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

Kalliope said:
A psychologist who previously worked at the National Center of Excellence for CFS/ME, has recovered from ME by "non-medical"approaches and has written several letters-to-the-editor criticising the Norwegian ME Association for its emphasis on a biomedical approach to ME has now written to a news site for research about the campaign. She strongly opposed this petition.

ME-pasienter er ikke tjent med helsepersonell som står fritt til å synse, mene og tro
google translation: ME patients are not served by healthcare professionals who are free to guess and believe.

We should be happy with a healthcare system that is capable of seeing psyche, soma and social relationships in context (biopsychosocial approach), especially in complex situations.

She also seems to think the negative results in the RituxME trial speaks FOR a BPS approach and that there is little to offer the patients with from a biomedical approach. Those who are open for a more general, wide and "knowledge based" approach have a bigger elbowroom.

There are 2000 who have signed the petition by now.

(Edited for clarity)
Click to expand...
This psychologist has written a new letter to the editor, this time claiming that the petition's criticism of the Competence service is wrong.

She fails to mention that she's been a colleague to Competence service, and she refers to a newly arranged seminar for physiotherapists without mentioning that she represented the patient's voice. This as someone who got well by her own effort (I think with diets and alternative treatments). That's not a representative outcome, but that's obviously the story the Competence service prefers to tell.

Hvorfor ikke heller kjempe for flere stillinger på ME-feltet?
google translation Why not fight for more positions within the ME field?

She seems to think patients are blaming the Competence service for not providing biomarker or treatments, despite that "biomedical research is happening all over the world". But they are criticised for not informing health care personell about the research. And how could they, when they prefer travelling to BPS-conferences instead of Invest in ME and Stanford symposiums?

She says that if ME patients deteriorate after treatments due to low knowledge about ME among health care personell, then of course measures must be taken. But she doesn't seem to understand that the Competence service had contributed to this, by for years recommending GET and CBT as treatments.

And instead of meeting the details of the criticism in a serious way, she thinks patients should rather fight for more staff at the Competence service. God forbid.
 
That Nina Andresen person is _really_ annoying. I can sort of deal with Vogt, Woller, Landmark, Malterud and that gang - you know where they are coming from and what to expect. But this Nina person, has this gift of twisting reality, mixed with the aura of seemingly expertice - and the advantage on the rest of them of beeing a (former) patient.

Of course the solution to the competence service not doing their job is to add more resources... :banghead:

That would be incredible stupid to advocat for - ME is such a small illness, affecting a limited number of people. We can't expect a goverenment body to ever be particulary large. But we can and expect them to do their job.
 
inox said:
That Nina Andresen person is _really_ annoying. I can sort of deal with Vogt, Woller, Landmark, Malterud and that gang - you know where they are coming from and what to expect. But this Nina person, has this gift of twisting reality, mixed with the aura of seemingly expertice - and the advantage on the rest of them of beeing a (former) patient.
Click to expand...

Yup. Doesn’t seem to understand the concept of COI, and misuses her title to be more credible even when outside her own field. Reminds me a bit of Dolores Umbridge.
 
Kalliope said:
This psychologist has written a new letter to the editor, this time claiming that the petition's criticism of the Competence service is wrong.

She fails to mention that she's been a colleague to Competence service, and she refers to a newly arranged seminar for physiotherapists without mentioning that she represented the patient's voice. This as someone who got well by her own effort (I think with diets and alternative treatments). That's not a representative outcome, but that's obviously the story the Competence service prefers to tell.

Hvorfor ikke heller kjempe for flere stillinger på ME-feltet?
google translation Why not fight for more positions within the ME field?

She seems to think patients are blaming the Competence service for not providing biomarker or treatments, despite that "biomedical research is happening all over the world". But they are criticised for not informing health care personell about the research. And how could they, when they prefer travelling to BPS-conferences instead of Invest in ME and Stanford symposiums?

She says that if ME patients deteriorate after treatments due to low knowledge about ME among health care personell, then of course measures must be taken. But she doesn't seem to understand that the Competence service had contributed to this, by for years recommending GET and CBT as treatments.

And instead of meeting the details of the criticism in a serious way, she thinks patients should rather fight for more staff at the Competence service. God forbid.
Click to expand...
New blog post from initiator of the petition, Nina E. Steinkopf which is also an answer to psychologist Nina Andresen's letter to the editor:

Hva vi blir utsatt for
google translation: What we are exposed to

4 612 have signed the petition by now.
 
Another blog post from initiator Nina E. Steinkopf.
She is working very hard on uncovering and documenting problematic aspects with the PBS-establishment in Norway, and she does as good a job as any investigative journalist.

In this blog post she writes about how Lightning Process is pushed on ME patients, supported by the Competence service for CFS/ME.
She explains why there is no valid documentation of its effect, and she exposes the lobbyism from LP-promoters and how they've managed to pave way for an alternative treatment as an acceptable treatment for ME among health care workers in general.

Lightning Process som behandling mot ME?
google translation: Lightning Process as treatment for ME?

The petition has 4 718 signatures by now

(I am tagging you @dave30th in case you'd like to have a look at the google translations of Nina's blogposts before coming to Norway. They give a good and topical summary of the BPS situation in the country)
 
The "patient organisation" Recovery Norge, the one with MD Henrik Vogt and LP-coaches claiming ME is something you can recover from by your own merits, have initiated a counter-petition supporting and praising the Competence service for CFS/ME. Their petition has 51 signatures and has been delivered to the Norwegian Directorate of Health.

The petition against the Competence service for CFS/ME and their biopsychosocial approach to ME have reached 4 746 signatures by now.
 
inox said:
Don't really want to 'like' that, but thank you for informing us @Kalliope . Maybe this they might just end up amplifying the critic, underlining who the only supporters that benefit frim the competance service is....?
Click to expand...
I remember they were 46 members when starting up a year ago. Perhaps this means they've grown with 5 people since then. I thought they were many more. They sure give that impression, that they're talking on behalf of a lot of people.
 
New blogpost from initiator Nina E. Steinkopf. This time about the impossible situation for families with children with ME, when seeking help is defined as symptom causing behaviour.

De ME-syke barna
google translation: The ME-sick children

The parents' situation is that their struggle to get help for the sick child is interpreted as the very cause of the disease. From here the road is short to alert the child welfare authorities and incapacitate the parents. Parents or guardians, therefore, gradually realise that tacit acceptance of malpractice (such as graded activity adjustment) and exhausting follow-up are preferable to the alternative.
https://translate.google.com/transl...vPA77QGznfUA1-GAs3EPwQ8RvToYeO84I27-jPgdoPDD0
There are now 4 775 signatures to the petition
 
The plot thickens..

In her recent blogpost the initiator of this petition, Nina Steinkopf, writes that MD Henrik Vogt (leader of the "patient" organisation Recovery Norge who supports undocumented, alternative treatments for ME and supports the Competence Service for CFS/ME and their biopsychosocial approach to ME) called her on the phone and asked her to change her statement about there being LP-coaches among the first members of his organisation.

But Nina's statement is true. This is documented in their own media launch one year ago in the newspaper Aftenposten where all the 46 members of the organisation signed an open letter demanding that those who have recovered must be listened more to. Among those who signed were 13 LP-coaches, husband/wife to LP-coaches, and another seller of courses to cure ME.

There are also eight LP-coaches among the petition with 50 signatures that Recovery Norge sent to the Directorate of Health as support to the Competence Service for CFS/ME.

Another thing the blog post exposes, is that Henrik Vogt, together with some other doctors, tried to stop Fluge and Mella's trial on cyclophosphamide and ME by asking the Norwegian Board of Health Supervision to revise the ethical approval of the trial.

Blog post: Kompetansetjenesten og Recovery Norge
google translation: The Competence Service and Recovery Norge

I am very impressed with Nina, her bravery and matter-of-factness.
If you haven't already, please sign her petition.

Edited for clarity.
 
Last edited:
Kalliope said:
In her recent blogpost the initiator of this petition, Nina Steinkopf, writes that MD Henrik Vogt (leader of the "patient" organisation Recovery Norge who supports undocumented, alternative treatments for ME and supports the Competence Service for CFS/ME and their biopsychosocial approach to ME) called her on the phone and asked her to change her statement about there being LP-coaches among the first members of his organisation.

But Nina's statement is true. This is documented in their own media launch one year ago in the newspaper Aftenposten where all the 46 members of the organisation signed an open letter demanding that those who have recovered must be listened more to. Among those who signed were 13 LP-coaches, husband/wife to LP-coaches, and another seller of courses to cure ME.

There are also eight LP-coaches among the petition with 50 signatures that Recovery Norge sent to the Directorate of Health as support to the Competence Service for CFS/ME.
Click to expand...
Swedish Sten Helmfrid has debated ME and research (such as the PACE trial) for quite some time on twitter and in Swedish media. He and Henrik Vogt has an exchange on Nina's latest blog post now on twitter.

As not all the tweets are in English, I've translated most of them

Sten Helmfrid:
Nina E. Steinkopf raises concerns about conflicts of interest and lack of transparency in the network Recovery Norway. Many members that actively are lobbying for the Lightning Process turns out to be instructors or coaches (links to Nina's most recent blog post)

Henrik Vogt:
Those who are LP-instructors were not initiators, not among the first members, they are not at the board, they have no particular position in Recovery Norge. As the other members they are people who have undergone great suffering and are now healthy. Show them respect.

Sten Helmfrid:
Henrik, I can't speak about individual people's case history. But I do find anecdotal evidence as non-authentic. SMILE couldn't show any improvement with LP in objective measures, only in self reported physical function and school attendance.

Henrik Vogt:
You can mean so. But this is about untruths/factual mistakes that you have forwarded. I just wanted to make you aware of that.

Sten Helmfrid:
The blog post I link to doesn't discuss who initiated Recovery Norge, but points towards conflicts of interests, for instance among several of this who signed the article in Aftenposten. These are relevant facts for critical readers.

Henrik Vogt:
Oh yes. You are forwarding accusations about lack of transparency. You are in general part of running down the credibility to people who have been seriously ill.

Sten Helmfrid:
I stand by that it is a conflict of interest to be an instructor of LP and at the same time lobby for the method within the frames of a patient organisation. To not account for this close relation during the Consumer Ombudsman's letter (*) and the startup of the network is an example of lack of transparence.

Sten Helmfrid:
The fact that there is a conflict of interest doesn't necessary contain that one can't speak, but the conflicts must be shown. It is up to the reader to decide whether lack of credibility is a problem. You have to presume that critics will point to these conflicts of interests.

(* The Consumer Ombudsman have strict rules about marketing alternative therapies in Norway. It is not allowed for those who are selling alternative therapies to share stories of improvement/recovery. LP-coach Live Landmark (member of Recovery Norge) got a letter from the Consumer Ombudsman about this new rule and deleted all her stories about people improving from LP on her web site and social media. Now Recovery Norge shares the same stories, and Live Landmark can share those stories again, thus avoiding the Consumer Ombudsman's rules because it is not originated from a seller of alternative therapies, but from a "patient organisation". Henrik Vogt doesn't seem to get the problem with this)






https://twitter.com/HenrikVogt/status/1052094299612094464
https://twitter.com/StenHelmfrid/status/1052112562270203904
https://twitter.com/StenHelmfrid/status/1052112657719939072
 
Last edited:
Kalliope said:
The plot thickens..

In her recent blogpost the initiator of this petition, Nina Steinkopf, writes that MD Henrik Vogt (leader of the "patient" organisation Recovery Norge who supports undocumented, alternative treatments for ME and supports the Competence Service for CFS/ME and their biopsychosocial approach to ME) called her on the phone and asked her to change her statement about there being LP-coaches among the first members of his organisation.

But Nina's statement is true. This is documented in their own media launch one year ago in the newspaper Aftenposten where all the 46 members of the organisation signed an open letter demanding that those who have recovered must be listened more to. Among those who signed were 13 LP-coaches, husband/wife to LP-coaches, and another seller of courses to cure ME.

There are also eight LP-coaches among the petition with 50 signatures that Recovery Norge sent to the Directorate of Health as support to the Competence Service for CFS/ME.

Another thing the blog post exposes, is that Henrik Vogt, together with some other doctors, tried to stop Fluge and Mella's trial on cyclophosphamide and ME by asking the Norwegian Board of Health Supervision to revise the ethical approval of the trial.

Blog post: Kompetansetjenesten og Recovery Norge
google translation: The Competence Service and Recovery Norge

I am very impressed with Nina, her bravery and matter-of-factness.
If you haven't already, please sign her petition.

Edited for clarity.
Click to expand...
This blog post has now been translated into English which is easier to read than a google translation. It is so important to bring the lobbying og connections among these people out into the public. Thanks again, Nina for all you do!

About the Recovery network Norway - and what ME patients are up against

An example from the blogpost about this network. The request was about trying to stop Fluge/Mella's CycloME:
One of those who have signed the request is Georg Espolin-Johnson, medical expert in The National Insurance Court/Norwegian Labour and Welfare Administration. He has previously written in the newspaper Aftenposten that «Professor Ola Didrik Saugstad deprives a number of ME patients both of an offered treatment and hope» and in another paper “Today’s Medicine”, he wrote that: «By refusing that complex psychological mechanisms maintain chronic fatigue one risks to put an end to research and development of treatments which can help many patients. »
https://melivet.com/2018/10/17/abou...l2fMqJf56V0QpXgVRDaTYfS-MrgH_mw1TwraCbGpz3VLo
The petition is signed by 4 911 people by now
 
@Kalliope , is there an English-language blog that provides a translation of the petition text, and perhaps takes people step-by-step, via an English translation, through signing it? I think this could help with gaining signatures if it was available.
 
Andy said:
@Kalliope , is there an English-language blog that provides a translation of the petition text, and perhaps takes people step-by-step, via an English translation, through signing it? I think this could help with gaining signatures if it was available.
Click to expand...
Yes there is. I linked to it to the first post in this thread, but it's always useful with repetitions. Will try to keep it in mind from now on :-)
https://melivet.com/2018/08/25/petition-to-help-norwegian-me-patients/
 
You must log in or register to reply here.
Back
Top Bottom