Forskning.no: Cancer medicine didn't work for ME

[Kalliope]

The Norwegian news site about research, Forskning.no, has written an article about RituxME.
They have interviewed Øystein Fluge and team member Karl Johan Tronstad.

They have also interviewed the leader of the national competence center for CFS/ME (known for their biopsychosocial approach to ME). She points out that patients in both groups in the trial experienced an improvement and says being part of a study in itself has a positive effect. She wants more research on psychological approaches on ME patients defined by the Canadian criteria.

Forskning.no: Norsk studie: Kreftmedisin virket ikke mot ME
google translation: Norwegian study: Cancer medicine didn't work for ME

Fluge sees ME research from his point of view as a cancer researcher. The contrasts between the research fields on cancer and ME could hardly be greater, he believes.

- At the major cancer conferences in the US, there are 40,000 participants and almost infinite with resources and research will. Within treatment, there are clinical pathways and hospital wards.

- But in the ME field there is almost nothing. At the conferences there are perhaps 50 researchers. The understanding of the disease is 30 years behind and many patients are left to themselves.

- It is thought-provoking to see patients who have been in bed for several years.Resourceful people who fail to eat or talk anymore.

- But some ME patients eventually recover. Some get completely healthy. And this indicates that this is reversible. Then I think: This must be something one can find out.

He would like to join in and try just that.

- The patients deserve that we try a little more, he says.

 

[Peter]

We knew the BPS-people (included Helland & co) would try to take advantage of a the failed Rituxme-study, that is of no surprise. But it is quite astonishing that they kind of isolate this, almost like there is nothing interesting going on in the rest of the world, no other significant clues, data and results? But seems that is the approach, not really taking part and into consideration what is going on beyond the borders.

Helland also reveals another quite scary thing, when she indirectly acknowledge that what she labels ME-patients, can be different type of patients meeting different criteria. That is exactly the problem and the point that these people can’t get they’re heads around. I find it frightening naive that someone actually use the failure of rituxme (null-result) as some kind of “evidence” for any other explanation of causation or so.

Always nice to read the researchers in Bergen, modest and polite. The beauty of science plugging silently on, data speaking.

 

[Rick Sanchez]

lol.. Wasn't one of the conclusions by Fluge and Mella how problematic it was to rely on subjective outcome measures?

Yet somehow the study is now being used by BPSers as evidence that the patients in both groups had real improvement thus showing that psychology actually has an effect?

 

[rvallee]

The Norwegian news site about research, Forskning.no, has written an article about RituxME.
They have interviewed Øystein Fluge and team member Karl Johan Tronstad.

They have also interviewed the leader of the national competence center for CFS/ME (known for their biopsychosocial approach to ME). She points out that patients in both groups in the trial experienced an improvement and says being part of a study in itself has a positive effect. She wants more research on psychological approaches on ME patients defined by the Canadian criteria.

Forskning.no: Norsk studie: Kreftmedisin virket ikke mot ME
google translation: Norwegian study: Cancer medicine didn't work for ME

Fluge sees ME research from his point of view as a cancer researcher. The contrasts between the research fields on cancer and ME could hardly be greater, he believes.

- At the major cancer conferences in the US, there are 40,000 participants and almost infinite with resources and research will. Within treatment, there are clinical pathways and hospital wards.

- But in the ME field there is almost nothing. At the conferences there are perhaps 50 researchers. The understanding of the disease is 30 years behind and many patients are left to themselves.

- It is thought-provoking to see patients who have been in bed for several years.Resourceful people who fail to eat or talk anymore.

- But some ME patients eventually recover. Some get completely healthy. And this indicates that this is reversible. Then I think: This must be something one can find out.

He would like to join in and try just that.

- The patients deserve that we try a little more, he says.

It also showed a placebo effect. Had it been a psychosocial trial it would have reported a successful outcome because of it, which invalidates psychosocial research because you can get that unsustained placebo/questionnaire effect from anything since they never actually measure something objective.

I really like it when they point out that it failed, they just don't realize it also invalidates their ideology but promote the fact nonetheless. Ironically, this gives the field of psychology an incredibly useful and fascinating look into the Dunning-Kruger effect, from some of their own who actually know about it and yet are unable to prevent it in themselves.

 

[Esther12]

Ingrid B. Helland at the National Competence Service for ME has no connection to the study. She also believes that research is solid.

- This is a good and important study, she says.

One weakness in the survey is that it is based on self-reporting from the patients.

But there is no reason to doubt the negative results, both Helland and Tronstad believe.

Helland, on the other hand, points out that more patients in both groups actually experienced an improvement.

- It confirms something we have seen before - that being part of a study in itself has a positive effect. The fact that someone cares and is in a fixed scheme does well for most people. Positive expectations of impact are also important, she says, and continues:

- That this is taken to income for ME being a mental illness, it gets to pull it too far. But we know that the psychic affects the body and the immune system, and vice versa.

Helland wants broad research on ME.

So Helland seems to recognise the problem with self-report outcomes (here at least... she made no mention on it when praising SMILE!), but goes on to suggest that results show that being in a trial has a positive effect?

Is it an accurate translation for "more patients in both groups actually experienced an improvement"? More than what?

 

[Kalliope]

Is it an accurate translation for "more patients in both groups actually experienced an improvement"? More than what?

ah, that was badly translated. It says: "Helland, on the other hand, points out that several patients in both groups actually experienced an improvement"

 

[Esther12]

ah, that was badly translated. It says: "Helland, on the other hand, points out that several patients in both groups actually experienced an improvement"

Thanks. That's more accurate, but makes it even clearer that Helland has no justification for claiming that being part of a trail is useful as some patients can improve outside of trials.

 

[MeSci]

Source Science Nordic

Date: June 10, 2019

Author: Ingrid Nuse

URL:
http://sciencenordic.com/cancer-drug-doesn’t-work-chronic-fatigue

Cancer drug doesn't work for chronic fatigue
--------------------------------------------
Cancer drug rituximab has no effect on chronic fatigue syndrome (ME/CFS), according to a Norwegian study.

'Now we can put this to rest,' says researcher Oystein Fluge. He is referring to the idea that the cancer drug rituximab, which affects certain cells of the immune system, was thought to be helpful in treating chronic fatigue syndrome (ME/CFS). Recently, Fluge and his colleagues published the results of the latest study of this drug in Annals of Internal Medicine. It marked the end of a nearly 15-year-long research story that began with great hope and enthusiasm, but ended in disappointment.

Now, the researchers have to look for other possibilities. 'You have to respect the results you get and adjust course,' says Fluge, who still believes it would be interesting to do more research on the immune system's role in ME/CFS.

More at link

 

[Perrier]

The Norwegian news site about research, Forskning.no, has written an article about RituxME.
They have interviewed Øystein Fluge and team member Karl Johan Tronstad.

They have also interviewed the leader of the national competence center for CFS/ME (known for their biopsychosocial approach to ME). She points out that patients in both groups in the trial experienced an improvement and says being part of a study in itself has a positive effect. She wants more research on psychological approaches on ME patients defined by the Canadian criteria.

Forskning.no: Norsk studie: Kreftmedisin virket ikke mot ME
google translation: Norwegian study: Cancer medicine didn't work for ME

Fluge sees ME research from his point of view as a cancer researcher. The contrasts between the research fields on cancer and ME could hardly be greater, he believes.

- At the major cancer conferences in the US, there are 40,000 participants and almost infinite with resources and research will. Within treatment, there are clinical pathways and hospital wards.

- But in the ME field there is almost nothing. At the conferences there are perhaps 50 researchers. The understanding of the disease is 30 years behind and many patients are left to themselves.

- It is thought-provoking to see patients who have been in bed for several years.Resourceful people who fail to eat or talk anymore.

- But some ME patients eventually recover. Some get completely healthy. And this indicates that this is reversible. Then I think: This must be something one can find out.

He would like to join in and try just that.

- The patients deserve that we try a little more, he says.

The comparison to cancer is really striking. It's probably like this with other diseases too. Even literary conferences generate more participants than the ME ones! But most worrisome is where they state that the disease is 30 years behind. What does this mean in practical terms for all those who very sick?