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

Kalliope said:
A newssite for research has written an article about the petition. I don't know if the title has a good translation, but hope the meaning comes through.

Forskningno: Trist at ME-aktivistene går i skyttergravene
google translation: Sad that the ME activists goes into the trenches

Senior doctor for the national center of excellence for CFS/ME says the claims in the petition is incorrect. She further says that they believe CFS/ME probably is linked to both body and soul and that isn't possible to strictly distinguish between psyche and soma. Their service should try to cover everyone, both those who say ME is a mental illness and those who say it is physiological. The fact that they get critiqued from both sides of the debate is hopefully an indication that they are able to keep the balance.

The petition has 2150 signatures by now.
Click to expand...
The initiator of the petition, Nina Steinkopf, has written a letter to the editor based on this article and how the senior doctor at the National center of excellence for CFS/ME dismissed any criticism.

Det er ikke uventet at lederen for Nasjonal Kompetansetjeneste for CFS/ME avviser kritikken
google translation: It is not unexpected that the head of the National center of excellence for CFS/ME dismisses any criticism

She writes that the National center of excellence for CFS/ME still maintains a biopsychosocial approach to ME, with emphasis on psychosocial. The senior doctor from the center has previously stated that she believes ME is probably linked to both body and soul. Nina Steinkopf reminds us that "soul" is a religious term and doesn't give much confidence when used by researchers and health care personell.

She links to an article by a psychologist comparing Lightning Process with how religious leaders have used suggestive techniques in order to "cure" homosexuality. She reminds that the leader of the National center of excellence for CFS/ME thinks the SMILE-study is "exciting" and that it is important for ME patients to get both Lightning Process and help from professionals.

The method is defined as alternative treatment by the Norwegian Directorate of Health, The Consumer Ombudsman and the National Research Center in Complementary and Alternative Medicine. The latter has sendt warnings about Lightning Process to health authorities due to reports from patients of deterioration.

She questions whether the National center of excellence for CFS/ME is correct when claiming to manoeuvre through research in the field, including biomedical research. According to Invest in ME, the senior doctor did not attend the conference this year and is no longer invited to the colloquiums.

She also points out that the senior doctor still supports the PACE trial and the Cochrane review, even though they've been taken apart.

With these views, the doctor contributes to maintain the level of conflict and the desperate situation for the patients. The National center of excellence for CFS/ME does more harm than good.

The petition has now 2960 signatures
 
Kalliope said:
I like that the autocorrect at this forum doesn't accept the word biopsychosocial. The word always gets a red line underneath and I couldn't agree more. :D
Click to expand...
I think it's actually your browsers dictionary that is determining that. Ctrl+click should give you the option to add the word to the dictionary.
 
Invest in ME has written a comprehensive, engaging, thorough text with background information and support for the petition.

Invest in ME: Accountability and Action II

This Norwegian National Competence Services has had an opportunity to treat ME properly and has been given resources to do just that.
It is based in a country that has seen some of the most interesting biomedical research initiatives being set up and funded to find the cause of, and treatments for this disease – objectives that match exactly those of Invest in ME Research.
Yet, in recent times, we have seen and heard of criticism of its treatment of ME and the direction in which it has been heading.
...

A competence service such as the National Competence Services must not try to cover everyone – it needs to treat ME if that is the basis for its existence.
The main concern for any patient is to treat the underlying disease.
If comorbidities exist then they need to be dealt with in their own right. To do otherwise is allowing lives to be wasted, to be sacrificed just for career ambitions and vested interests.
...

As in other countries, and with other national organisations, the Norwegian National Competence Services has had ample time to understand the true nature of ME.
They have been invited to our biomedical research colloquia and attended some of our public conferences, in the past – both of which have consistently displayed the world’s latest biomedical research into ME.

If, despite this, nothing has been learnt then we will not waste further time and resources attempting to help.

The National Competence Services'' approach has been criticised forcefully by ME patients and carers.
That should be enough for a review to be taken.
The views of businesses, self-interest groups and careerists count for nothing in this debate.
 
Kalliope said:
The initiator of the petition, Nina Steinkopf, has written a letter to the editor based on this article and how the senior doctor at the National center of excellence for CFS/ME dismissed any criticism.

Det er ikke uventet at lederen for Nasjonal Kompetansetjeneste for CFS/ME avviser kritikken
google translation: It is not unexpected that the head of the National center of excellence for CFS/ME dismisses any criticism

She writes that the National center of excellence for CFS/ME still maintains a biopsychosocial approach to ME, with emphasis on psychosocial. The senior doctor from the center has previously stated that she believes ME is probably linked to both body and soul. Nina Steinkopf reminds us that "soul" is a religious term and doesn't give much confidence when used by researchers and health care personell.

She links to an article by a psychologist comparing Lightning Process with how religious leaders have used suggestive techniques in order to "cure" homosexuality. She reminds that the leader of the National center of excellence for CFS/ME thinks the SMILE-study is "exciting" and that it is important for ME patients to get both Lightning Process and help from professionals.

The method is defined as alternative treatment by the Norwegian Directorate of Health, The Consumer Ombudsman and the National Research Center in Complementary and Alternative Medicine. The latter has sendt warnings about Lightning Process to health authorities due to reports from patients of deterioration.

She questions whether the National center of excellence for CFS/ME is correct when claiming to manoeuvre through research in the field, including biomedical research. According to Invest in ME, the senior doctor did not attend the conference this year and is no longer invited to the colloquiums.

She also points out that the senior doctor still supports the PACE trial and the Cochrane review, even though they've been taken apart.

With these views, the doctor contributes to maintain the level of conflict and the desperate situation for the patients. The National center of excellence for CFS/ME does more harm than good.

The petition has now 2960 signatures
Click to expand...
Nice to see that the website has tweeted the initiator of this petition, Nina Steinkopf's letter-to-the-editor.
 
New blogpost from the initiator of the petition.

Ikke min kompetansetjeneste
google translation: Not my Competence Service

She leads with a story about an ME patient's consultation with a senior doctor at the regional hospital, department for infectious diseases. The doctor said there was no point in taking blood samples and spent 10 minutes talking about Lightning Process (LP). This was in 2011. The doctor is still recommending LP to ME patients.

She further writes about how the Competence Service, (also they enthusiastic of LP) are responsible for the information on ME in the health care system. And how that information creates a consensus, which makes it even more difficult for patients trying to get the message through that the BPS-model is not a good approach for this disease.

What if we had a Competence Service which instead was clear about ME being a physiological disease?

3 123 have signed the petition by now
 
New blog post from initiator Nina E. Steinkopf. This time about the importance of strict diagnostic criteria.

Ikke min sykdom!
google translation: Not my illness!

The competence service has the defining power and chooses to mix ME with mental disorders. Therefore, it must be legitimate to ask if everyone with ME have the correct diagnosis.
A study by Haukeland in 2016 indicates that as many as 82% of those referenced for investigation appear to have no ME but other disorders.
This indicates that doctors do not have enough knowledge about ME. Lack of knowledge is the reason why many are likely to be misdiagnosed and referenced on the wrong basis. It may also explain why some "ME patients" get better of, for instance, Lightning Process .

...

The Competence Service, our highest professional body, wipes out the ME diagnosis and can thus argue that ME patients are mentally ill. That is why ME patients are being mistreated. It's enough now errors and suffering - we will no longer be hidden!

3528 have signed the petition by now
 
Kalliope said:
Another blog post from initiator Nina E. Steinkopf.

She writes about the harm the competence service causes patients when they include research and diagnostic criteria beyond ME.

Kompetansetjenesten skader ME-pasienter
google translation: The Competence Service is harming ME patients

3598 have signed the petition by now.
Click to expand...

But we have a problem in Norway, that patients advocates haven't adressed yet (not me either). The competence service is hiding behind the papers by Wyller and - ehm - can't remember names now., but "the ususal suspects"...? Claiming there is no difference between patients selected by different criteria, and this whole argument about criteria is unjust. To counter arguments like this.

Wyllers citates it in his papers, when arguing why he chooses to use only 3/6 months unexplained fatigue in hos studies.

We really should be poking holes in it.
 
New blogpost from Nina E. Steinkopf, the initiator for this petition.

In this blogpost she pulls apart the national competence service for CFS/ME's argument that they are manoeuvring through all research concerning ME. When looking at what seminars they are actually participating at and the themes for the seminars they are organising themselves, it is quite evident that they are leaning strongly towards MUS and BPS approach and ignoring the biomedical.

Kompetansetjeneste velger psykosomatikken
google translation: The competence service chooses psychosomatic approach

3645 have signed the petition by now
 
Another blog post from the initiator for this petition, Nina E. Steinkopf. She's doing an amazing job with collecting information and documenting how bad things really are with the National Competence Service for CFS/ME in Norway.

This time she looks at the published research from the Competence Service and it is safe to say they are NOT as balanced as they claim to be regarding biomedical versus BPS approach to ME. It is actually quite shocking to see when listed in this way, and with Lightning Process deeply intertwined.

Kompetansetjenestens forskning
google translation: The research from the Competence Service

The petition has 4 341 signatures by now
 
You must log in or register to reply here.
Back
Top Bottom