News from Scandinavia

[Kalliope]

I can understand that Fluge and Mella have wanted to keep a low profile, and I’m grateful for the excellent work they do, but at some point I think you have a duty to speak up when you see the abuse someone are going through.

They could have cut through all the noise and firmly said that we need to stop with the unfounded theories and speculations, and to stop treating patients based on nothing, and that we need to do the basic research first. Acted like the grown ups in the room, really.

I recall they were more active in the public debate during the first years they worked on ME. But I guess they soon realised it took us nowhere. I too wish they were more visible in the media and am so grateful every time they appear, but it's like fighting windmills dealing with so much prejudice and the psychosomatics. In the long run the best use of their competence and time is perhaps exactly what they are doing concentrating on their research and trials.

 

[Utsikt]

I recall they were more active in the public debate during the first years they worked on ME. But I guess they soon realised it took us nowhere. I too wish they were more visible in the media and am so grateful every time they appear, but it's like fighting windmills dealing with so much prejudice and the psychosomatics. In the long run the best use of their competence and time is perhaps exactly what they are doing concentrating on their research and trials.

They have struggled massively to get funding, partially because Wyller & Co have taken a lot of it, and partly because of the perception of ME/CFS in the medical establishment. You’d think they might have benefitted from trying to turn the perception?

Tjenesten og MEg have also shown that it’s possible to participate without receiving too much direct public fire from the BPS lobby. And they are calling the lobby and the systems sadistic, violent abusers.

 

[Kalliope]

But they have tried. They have been in the media, to the Parliament, talked to the health authorities etc etc. It led to no changes in a system that doesn't want to change.
In order to persuade the medical establishment they need scientific proof. And that's what they're working on.

 

[Utsikt]

But they have tried. They have been in the media, to the Parliament, talked to the health authorities etc etc. It led to no changes in a system that doesn't want to change.
In order to persuade the medical establishment they need scientific proof. And that's what they're working on.

They have proof that the others are wrong about their treatments and that their disease models are unfounded. That’s the core issue here, not that we don’t know what ME/CFS actually is caused by. Quite the opposite, acknowledging what we do not know would make it crystal clear to everyone that we need funding and research.

Currently, people either think that we do know (it’s psychosomatic and can be treated accordingly) - so there is no need for funding or biomedical research, or that it’s made up entirely - so there is still no need.

 

[rvallee]

I can understand that Fluge and Mella have wanted to keep a low profile, and I’m grateful for the excellent work they do, but at some point I think you have a duty to speak up when you see the abuse someone are going through.

They could have cut through all the noise and firmly said that we need to stop with the unfounded theories and speculations, and to stop treating patients based on nothing, and that we need to do the basic research first. Acted like the grown ups in the room, really.

Only court jesters ever had a job of telling hard truths, especially to powerful people. And even then it's probably sanitized how many of them ended up being mysteriously replaced.

Telling lies is how to get ahead in life. Even in medicine, it turns out. It's all about selling them the right way. Reminding people they screwed up big time is a great way of getting them to double down indefinitely. Also even in medicine. Because nothing is truly ever 'sacred', no matter how many paper 'duties' and 'oaths' they may be cosplaying.

 

[Hutan]

The journal of the Swedish medical Association has a great opinion piece on the harms of classifying and treating ME/CFS and Long Covid as functional disorders. The opinion piece is a reply to a previous opinion piece promoting this model.

This opinion piece is written by Sten Helmfrid, Kersting Heiling, Jonas Bergquist, Anders Rosén, Per Julin, Bo Christer Bertilson, Per Sjögren, Judith Bruchfield and Lisa Norén. They are clinicians, researchers and/or patient representatives.

Just wanted to acknowledge this article posted upthread. As per the foregoing discussion, it takes courage to take on established views and stand with people with ME/CFS. Articles like this in medical journals and magazines are probably an effective way to change the narrative. Thanks to the authors for the good article.

– But personally, I believe that further research results must be awaited before any agreement can be reached. As long as the disease is not understood better, it is easy to assert different views on the disease. Because the discussion has been heated and brings little new, we have kept a low profile and worked to better understand the disease mechanisms and conduct clinical studies to find effective treatment.

– It is still a disease with an extremely high level of suffering and long-term disability, he says.

And another bouquet to Mella. I appreciate the caution and the lack of hype from his and his team.

I think the article and Mella's comment together have the messages we need to focus on. It's true that we don't yet know what is causing ME/CFS. Those who promote biological certainties can cause harm just as the psychosomatic proponents do. But, we do need society to acknowledge the level of suffering and understand that suffering is greatly increased when people with ME/CFS are treated within a psychosomatic paradigm.

 

[Utsikt]

I think the article and Mella's comment together have the messages we need to focus on. It's true that we don't yet know what is causing ME/CFS. Those who promote biological certainties can cause harm just as the psychosomatic proponents do. But, we do need society to acknowledge the level of suffering and understand that suffering is greatly increased when people with ME/CFS are treated within a psychosomatic paradigm.

Absolutely. But who’s going to get that message across when none of the reputable biomed researchers are willing to publicly and directly address the false narratives in the channels where they are being presented? Edit: Tuller is the only one that consistently and openly challenges the narrative in a coherent way.

Surely it would benefit them to get the government and funding bodies to understand that there is a massive unmet need and immense suffering.

And maybe even equally importantly to get the associations to stop making it harder to get taken seriously through making shaky claims.

 

[Hutan]

But who’s going to get that message across when none of the reputable biomed researchers are willing to publicly and directly address the false narratives in the channels where they are being presented?

We are getting off-topic for the thread, but
I think I have heard most ME/CFS biomed researchers address the problems with the psychosomatic paradigm at some time or other. In fact, while I've had problems with the details of a lot of biomed research, I think on average the effort of ME/CFS biomed researchers in trying to combat false BPS narratives has been good. It's not their core business, but they, generally, do try.

Ron Davis, Nancy Klimas, Todd Davenport, the Griffiths University team - I can remember them all vigorously and frequently rejecting BPS ideas. Professor Tate in my country fronts up every year for an annual newspaper article that says that the disease is a medical issue and he taught a session with medical students on that topic for years. I don't think the efforts of researchers on this are always perfect and we could probably help them be more effective, but, yeah, they do try.