Petition against National Competence center for CFS/ME with BPS approach in Norway - anyone can sign

New blog post from petition initiator Nina E. Steinkopf. This time she gives examples of how ME patients are talked about as a group by people with a psychosomatic/BPS approach to ME.
It's quite disheartening..
She invites readers to leave comments with other examples from social media on how ME patients are described.

De rabiate ME-aktivistene
google translation: The raving ME activists

The petition has 5 135 signatures by now.

Original link to petition in Norwegian https://www.underskrift.no/vis/7358/
English translation of petition details and instructions on how to sign here https://melivet.com/2018/08/25/petition-to-help-norwegian-me-patients/

 

Vogt is lobbying for his own work. That he is allowed to pretend he represents patients really highlights how nonsensical their work is. They can't even find actual patients to defend their work, they have to organize it themselves and pass it as representing patient voices. In politics parlance that's astroturfing, passing a lobby group's actions as the legitimate grassroots actions of constituents.

The 100:1 ratio says it all, especially as it's likely none actually had ME.

 

Oh I disagree strongly. It is most definitely the Sharpe scale. Vogt is a mere disciple of Sharpe's galactic-sized inability to see errors in his own judgment.

 

Vogt does not understand that the BPS people are fooling themselves by running unblinded clinical trials.

First they fool themselves by finding a false positive effect.

Then they fool themselves by seeing that the self-reported health changes with therapy that aims to change cognition and concluding that the illness must be somehow caused by cognition.

The possibility that these effects are just biased reporting by patients that are biased to report positive changes by therapy is never considered.

 

@Kalliope

Or others, do we know where this information comes from? It's the one thing not linked?

As the study is not stopped, we know the complaint didn't succseed. The reasoning from the NBHS would be good to know, and possibly and advocatong tool?

And didn't the same happen to the rituximab-trial, or am I misremembering....?

 

But Vogt isn't really working on ME or even functional disorders, even if he has written some opinion pieces about it. That's the wierd thing about him - and several other prominent voices in the norwegian ME-debate. They don't work in the field, even from an BPS- approach.

"The ME-debate" over here, (and that is an actual used expression) is more like any other general debate over issues in the society - it's like discussing poverty, road-work, quality of hospitals etc. Everyone have an opinion, and some even engange primarily in the meta-debate on the debate itself, Kristian Gundersen for instance does that.

Vogts research interest have been in precision medicine, system approch to medicine etc. His papers listed here:

https://www.researchgate.net/profile/Henrik_Vogt

 

New blog post from petition initiator Nina E. Steinkopf.
This time about the support to ME patients from researchers and clinicians. She has collected several quotes, from amongst others @Jonathan Edwards

Fagfolk som støtter ME-pasientene
google translate: Professionals who supports ME patients

Prof. Øystein Fluge at the Clinical Institute at Haukeland University Hospital: "Several of the ME patients we meet are as ill as cancer patients towards the end of their lives." (TV2, 21.10.11)

Prof. em. Jonathan Edwards , dept. of Medicine, University College London is little impressed with Vegard BB Wyller's knowledge:
"I think somebody needs to do a bit of homework from basic medical textbooks"
He also supports a withdrawal of the PACE study, and answers prof. Kristian Gundersen in Aftenposten: "If patients have solid proof that research is bad, I support them."
Edwards also puts LP instructor Live Landmark in place.

The blog post ends with:
The country's top professional body in the field and director of the Competence Service for CFS / ME, Ingrid B. Helland, on the other hand, claims that ME is a "biopsychosocial" disorder and believes that ME patients should receive courses in the Lightning Process .

The petition has 5175 signatures by now

Original link to petition in Norwegian https://www.underskrift.no/vis/7358/
English translation of petition details and instructions on how to sign here https://melivet.com/2018/08/25/petition-to-help-norwegian-me-patients/

 

Then they fool the journalists......

 

Yeah...... :-/ It's not even an interpretion of something she said or something vague like that - it's direct quote from a statement she made about the Smile-study:

https://translate.google.no/transla...te-er-veldig-spennende-resultater/&edit-text=

For years, patients have said (or consoled themselfs) that the only good thing about the competence service is that they have been a bit anonymous and not taken part in the public debate much etc.

 

New blog post from initiator Nina E. Steinkopf where she summarises the reasons behind this petition and previous blogposts.

Underskriftskampanje for å stanse feilbehandling av ME-pasienter har fått stor oppslutning
google translation: Petition to stop malpractice of ME patients has received significant support

She also shares some important quotes:

Director General of Health and Chief Medical Officer of Norway Bjørn Guldvog said about ME patients in 2011 that: " I think it's right to say that we have not developed a good health service for these, and I apologise for that".

Bent Høie (Minister of Health) said in 2014: "- Patients and relatives are just as important as professionals and politicians. No important decisions should be made over the head of patients and relatives. They know where the shoe pinches, and we have to capture that knowledge. »

On the International ME Day, May 12, 2015, Prime Minister Erna Solberg stated that ME patients have been treated poorly by the Norwegian health service over the years. - It's really a scandal. Patients have faced a lack of respect simply because we have lacked knowledge. The worst part is that we have not worked that hard to achieve that knowledge. »

The petition has 5 222 signatures by now.
I think the petition might be close to its end soon, so if you haven't signed already, there's not much time left now to do so.

Original link to petition in Norwegian https://www.underskrift.no/vis/7358/
English translation of petition details and instructions on how to sign here https://melivet.com/2018/08/25/petition-to-help-norwegian-me-patients/

 

6 000 signatures

 

The petition got over 6 100 signatures. That's far more than I'd hoped for and a very strong signal that something is wrong with the national competence service for CFS/ME.

Initiator Nina E. Steinkopf has written an extensive document about the background for this petition. It includes recent biomedical research, general facts about ME, results from governmental assessments of the care given to ME patients, of surveys among patients, assessments from the Norwegian ME Association and other initiatives, background to the GET/CBT-regime, Lightning Process, ME vs. MUS, the one-sidedness of the competence service, previous complaints from patients that's been ignored, promises to ME patients which haven't been kept.

The full text is available at her blog:
ME-pasientenes fortvilte kamp mot skadelig behandling
google translation: ME patients' desperate fight against harmful treatments

This document and the signatures will be delivered to the Ministry of Health and Care Services next week.

 

Article in the regional newspaper Bergens Tidende about the petition.
It is paywalled, but here's a translation from most of the article:

ME-patients revolting against professionals

Is ME in the mind or in the body? That's the core of the debate surrounding the condition at least 5 000 Norwegians suffers from.
Now ME-patients across the country have gathered behind a demand of removing the highest professional milieu for ME. Over 6 300 people have signed the petition where they state that ME is a physiological disease.

Nina E. Steinkopf, who started the petition, says the national competence service for CFS/ME has an erroneous psychosocial understanding of the disease.

- We're not believed, but are being cut off with potentially harmful alternative treatments and quackery. The consequence are many ME patients in deep despair.

- I gradually fell ill during spring 2010 and deteriorated a lot when treated with graded exercise. It was not until I bought treatment with Rituximab at a private clinic I experienced some improvement. For the first time I could take a shower without using a stool. That was a miracle for me.

Where to you get energy to do this health political work?

- I have little energy and must make firm priorities. I've used everything on this petition.

Steinkopf is waiting for a meeting with Minister of Health Bent Høie to deliver the petition and the demands. The Ministry of Health and Care services is for the time being evaluating the competence service. A conclusion is awaited during the first quarter of 2019.

Steinkopf hopes the protest among the patients will make the minister understand that the competence service is on the wrong track.

The name of the competence service says a lot about the debate. ME is a diagnosis based on strict criteria. CFS is a name for different kinds of fatigue.

The competence service for CFS/ME includes both.

That leads to patients with a serious physiological disease being put in the same category as those with psychosomatic illnesses, stress, burnout or depression, according to Steinkopf.

There are about 5 700 Norwegians with ME based on the strictest criteria, but tens of thousands suffer from different kinds of burn out.

Steinkopf feels that the competence service vouch for alternative treatment and recommend graded exercise and cognitive behavioural therapy for the disease. A symptom of the disease is that activity can lead to deterioration.

Last November the Norwegian ME Association withdrew themselves as co organisers of a CFS/ME-conference with a contribution about Lightning Process.

Lightning Process is a form for alternative treatment. The other organisers were the competence service and Norwegian Institute of Public Health.

Another treatment Steinkopf is critical of, is the stress-classes from psychiatrist Bjarte Stubhaug.

In an excessive document, Steinkopf points to researchers with a biomedical approach to the disease. Among others the oncologists at Haukeland university hospital who has tested cancer treatments on ME patients.

Researchers in Bergen have shown deficit in energy metabolism in the cells of ME patients.

Do you think the competence service should move to Bergen?

There are several good candidates to lead the competence service, but I haven't pointed towards anyone specifically. What's important is a new management updated on biomedical research, acknowledging that ME is a physiological disease and that takes ME patients serious.

Terje Rootwelt, leader of the children and adolescent clinic at Oslo university hospital and professor at the university in Oslo answers on behalf of the competence service.
Rootwelt writes in an email that he think it is sad and professionally challenging when patients and carers demand that ME shall be considered as a purely somatic disease.

- A united professional milieu here holds on to that it is correct and important to have a broad bio-psycho-social approach where we are open for the fact that both somatic, psychological and social condition can be of importance for different patients. We do this in all our work, also in other patient groups.

 

If anyone wants to comment on the article and give their support for the petition and Nina, they can do so on Twitter and Facebook here:
https://twitter.com/user/status/1082140692124708867

 

I don't think that's a helpful way of seeing things. Whenever that is viewed as the core issue it's leads to the inevitable and irrelevant conclusion that the functioning of the mind is a part of the functioning of the body, etc, etc.

 

I agree, but I think it’s the journalist who oversimplified here, they don’t seem to realize that they are contributing to the problem by framing it like that. Or they just think that making the conflict more black and white will make it more interesting. Annoying, in any case.

ETA: the petition is about changing the leadership of the center because they refuse to consider biomedical research, not because they include psychological research.

 

I concur - I'd be inclined to frame the issue as:

Is LP / Phil Parker legitimate?

(Because, in this context, ME is not the problem. LP corporate proponents are.)

 

6 500 signatures!!

And you can still sign if you haven't already:
Original link to petition in Norwegian https://www.underskrift.no/vis/7358/
English translation of petition details and instructions on how to sign here https://melivet.com/2018/08/25/petition-to-help-norwegian-me-patients/