Wyller: Incorrect information about CFS (ME-debate in journal for Norwegian psychologists)

[Kalliope]

Before Christmas, the Journal of the Norwegian Psychological Association had two wonderful texts about ME. One was about a family bravely talking about their loss of trust in the health care system after the child authorities several times had looked into their situation. The other text was from a psychologist with long experience with adolescents with ME, acknowledging the young adults as the real experts when it comes to ME.

Seems this has infuriated prof. Wyller, so today the Journal published a response from him and a student in psychology.

Feilinformasjon om kronisk utmattelsessyndrom

google translation: Incorrect information about chronic fatigue syndrome

They conclude:

1. Cognitive behavioral therapy is the only form of treatment that has shown a positive effect on CFS / ME. On the other hand, this is a robust discovery, reproduced in several major studies in adults and adolescents, and also with positive effects on objective goals such as school participation (see, among others, White, Goldsmith, Johnson, et al., 2011 and Nijhof, Bleijenberg , Uiterwaal, Kimpen & van der Putte, 2012). No adverse effects of such treatment have been detected (Dougall, Johnson, Goldsmith, et al., 2014), despite what is often argued. We therefore believe that all patients with CFS / ME should be offered cognitive behavioral therapy.

2. A number of cross-sectional studies show differences in different biological systems (inflammation processes, hormone levels, autonomic nervous activity) in CFS / ME patients and healthy controls, but the differences are generally very modest, and there is an obvious lack of association between biological changes and patient symptoms. Additionally, such group differences do not say much about causal relationships. Often the differences can be explained by other factors, such as activity level and diet differences.

3. The long-term prognosis at CFS / ME is relatively good, especially in adolescents. A majority becomes clearly better over time, and many become completely healthy (see Norris, Collin, Tilling, et al., 2017). Having a solid perception of individual patient prognosis should obviously be avoided - both with CFS / ME and other diseases. However, entering hope is an obvious task for health professionals. We therefore encourage professionals to familiarize themselves with the newly established Network Recovery Norway, which communicates stories from people who have been completely fresh by CFS / ME.

 

[Alvin]

Funny how "scientists" are interested in lies over science....

 

[Hoopoe]

My impression is that this "recovery network" exists to promote the Lightning Process with "recovery stories". Because direct advertisement is now prohibited by law.

 

[Esther12]

I wonder how the co-author is related to him?

He talks about a contradiction in his piece, but surely his position also fall foul of it? If one recognises the potential problems with bias in information from patient self-reports, why would you then ignore that in the context of nonblnded trials?

It can be difficult to do a close reading of things via google translate, and maybe there were problems with the pieces he is responding to, but this piece seems very weak.

"The long-term forecast at CFS / ME is relatively good, especially in adolescents. A majority becomes clearly better over time, and many become completely healthy (see Norris, Collin, Tilling, et al., 2017). Having a solid perception of individual patient prognosis should obviously be avoided - both with CFS / ME and other diseases. However, entering hope is an obvious task for health professionals. We therefore encourage professionals to familiarize themselves with the newly established Network Recovery Norway, which communicates stories from people who have been completely fresh by CFS / ME."

So the only reference to support "the long-term forecast at CFS / ME is relatively good" is a paper on adolescents (who were never even assessed in person for CFS)?

LOL at how he moves from saying "Professionals manage objective, research-based knowledge" to promoting the Recovery Network, which actively seeks out and attempts to promote anecdotes only from patients who report recovering with some sort of psychosocial intervention. Wyller is such a joke.

 

[Sean]

Wyller is such a joke.

I would use words like despicable fraud and cruel beyond belief.

 

[Esther12]

I'd edited before posting Sean! When I'm feeling sharp enough I try to think 'is there anything in there which if taken out of context, could be used against us'. It does mean I can come across as rather mild.

 

[Kalliope]

I wonder how the co-author is related to him?

I wonder if it could be his daughter?
EDIT: It is his wife - I got confused as she's presented as a student.

BTW, Wyller and his wife had a text yesterday in Psykologiskno (Scandinavian Psychology - open-access journal) about highly sensitive people.

Høysensitive kan ha nytte av psykologisk behandling
Google translation: Highly sensitive can benefit from psychological treatment
ME is not mentioned but it does say
Highly sensitive people are at increased risk of various health problems, says Wyller. They have more frequent symptoms of anxiety and depression, but also bodily discomfort, such as chronic pain.

... and I wouldn't put it past them to apply that to ME-patients.

I remember even Naviaux talking about ME-patients in the lecture given at the Stanford symposium last year as a special kind of group - very intelligent, gifted etc. All very flattering, but how does he know that the patients he has met are representative for the whole patient group? And can he not see how problematic it is to describe a whole patient group as having the same personality?

 

[Kalliope]

LOL at how he moves from saying "Professionals manage objective, research-based knowledge" to promoting the Recovery Network, which actively seeks out and attempts to promote anecdotes only from patients who report recovering with some sort of psychosocial intervention.

Amen!

And what planet does he live on when he can state:
The field has long been dominated by unilateral biomedical thinking

 

[Denise]

So "Recovery Network" is limited to people who have had CBT/LP/similar.
How do they assess what patients had before the "treatment"?
What is considered recovery?

The hype about so many patients being highly gifted, sensitive, motivated, Type A, etc. doesn't take into account that it is very likely that to get diagnosed properly (not Fukuda/Oxford,etc) one has to either have a great support system that helps get the patient to the right healthcare professionals or one has to persevere relentlessly (motivation?) to get an accurate diagnosis.
The estimates of people not diagnosed (84-90%) could easily encompass those who don't have sufficient support and those who are unable to relentlessly persevere to get an accurate diagnosis.



It might help to point people in the direction of these two recent pieces:
The Failure of Clinical Guidance for People with ME
and
Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT

 

[Esther12]

I had this other annoying 2015 piece from Wyller open in another window, so thought I'd post it here in case it's of interest.

http://tidsskriftet.no/en/2015/12/c...tis-pathophysiology-diagnosis-and-treatment-0

 

[Kalliope]

Here is another reply in the ongoing debate at The Journal of the Norwegian Psychological Association. It is written by a psychologist and ME-patient and gives a good description of why this is a difficult debate. She starts with the prejudice she had towards ME-patients, until she developed ME herself and then met health care workers with the same prejudice.

Tidsskrift for norsk psykologforening: Vi - de krenkbare
google translation: We - the offended

What causes frustration is that suffering is considered a self-repairable psychosocial stress condition. This again entails classical psychological defense mechanisms such as defense, attack and resignation - and this makes the competence communities easily confirmed and reinforced the image they have from the patient group. It all becomes a self-fulfilling prophecy: our experiences are invalidated and we despair, rage, threaten. We are violated - and we become vulnerable.

At the time, multiple sclerosis was referred to as "faker's disease", until he discovered brain damage through MRI investigations. Similarly, I think we are facing a similar paradigm shift when it comes to ME. But the shift requires more money for research, and that, for example, the Canada criteria make it possible to distinguish between ME sick and other fatigue states. There should also be established a new competence environment for ME, this time a biologically based environment.