News from Scandinavia

Kalliope said:
A letter to the editor from head of department at the children and adolescent's ward at Akershus university hospital. I believe he is prof. Wyller's boss?

He says they've had a productive research environment for CFS led by prof. Wyller, but that the funding to this work has been reduced lately. He blames ME patients for this.

He refers to the Reuter's article and the criticism towards the PACE trial to show how much harassment there is from patients. He also refers to the petition against the National competence service and the research council's allocation to user involved ME research to show how much power the patients have gotten. Prof. Wyller's research project on children and Lightning Process didn't receive funding from the research council's allocation. The funding for Norway's most published ME research milieu is decreasing. Instead research milieus working from a specific theory that ME has physiological causes have received substantial amounts.

Erik Borge Skei - Pasientgrupper sjikanerer ME-forskere og utøver press for å påvirke hvem som får forskningsmidler
google translation: Patient groups harass ME researchers and exert pressure to influence who gets research funding
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Nina E. Steinkopf has written a very good reply:

Skylder på pasienten når forskningen feiler
google translation: Blaming the patient when the research fails

Clinical director at A-hus, Erik Borge Skei writes in Aftenposten that "pressure from patient groups means that one of our reputable research environments does not get the funds to continue" and believes that it will harm the patients.

Skei does not mention that there is a professional conflict in the field. He himself writes that "Norway's most published research environment in the ME field is shrinking." Then one must also assume that most of the Norwegian research funds that have been granted for ME research over the past 15 years, have gone to precisely Vegard BB Wyller's projects.

After 15 years, Wyller's stress theory has not been proven and the patients are still as ill. His research has thus delayed the understanding of Myalgic Encephalopathy (ME).
 
mango said:
MillionsMissing Sweden would like to livestream their events online on May 12. However, in order to get access to sending livestreams on YouTube your channel has to have more than 1000 subscribers. If you would like to help them reach that target, please subscribe here:

https://www.youtube.com/channel/UCoWspDPvlmvf1Ym4AqKC2iQ
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Happy to help, just wondering if it might be easier to stream on FB? No lower limit there, AFAIK.

ETA: And more easily accessible, easier to share etc.
 
rvallee said:
Is it? Given the poverty of data, not a single country has a register so accuracy is very low, how was that determined?

One possibility is that the diagnosis is more commonly being made, which kind of makes sense, but that increase would only be notable in the number of sick leaves being identified as ME, not an increase in the actual number of sick leaves.

But given how common it is to misdiagnose depression, anxiety or other unidentified health problems (without any back-propagation to correct those misdiagnoses) as CFS and saying it's the same as ME, the number of false positives is very high.
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I think it’s hard to know how many are getting diagnosed with CFS when it should be depression in my case it was the other way round and I think this is quite likely for other gradual onset people as well
 
Kalliope said:
Nina E. Steinkopf has written a very good reply:

Skylder på pasienten når forskningen feiler
google translation: Blaming the patient when the research fails

Clinical director at A-hus, Erik Borge Skei writes in Aftenposten that "pressure from patient groups means that one of our reputable research environments does not get the funds to continue" and believes that it will harm the patients.

Skei does not mention that there is a professional conflict in the field. He himself writes that "Norway's most published research environment in the ME field is shrinking." Then one must also assume that most of the Norwegian research funds that have been granted for ME research over the past 15 years, have gone to precisely Vegard BB Wyller's projects.

After 15 years, Wyller's stress theory has not been proven and the patients are still as ill. His research has thus delayed the understanding of Myalgic Encephalopathy (ME).
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And now a Lightning Process-coach has joined the debate

Lightning Process er selvhjelp, ikke behandling
google translation: Lightning Process is self-help, not treatment

Experiences after the course have shown a wide range, from rapid recovery stories from prolonged bed rest, discussed in the media , to less good experiences, often presented on ME blogs. Internal evaluation of several hundred course participants has shown that nine out of ten people attending the course recommend it to others, even one year after participation.

However, there has been some uncertainty regarding the effect of the Lightning Process. It was therefore a joyful day when the first randomized controlled study, the gold standard in research, was published in an internationally recognized scientific journal in January last year.

The study was conducted within the public health service in England and included 100 adolescents with CFS / ME. The results of the study showed the following: Those who attended courses in Lightning Process in addition to receiving specialist treatment had significantly better effect than those who only received specialist treatment. Most importantly, the study showed no serious side effects.

 
Esther12 said:
Sounds like they've failed to understand the problems with the SMILE trial: http://www.virology.ws/2017/12/13/trial-by-error-the-smile-trials-undisclosed-outcomes/
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Oh, I think they do understand the problems. They're just fine with those because it produces the outcome they want.

If those flaws produced an outcome they did not like, they would be screaming about how it invalidates the results, make no mistake about that. Not surprisingly, the flaws always inflate the results in favor of the outcomes they seek. Every. Single. Time. Ideology is blinding.
 
Kalliope said:
The Swedish paediatrician Mats Reimer recently stopped writing for a news site for medicine, Dagens Medicin, and started writing for another site, Dagens Samhälle. It appeared that one of the reasons he stopped writing for Dagens Medicin, was his controversial opinions on ME. He is pro a biopsychosocial approach, PACE and Lightning Process as treatment for ME.

Yesterday he wrote the following in Dagens Samhälle:

Mats Reimer: Vården splittrad i synen på hur ME/CFS ska behandlas
google translation: The health care system is divided on how to treat ME/CFS

No one knows for sure what CFS depends on. No one knows which definition of the condition is most useful. More research is needed, both on biological mechanisms and on psychological. But already today there is actually hope. There are CFS patients who become better or completely healthy after psychotherapy; in Norway, they have gathered in the patient association Recovery Norway and share their stories to give hope to more people.

Today there is a reply from Sten Helmfrid:

Sten Helmfrid: ME/CFS-behandling får inte bygga på dåliga studier
google translation: ME/CFS treatment must not be based on poor studies

The deficiencies in the psychological treatment studies at ME / CFS have been reported to Mats Reimer on many occasions , but he does pose critical questions and continues to propagate for these treatment methods. Patients deserve better.
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Reply from SBU (Swedish Agency for Health Technology Assessment and Assessment of Social Services)

https://www.dagenssamhalle.se/debatt/sbu-reimer-utgar-fran-gamla-mecfs-kriterier-27186

Google Translate, English
 
Kalliope said:
And now a Lightning Process-coach has joined the debate

Lightning Process er selvhjelp, ikke behandling
google translation: Lightning Process is self-help, not treatment

Experiences after the course have shown a wide range, from rapid recovery stories from prolonged bed rest, discussed in the media , to less good experiences, often presented on ME blogs. Internal evaluation of several hundred course participants has shown that nine out of ten people attending the course recommend it to others, even one year after participation.

However, there has been some uncertainty regarding the effect of the Lightning Process. It was therefore a joyful day when the first randomized controlled study, the gold standard in research, was published in an internationally recognized scientific journal in January last year.

The study was conducted within the public health service in England and included 100 adolescents with CFS / ME. The results of the study showed the following: Those who attended courses in Lightning Process in addition to receiving specialist treatment had significantly better effect than those who only received specialist treatment. Most importantly, the study showed no serious side effects.
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Another letter-to-the-editor in the ongoing ME debate in the newspaper Aftenposten. This time from prof. Wyller

Mentale teknikker er nyttig mot ME
google translation Mental techniques are useful for ME

Ten years ago, I made a hypothesis that automatic stress reactions are important for ME, while disorders of the immune system are not so important. Stress reactions involve both hormones, nerves, thoughts, feelings and behaviors - here it is meaningless to distinguish between biology and psychology.

The hypothesis is firmly rooted in modern neuroscience, especially how the brain automatically interprets signals from our surroundings and from the body's interior on the basis of expectations.

...
That mental processes are part of the (not the whole) picture at ME is a good news. This means that mental techniques are likely to be useful treatment.This assumption has proved to be correct. Several studies have documented good effect of cognitive therapy, while the risk of side effects is very low.

The largest of these studies, the British PACE study , has been highly criticized, but an independent review of British health authorities shows that this criticism is essentially unfounded (British Medical Journal, February 7, 2019 ).

The mental training program Lightning Process or LP , which is based on a blend of cognitive methods and other fully recognized psychological techniques, is less well-known in scientific terms, but one study suggests that this method is also safe and can have good effect. LP is often rejected because LP instructors make money from their work, but this is of course no scientific objection to the method. All drugs are also linked to commercial interests.
 
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Kalliope said:
here it is meaningless to distinguish between biology and psychology.
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So it is meaningless to insist that an illness is biopsychosocial?

The whole piece from Wyller reveals his amateurishness as a biomedical scientist. He has the sort of impervious baseless dogma of people who come round to your door trying to persuade you to join their religious sect. For a long time I have withheld judgment about Wyller. I am always ready to be proved wrong. But this is the talk of someone who understands nothing.
 
Wyller said:
The study of the drug rituximab , which inhibits parts of the immune system, shows that this medicine has no effect on ME. The effect actually tended to be somewhat better in those patients who received placebo (renal medicine). This is yet another sign that mental processes (such as expectations) are important to ME, just as in a number of other chronic diseases (such as high blood pressure).
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He really seems utterly clueless. There are two errors here. The first is that one couldn't possibly tell from such a clinical trial whether expectations are determining outcomes, because the procedure was designed to ensure that expectations were the same in both trial groups. The second seems to be a confusion of biased reporting of health with almost magical mind-body effects.

The placebo effect, in the sense of a genuine and significant healing effect triggered by positive expectations and similar psychological factors, was never a thing. It was a myth created by Beecher who jumped to this conclusion without considering that patients can improve merely due to passage of time, may wish to please the doctor, and so on.
 
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Kalliope said:
The mental training program Lightning Process or LP , which is based on a blend of cognitive methods and other fully recognized psychological techniques
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NLP is recognized as quack pseudoscience (and not even going to comment on the Tarot card thing). All these idiots are doing (sorry, duing) is beclowning themselves and broadcasting to the entire world that they are incapable of distinguishing science from total nonsense.

Clearly the standards to get a medical license (or a professorship) are not nearly as high as they ought to be when complete fools are somehow operating without adult supervision.
 
rvallee said:
broadcasting to the entire world that they are incapable of distinguishing science from total nonsense.
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If only that were true. Then everyone would see through them. But we live in the age of goopism.

Science is meaningless, sales pitch is what matters. Wyller knows his audience.

It's getting really hard to tell fact from fiction and no-one is going to fact check--that's why they can pretend that the BMJ article is a defense when it's no such thing. Even if someone miraculously read the article unless they were reading critically they would see that all the boxes were checked and might still come away thinking that all is as he said.

They know this. I think that's why they bother to keep on writing this stuff. Their nightmare is that people of influence and with the relevant skill in parsing information of this sort if they get exposed to it they might have a problem.

For us this is the issue. To get the right people exposed to all the facts. Many of those people had been poisoned against people with ME from the beginning but at least that is now changing.
 
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