Norway: Opinion piece by prof. Saugstad: Give ME patients help that works

[Kalliope]

And that was the scariest thing about the whole experience. The people that are hired to help us in this system are just letting the abuse continue, actually encouraging it. Maybe they don’t realise this. Maybe they don’t realise what actually happens at LP courses or between patients and psychologists, but they would if they listened. I think one the most important jobs of a competence center should be to listen.

I think you are hitting the nail on its head here and I'm so sorry for your awful experience and how you were met.

Regarding Ukom that @andypants mentions. Nina E. Steinkopf had a long meeting with them recently and encourages ME patients to report bad experiences with the health care system. It doesn't have to be very severe things, but it's probably useful for them to receive many reports in order to understand how systematic the bad treatment of ME patients is.

Otherwise one can also complain to the county medical officer (fylkeslege).

Here is a blog post Nina wrote about her meeting and about Ukom
https://melivet.com/2019/12/12/varsel-om-skadelig-behandling-av-me-pasienter/

Here is a link to Ukom
https://www.ukom.no

 

[andypants]

Thanks @Kalliope I didn’t have it in me to collect all that today so very glad you did!

 

[rainy]

They seem to care a lot about their statistics (if not people, individuals), and if the numbers are in there they can't say it never happens, they can't say it doesn't exist.

This is a very good point!

Ukom looks good. I will definetly report to them. Thank you so much for the help and kindness, everyone. It feels so important to me to do something to contribute, but I'm not good at finding the options myself.

 

[Invisible Woman]

I do think we need to start holding authorities/therapists/clinics to account more. They should actively investigate possible harms from treatments as well as possible benefits.

We know that some of the UK clinics don't even have any reporting mechanism. I wonder how we could change that.

 

[rvallee]

I don’t think we should spend so much time on cognitive behavioural therapy, specifically. There are many other cognitive support therapies.

This really shows the intellectual and moral bankruptcy at the heart of the entire psychosocial paradigm. This paradigm is 100% built on biased unreliable open label trials showing cherry-picked evidence for CBT (and GET, which has CBT built-in). This is the whole of the evidence, there is no other evidence supporting this paradigm. So to say that it is generically right about cognitive therapies, just not about CBT, undercuts the entire evidence base.

The same with PACE, over which the conversation has changed in recent years to "stop obsessing over PACE, there is other evidence" even though the entire paradigm used in practice is dependent on "PACE showed CFS is psychological" and that all other evidence suffers from the same flaws. That's the whole evidence for the paradigm right here, built on an invalid argument as cause cannot be inferred by a pragmatic trial.

The entire paradigm is entirely devoid of any evidence and the few bits of unreliable evidence that were promoted to make the case that it is a behavioral problem are being walked back while insisting the conclusions, which are built exclusively on those, remain the same.

The goalposts move constantly, often back and forth. Mutually exclusive assertions are all held as true. The entire thing is a fraud, it's maddening. Every claim is nonspecific and vague even though those are generally the specific reasons cited for denying ME exists as the patients report it. The apathetic dismissal of millions of lives as if we are nothing, disposable nobodies in a game of ideological rhetoric that places no value on our very existence.

I am so sick of being lied to and about by self-serving jackasses.

 

[Andy]

We know that some of the UK clinics don't even have any reporting mechanism. I wonder how we could change that.

That's chiefly because, I would have thought, there is no reporting mechanism nationally, in the UK at least, for harms from behavioural interventions in the same way as there is for pharmaceuticals. So while the assumption nationally is that no harm can come from behavioural interventions, there is unlikely to be any mechanism put in place locally.

 

[Invisible Woman]

So while the assumption nationally is that no harm can come from behavioural interventions, there is unlikely to be any mechanism put in place locally.

Agreed, but I wonder if there's something we could potentially do about it?

It's dodgy circular reasoning again. If they don't allow a mechanism for harms to be reported, then no harms will be recorded. Therefore the assumption is there is no need for such a mechanism.

This is clearly absurd.

 

[Mithriel]

Did one clinic not say that there was no point looking for harms because they would not be doing the treatment if it could harm anyone

 

[Sly Saint]

 

[Wonko]

No one has proved that completely homemade haggis made from lamb, when eaten in a disused frogs leg factory, doesn't cure ME either - some things are pretty obvious, especially when combined with people not actually being cured of anything, and manipulative practices designed to suppress criticism.

 

[Kirsten]

If the clinician you see is a counsellor in the uk then they should be a member of BACP or COSCA, both professional bodies for counsellors. You can complain to them as counsellors and psychotherapists under them agree to follow their ethics code. So if you feel like something unethical happened during your sessions and you don't feel up to submitting a complaint to the specific centre, then these are an option. If you google them you'll find contact info. Hope that helps. I don't know about other countries, sorry.

 

[Kalliope]

The opinion piece by prof. Saugstad has spurred the Norwegian Labour Party politician and member of Parliament Tuva Moflag to ask the Minister of Health how to secure ME patients equal treatment, based on newer research pointing towards ME as a physiological illness.

https://www.stortinget.no/no/Saker-..._KrM54E4tOUIclKeLACL4lMZgzE9G4iA4I285_7KyZmY8

The minster of health has now given his answer.

ME has apparently turned into one of several fatiguing conditions. Even the national guidelines about CFS/ME from the Directorate of Health he instead calls guidelines for fatiguing conditions. And a clinical pathway for CFS/ME which was underway has turned into a clinical pathway for fatigue.

He has asked South-Eastern Norway Regional Health Authority for input for his answer and they say the reasons for developing and upholding of CFS/ME are probably complex.

However, he underlines that patients and carers have important competence from their experience, and he expects that professional communities are open for this knowledge and actively involve patients and carers in decisions about treatments.

https://www.stortinget.no/no/Saker-...Nf67Rp2EddqKzjLqtRJBEXvhGMn4G2z7vLgIDKXDljTJA

google translation:
https://translate.google.com/translate?sl=no&tl=en&u=https://www.stortinget.no/no/Saker-og-publikasjoner/Sporsmal/Skriftlige-sporsmal-og-svar/Skriftlig-sporsmal/?qid=78407&fbclid=IwAR1gSKe99qP54cNf67Rp2EddqKzjLqtRJBEXvhGMn4G2z7vLgIDKXDljTJA

 

[rvallee]

However, he underlines that patients and carers have important competence from their experience, and he expects that professional communities are open for this knowledge and actively involve patients and carers in decisions about treatments.

That would be a full 180 turnaround. And, no, professional communities are not open to this knowledge, they are in fact extremely hostile and dismissive of everything that actually matters and have built their belief system specifically in contradiction to what we say and has been recorded and researched for decades.

This will not happen magically, it has to be implemented with purpose and in full understanding of how we got to here. Meanwhile there is a total power imbalance that allows the entire substance of what matters to this disease to be dismissed along with patient experience. There is instead this artificial discussion over some nonsensical philosophical split that the patient community could not care less about.

The entire "discussion" is happening over something that is wholly insignificant and irrelevant to the topic, it is only brought forward by ideologues who find it perfectly fine and reasonable to sacrifice the lives of millions of people over this sollipsist philosophical problem that only concerns those who are not affected by the real issue.

So what now? Thoughts and prayers? A "deal" where nothing we need or say is considered and everything these ideologues want is imposed on us, as it has for decades? You can't "expect" something that has been systematically denied, even mocked, for decades and imposed through coercion and against explicit dissent that has been consistently voiced over decades.

I guess there is this belief that something this malicious and immoral could not happen and we are exaggerating a bit, or something like that. Sadly, this is not the case and in fact has never been the case. We can certainly expect that a unicorn will fall down from the sky on a triple rainbow and gift us the cure to this disease. Or maybe treat objective reality as its own thing. Different strokes.