the regions identified, inc metablosim. Bu that logic, we could throw in depression, yet it does not map to the same ME/CFS signal.
BrokenBeaktheBrave
Established Member
Copied from the Preprint - Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration thread
"Health Minister Nina Warken (CDU) and Research Minister Dorothee Bär (CSU) spoke a few weeks ago of ‘joint impetus’ and emphasised the importance of the issue. Research into long Covid is therefore desired by the government, but funding for drug development is still lacking. ‘The industry should pay for that,’ was the response from the ministry to Scheibenbogen's application for funds to test a drug. But in practice, companies only get involved once the basic mechanisms of a disease are understood. And that is precisely why basic research is needed."
"Without government-funded basic research, hardly any pharmaceutical company will enter drug development."
"‘Before researchers in pharmaceutical companies can develop drugs to treat a disease, the disease processes must be understood at the molecular level,’ confirms Matthias Meergans from the Association of Research-Based Pharmaceutical Companies. This is the task of academic research – and it depends on public funding. ‘Only once molecular targets have been identified can pharmaceutical companies engage in larger-scale collaborations to develop therapies.’"
Various excerpts from a German article today (although quotes below are behind a paywall):
"Health Minister Nina Warken (CDU) and Research Minister Dorothee Bär (CSU) spoke a few weeks ago of ‘joint impetus’ and emphasised the importance of the issue. Research into long Covid is therefore desired by the government, but funding for drug development is still lacking. ‘The industry should pay for that,’ was the response from the ministry to Scheibenbogen's application for funds to test a drug. But in practice, companies only get involved once the basic mechanisms of a disease are understood. And that is precisely why basic research is needed."
"Without government-funded basic research, hardly any pharmaceutical company will enter drug development."
"‘Before researchers in pharmaceutical companies can develop drugs to treat a disease, the disease processes must be understood at the molecular level,’ confirms Matthias Meergans from the Association of Research-Based Pharmaceutical Companies. This is the task of academic research – and it depends on public funding. ‘Only once molecular targets have been identified can pharmaceutical companies engage in larger-scale collaborations to develop therapies.’"
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Kalliope
Senior Member (Voting Rights)
Finally some coverage from Norway as well!
First one is from the research news site forskning.no with journalist Ingrid Spilde who has written several great and thorough ME research articles before as well.
Gigantisk studie så på genene til ME-syke - dette fant de
Google translation and quotes
Gigantic study looked at the genes of ME sufferers - this is what they found
– This shows that there is something biologically hereditary that makes you vulnerable to developing ME, says molecular biologist Marte Kathrine Viken at Oslo University Hospital (OUS), who has herself researched ME and genes.
She has met the researchers behind DecodeMe, but never collaborated with them on research.
However, Viken warns that the new results cannot be used to make diagnoses or prove that someone has ME.
“However, the results are the basis for further research,” she says.
...
– There are many genes in the eight regions, and we have more knowledge about some of them than others.
– It is somewhat typical for such whole-genome studies to highlight the genes that are most likely linked to the disease.
– But here we must be sober.
Viken says that her own study also pointed to genes related to the immune system and that these findings are consistent with what is now emerging in DecodeME.
But it is important to delve deeper into all the genes found in the eight regions, without being too attached to any particular hypothesis. Perhaps it will turn out that genes other than those previously thought are of greatest importance.
To find real answers, researchers need to map the eight areas in detail. Viken hopes that more research groups will eventually delve deeper into the data that the DecodeME
First one is from the research news site forskning.no with journalist Ingrid Spilde who has written several great and thorough ME research articles before as well.
Gigantisk studie så på genene til ME-syke - dette fant de
Google translation and quotes
Gigantic study looked at the genes of ME sufferers - this is what they found
– This shows that there is something biologically hereditary that makes you vulnerable to developing ME, says molecular biologist Marte Kathrine Viken at Oslo University Hospital (OUS), who has herself researched ME and genes.
She has met the researchers behind DecodeMe, but never collaborated with them on research.
However, Viken warns that the new results cannot be used to make diagnoses or prove that someone has ME.
“However, the results are the basis for further research,” she says.
...
– There are many genes in the eight regions, and we have more knowledge about some of them than others.
– It is somewhat typical for such whole-genome studies to highlight the genes that are most likely linked to the disease.
– But here we must be sober.
Viken says that her own study also pointed to genes related to the immune system and that these findings are consistent with what is now emerging in DecodeME.
But it is important to delve deeper into all the genes found in the eight regions, without being too attached to any particular hypothesis. Perhaps it will turn out that genes other than those previously thought are of greatest importance.
To find real answers, researchers need to map the eight areas in detail. Viken hopes that more research groups will eventually delve deeper into the data that the DecodeME
Kalliope
Senior Member (Voting Rights)
The second article on DecodeME is from a large tabloid newspaper VG who has interviewed professor Karl Johan Tronstad (part of the Fluge/Mella team), professor Vegard Bruun Wyller (Norway's Wessely) and Trude Schei from the Norwegian ME Association. The article is paywalled, but here are links and some quotes.
VG: Nye funn om ME: Bør fjerne enhver tvil
New findings about ME: Should remove any doubts
Professor Tronstad:
– The findings should remove any doubt that ME is a real biological disease that needs to be taken more seriously. Patients often receive little help from the health system and the Norwegian Labour and Welfare Administration, largely because the diagnosis is not considered a real disease.
– These genes point directly to mechanisms that both we and others have already done a lot of research on, which is very good. It supports that the research field is on the right track towards finding treatments for patients.
– Hopefully, more researchers will also be attracted to this field, preferably specialists in specific genes and mechanisms.
...
Professor Wyller:
– It has long been known that there is a certain genetic vulnerability to developing CFS/ME. This is the case with almost all diseases. This new study links the vulnerability to the nervous system and the immune system, which is not surprising. Many other findings also suggest that these organ systems are involved.
....
– Do you think these findings could lead to better diagnosis or treatment in the future?
– No. As mentioned, the gene markers were also found in a great many healthy people, and are therefore not specific to CFS/ME.
...
Finally, he adds that patients with the diagnosis may feel that they are not taken seriously.
– Sometimes it is probably about the healthcare system struggling to deal with conditions that cannot be grouped as “physical” or “mental”. CFS/ME must be understood in a bio-psycho-social perspective, where both body and mind play a role in the development of the disease and in getting well, the professor concludes.
....
Schei from the Norwegian ME Association:
– The study provides indications of things that may be treatable, but much more research is needed before we get new, real treatments, she adds.
– A changed view of ME as a serious, chronic illness will have a lot to say about how ME sufferers are met in society, and that in turn will mean an incredible deal for quality of life, she continues.
VG: Nye funn om ME: Bør fjerne enhver tvil
New findings about ME: Should remove any doubts
Professor Tronstad:
– The findings should remove any doubt that ME is a real biological disease that needs to be taken more seriously. Patients often receive little help from the health system and the Norwegian Labour and Welfare Administration, largely because the diagnosis is not considered a real disease.
– These genes point directly to mechanisms that both we and others have already done a lot of research on, which is very good. It supports that the research field is on the right track towards finding treatments for patients.
– Hopefully, more researchers will also be attracted to this field, preferably specialists in specific genes and mechanisms.
...
Professor Wyller:
– It has long been known that there is a certain genetic vulnerability to developing CFS/ME. This is the case with almost all diseases. This new study links the vulnerability to the nervous system and the immune system, which is not surprising. Many other findings also suggest that these organ systems are involved.
....
– Do you think these findings could lead to better diagnosis or treatment in the future?
– No. As mentioned, the gene markers were also found in a great many healthy people, and are therefore not specific to CFS/ME.
...
Finally, he adds that patients with the diagnosis may feel that they are not taken seriously.
– Sometimes it is probably about the healthcare system struggling to deal with conditions that cannot be grouped as “physical” or “mental”. CFS/ME must be understood in a bio-psycho-social perspective, where both body and mind play a role in the development of the disease and in getting well, the professor concludes.
....
Schei from the Norwegian ME Association:
– The study provides indications of things that may be treatable, but much more research is needed before we get new, real treatments, she adds.
– A changed view of ME as a serious, chronic illness will have a lot to say about how ME sufferers are met in society, and that in turn will mean an incredible deal for quality of life, she continues.
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I wonder what mechinisms he was referring to here.
A new line of attack is emerging...brain and nervous system equals psychosomatic. Frustrating but predicable.
Are they seriously that scientifically illiterate or are they just frighteningly okay with brazenly lying to the public?
John Mac
Senior Member (Voting Rights)
Genetic Study Offers Possible Insight into ME/CFS - The Ehlers Danlos Society
Myalgic encephalomyelitis (ME), also known as CFS (chronic fatigue syndrome), is a complex and poorly understood condition. It has limited management options and remains underfunded in research and healthcare. Many
www.ehlers-danlos.com
hotblack
Senior Member (Voting Rights)
I’m finding understanding the science and statistics of things like GWAS studies far from immediately intuitive so I can understand people getting it wrong. What I can’t understand is how confidently people speak on it or how little curiosity they have it trying to understand it. How did they ever learn if they assumed they knew better at every new idea or concept?
Utsikt
Senior Member (Voting Rights)
Wyller being clueless as always. I think it’s pretty clear that he supports a dualist view of the world. Might as well starr talking about souls instead of the mind. It fits with his divine insight..
Simon M
Senior Member (Voting Rights)
Re molecular biologist Marte Kathrine Viken at Oslo University Hospital (OUS), who has herself researched ME and genes.
Re Prof Tronsdat
Prof `Wyller
(Of course, the variants showed up in both cases and controls – this is inevitable, because they are common genetic differences in the population. That's at the core of all GWAS studies. It's the different genetic signals that provide biological clues).
That sounds very sensible
Re Prof Tronsdat
I wasn’t aware that we were making any progress towards treatment. The immune system and the nervous system are very broad areas and we really need to identify very specific pathology to make progress with drug treatments.
Prof `Wyller
Oh dear. The point of the paper is that these genetic signals showed up in ME/CFS , but not in controls.
(Of course, the variants showed up in both cases and controls – this is inevitable, because they are common genetic differences in the population. That's at the core of all GWAS studies. It's the different genetic signals that provide biological clues).
Perhaps the most important thing is that they did not show any genetic link to anxiety, depression or any other psychological condition – Which would be expected if the psychosocial theory was right.
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I believe Tronstadt is part of Fluge and Mella's team so I assume he feels the immune system links suggested support their Daratumumab etc trials in some way.
I tried to watch his recent talk on the mechanisms he (and I assume F&M) currently believe underlie ME/CFS but couldn't follow it very well.
Is it the specific individual signals or the overall pattern of them that is different?
Kalliope
Senior Member (Voting Rights)
Yes, I think you are right. The article continues with:
– Hopefully, more researchers will also be attracted to this field, preferably specialists in specific genes and mechanisms.
In Bergen and Oslo, immune-directed treatment is currently being investigated as a possibility, based on a hypothesis that ME may be a type of autoimmune disease, which may be consistent with the new gene findings, he adds.
rvallee
Senior Member (Voting Rights)
Clueless? Or malicious? Hard to say. The medical equivalent of "I'm not a bigot but [hugely bigoted tirade]".
Simon M
Senior Member (Voting Rights)
If that's what they believe, it would help to spell it out in the context of why they think DecodeME supports their current work on drugs.
Each specific signal is important, a finding point pointing to biology. And for each of these, compared with controls, there is no signal in controls. P< 10^-8 is the statistical threshold marking how different this finding is in PwME compared with controls.
Some of the fine things (the ones indicated at the moment) are supportive of a role for autoimmunity. But I don't think they support any particular drug trials. There isn't enough detail there to know what Prof Tronstad and colleaguesare thinking. Autoimmunity is a pretty big area.
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Sasha
Senior Member (Voting Rights)
Do we know what that would be if it wasn't Bonferroni-corrected?
Hoopoe
Senior Member (Voting Rights)
Just brilliant. An "expert" that believes GWAS don't lead to better diagnostics and treatments.
They reported the raw p-values.
In GWAS, they don't exactly use Bonferroni. It's a convention in GWAS to limit to SNPs with a p-value less than 5x10-8.
Revisiting the genome-wide significance threshold for common variant GWAS, 2021
Utsikt
Senior Member (Voting Rights)
Maybe they are going by their own experience of not amounting to anything ever despite their best efforts, so they can’t conceive of a reality in which others are able to make progress with the same overall information.