V.R.T.
Senior Member (Voting Rights)
State sanctioned deterioration and death in the guise of 'confidence building'
Norway: 2026 Guidelines for chronic fatigue and ME/CFS - draft published
- Thread starter Kalliope
- Start date
bicentennial
Senior Member (Voting Rights)
I may say these views are warranted by the notorious results of unruly enforcement across the English-speaking world for a long time to date.
Hence the research and development which has already brought Norway's draft enforcement procedure to be a bit better than the UK's current enforcement procedure.
In the preliminary procedure this matters enormously. An improved pre-requisite for any enforcement
There is always room for improvement. In the UK, that principle is still upheld by the BASW (social workers), but not yet adopted by the RCP (physicians). For evidential reference one can present the BASW FII Guideline
Abbreviated Practice Guide for Social Work Practitioners: Fabricated or Induced Illness and Perplexing Presentations, May 2022, Dr. Gullon Scott et al
Also discussed on S4ME here and with the evidence it relies on here, thanks to @Maat :
In the UK there is still no way a Safeguarding procedure can do what a Court can do - require and review the evidence in a dangerous dispute with vulnerable people in the front line of fire, vulnerable people who must balance all risks in the field, with no power, and their own authority suspended by means of suspicion.
But upon very considerable, undisputed evidence, the NICE Guideline (1.7) flags up that risk of confused safeguarding. This is still sinking in because the dispute is not just between the client and the service, or between service agents, or between expert medical witnesses. It is still a Guideline dispute between the professional bodies, and between their respective Guidelines, waiting for the resolve of Courts and Coroners
Norway is still being used in pursuit of this persistent dispute, pursued by the contention of expert contenders. So is Australia used, and so is the UK.
In the UK one is advised not to agree on a plan one cannot safely comply with, because then non-compliance is all the more grounds for enforcement. But - some "compliance" requirements can be hightly questionable, as proposed with no good reason (a mere device). UK services are far too embarrassed by the UK's safeguard. procedures in case of ME/CFS. So they cannot be mentioned in the public service presentations
Norway may draft a good Guideline to prevent such unnecessary, avoidable, anomalous and dire fall-out
Hence the research and development which has already brought Norway's draft enforcement procedure to be a bit better than the UK's current enforcement procedure.
In the preliminary procedure this matters enormously. An improved pre-requisite for any enforcement
There is always room for improvement. In the UK, that principle is still upheld by the BASW (social workers), but not yet adopted by the RCP (physicians). For evidential reference one can present the BASW FII Guideline
Abbreviated Practice Guide for Social Work Practitioners: Fabricated or Induced Illness and Perplexing Presentations, May 2022, Dr. Gullon Scott et al
Also discussed on S4ME here and with the evidence it relies on here, thanks to @Maat :
In the UK there is still no way a Safeguarding procedure can do what a Court can do - require and review the evidence in a dangerous dispute with vulnerable people in the front line of fire, vulnerable people who must balance all risks in the field, with no power, and their own authority suspended by means of suspicion.
But upon very considerable, undisputed evidence, the NICE Guideline (1.7) flags up that risk of confused safeguarding. This is still sinking in because the dispute is not just between the client and the service, or between service agents, or between expert medical witnesses. It is still a Guideline dispute between the professional bodies, and between their respective Guidelines, waiting for the resolve of Courts and Coroners
Norway is still being used in pursuit of this persistent dispute, pursued by the contention of expert contenders. So is Australia used, and so is the UK.
In the UK one is advised not to agree on a plan one cannot safely comply with, because then non-compliance is all the more grounds for enforcement. But - some "compliance" requirements can be hightly questionable, as proposed with no good reason (a mere device). UK services are far too embarrassed by the UK's safeguard. procedures in case of ME/CFS. So they cannot be mentioned in the public service presentations
Norway may draft a good Guideline to prevent such unnecessary, avoidable, anomalous and dire fall-out
It seems to me that Norway's draft for a risk assessment procedure, has more provision than the UK procedure : for presenting the client's case. So this is something to work on, in case the central and local services will follow the procedure.
3. Need for health care in the home or in an institution
To Do .. bit by bit
Contribute possible evidence, reason, perspective and insight:
- maybe list the most relevant S4ME drafts, posts, discussions (and factsheets)
- for example - but I have not I have not checked these for relevance:
Hospital Care Plan and Respite (dysautonomia theory evidentially irrelevant),
An open Letter to BACME,
What people need in the way of services
Severe difficulties with eating
Contribute possible evidence, reason, perspective and insight:
- maybe list the most relevant S4ME drafts, posts, discussions (and factsheets)
- for example - but I have not I have not checked these for relevance:
Hospital Care Plan and Respite (dysautonomia theory evidentially irrelevant),
An open Letter to BACME,
What people need in the way of services
Severe difficulties with eating
The municipality must consider confidence-building measures in relation to service recipients who refuse necessary health care
View previous versions
External consultation:
* In situations where the patient declines services that healthcare personnel consider necessary, the municipality should provide arenas for systematic ethical reflection (ks.no) and interdisciplinary discussions.
* The person themselves, any next of kin, the GP and others involved are invited to the conversations.
* The business manager must ensure that the service investigates the reasons why the person declines help from the public sector.
* Relevant topics to map are, for example:
Has the patient received sufficient information, and is this understood?
The patient's reason for rejecting the assistance?
Does the patient react negatively to someone or something in connection with the provision of services?
What is important to the patient?
And is it taken into account?
Does the patient want a different type of assistance than what is offered?
Is it possible to enter into a dialogue with the patient and reflect on their life situation?
Does the patient understand the consequences of rejecting assistance?
====
The business manager must ensure that the service maps the consequences and risks of not providing services to the patient.
Relevant questions can be:
What are the consequences of a lack of aid?
What measures can limit the consequences?
What is the likelihood that the patient will continue to refuse assistance in the future?
How does a lack of assistance affect next of kin?
What measures can limit the consequences for next of kin?
====
The enterprise manager is responsible for ensuring that the service and those involved discuss solutions based on findings from surveys and assessments of risk and competence to consent.
Relevant questions can be:
How serious is the situation?
What is the risk of health failure or criminal offences?
How great is the need for health care?
What are the social consequences of the patient refusing help?
What have the parties involved agreed on, and what are the disagreements?
How to provide assistance in a way that the patient can accept?
How to interact with the person about the purpose and design of the assistance?
Who does the patient trust?
What can be confidence-building measures?
Should assigned services through the municipality's decision be terminated?
Who is to follow up measures, as well as when and how, must be documented.
Latest academic change: 04 February 2026
View previous versions
rvallee
Senior Member (Voting Rights)
I pretty much universally find that this whole idea only makes sense when we substitute fatigue with motivation. Everything fits into place when that's taken into account.
So, for most deniers, we might as well have "chronic low motivation", not even a need for syndrome. Therapy then becomes all about figuring out why we are unmotivated, or how to motivate, for which it might make sense to involve some activity coaching (if only it were true). Hence why despite how it's completely missing from the literature outside of being loosely referred to as a psychological co-morbidity, it's still common for many to think of CFS as a sort of depression, where low motivation is also not accurate, but facts never get in the way of a good narrative.
It just has the small problem of being completely wrong, but when has that ever stopped even a large group of people from doing horrible things with (alleged) good intentions?
bicentennial
Senior Member (Voting Rights)
This is why it is so important to install the right to decline in a Guideline applied to ME/CF, and resolve the anomalous contention making refusal into the grounds for its enforcement, whenever any refuse-nik patient declines a program (that is also in some ways invasive).
First the draft procedure would look for a spoke in the wheel, but it did not re-examine the established program in question, the grounds and legality of that program, its plans and its contingency plans
The need to profile one's own management program, in one's own words, is particularly important where a coercive, enforcable, experimental therapist is only prepared to dispute the patient's own program. Even police doctors, and disability assessment doctors, are supposed to record a person's own words, especially if disagreed
The draft procedure for regulating imposition is an advance. But the grounds for enforcement are unbending. Why?
Is Norway prepared to write a Guideline without any guideline on the enforcement it expects when the talk stops? This further procedure cannot be removed from the clinic and guideline
Since the enforcement program is clinical and presents a clinical rationale, it cannot be removed from the clinic
Norway had adopted a clinical rationale, which then gave it more rationale to re-examine.
The clinical grounds it had adopted and is still being given, are particular to those conditions in which experimental therapists are demanding a legal right to coerce, else enforce, "therapy" on their clients. That is not therapeutic.
Occasionally there are extreme cases of a hospital going to court to legitimise the imposition of a treatment or an end to life. But that is not the same as imposing an inflexible therapy program upon a much larger group of vulnerable people, indiscriminately, with threats and with force, to maintain this irreconciliable dispute of the limits on their capability - planning to do this case by case, at cost.
It is experimental because it has shown no success rate to warrant its application to this cohort, and it has shown no such success by its enforcement, either. It cannot even show how to correct its blunders.
Is the Norwegian state aware of the blatant bullying and manhandling played out in a very few UK hospitals over the last 10 years, on inexplicably contrived grounds of "patient safety"?
It seems - in such contention - there is no normal application to court and no court hearing for the patient to defend their case. Yet the "negotiations" had failed.
Also the safeguarding procedure in these cases had to be ongoing - in the UK, these things do not even begin to happen without a child or adult protection procedure. But this ongoing safeguarding procedure had to be concealed.
That is a drastic measure, and it appears to me that it happened in several cases eg in Devon and Chester.
It is inevitable that Norway's municipal and health service will be caught in just such anomaly, if not resolved from the outset by the Guideline.
If not there would be a quandary in which the provisons of this Norway draft could not be applied by the safeguarding teams. If a team cannot show itself, then it cannot consult frankly with the patient who declines.
These are legal issues and so this drafting of a Guideline needs to take legal advice - obviously this needs to be independent legal advice. The factions can present legal evidence from all sides, but the expert advice needed is independent.
The UK services are highly trained in safeguarding, but oddly unable in public to inform the public, patients and families what happens beyond the point where talks are intitiated but fail on a compliance agenda (which cannot even be called a compliance agenda).
The hints of this mystery un-nerve a targeted patient througout.
The number of enforcement applications to court show that talks like this continue to break down. Norway will know this if it is not lawless.
So the preliminary pre-requisite procedure, described in the draft, is to discuss the disagreement with an implacable, inflexible, clinical authority, required to reason and investigate some of the reasons for declining the offer of a programmed therapy.
This is to give the patient a chance and find out any spokes in the wheel etc. But it remains totally inflexible in the demand to impose a program supposed to alter behaviour.
Behavioural modification is .... .... and invasive - like surgery it can be risky. Calling it CBT doesn't alter the fact, the intention to modify a human being. Enforcing modification is a legal matter.
In this case its sounding extremely alarmist, as usual. Covernment needs to be proof against alarmists. And help children for real. We are not "going to hell in a hand-basket" when allowed to manage without interference.
This is the nettle for the Guideline to grasp before it turns into a mutual aggravation, case by case; the determination to impose a therapy on an increasing, big scale, and its evidence for alarming everyone thereto, also its refusal to share the budget and planning with more agreeable alternatives.
This dispute of capability and its human limits can be nipped in the bud. Count the numbers. How many patients already say they cannot comply with the plan to inflict this program as if they all have a phobic hang-up and lost the confidence the state will return to them. Its not the way to chat up a prospective partner.
People are not that that feeble-minded. How much money is at stake, and what does the ME/CFS community want done with their portion (which is so frustrating to the people who demand all the subsidised commissions instead)?
The evidence for their prescribed program needs to be re-examined. The UK evidence for regulating the FII procedure needs to be examined. That BASW evidence cites the NICE ME/CFS Guideline and it critiques the older RCP FII Guideline. There is also the paper on the anomalous consequences of such anomalous enforcement - on so many families.
Please will all the relevant authorities in Norway look again at this evidence and resolve what the UK cannot to date resolve - the dispute between professionals, the service agencies, the serving police, social workers, educators and trainers, the health services, and the insurance services (state and estate), all stakeholders
.
Then bring all our precious safeguarding and rescue services back into the light.
The UK system has a systematic BASW-vetted procedure to resolve suspicion of perplexing cases, fake illness and induced illness - where the health and safety parameters fall into dispute. It is extremely dangerous to dispute health and safety parameters - which tend to be the same parameters for comfort and efficincy, so it is torturous and crippling as well very dangerous, while still in confusion
I doubt these enforcements, as can happen, are all legitimate, enforced on severely ill patients and without accessible legal process.
But I don't know if that was allowed in law.
Since the enforcement program is clinical and presents a clinical rationale, it cannot be removed from the clinic
Norway had adopted a clinical rationale, which then gave it more rationale to re-examine.
The clinical grounds it had adopted and is still being given, are particular to those conditions in which experimental therapists are demanding a legal right to coerce, else enforce, "therapy" on their clients. That is not therapeutic.
Occasionally there are extreme cases of a hospital going to court to legitimise the imposition of a treatment or an end to life. But that is not the same as imposing an inflexible therapy program upon a much larger group of vulnerable people, indiscriminately, with threats and with force, to maintain this irreconciliable dispute of the limits on their capability - planning to do this case by case, at cost.
It is experimental because it has shown no success rate to warrant its application to this cohort, and it has shown no such success by its enforcement, either. It cannot even show how to correct its blunders.
Is the Norwegian state aware of the blatant bullying and manhandling played out in a very few UK hospitals over the last 10 years, on inexplicably contrived grounds of "patient safety"?
It seems - in such contention - there is no normal application to court and no court hearing for the patient to defend their case. Yet the "negotiations" had failed.
Also the safeguarding procedure in these cases had to be ongoing - in the UK, these things do not even begin to happen without a child or adult protection procedure. But this ongoing safeguarding procedure had to be concealed.
That is a drastic measure, and it appears to me that it happened in several cases eg in Devon and Chester.
It is inevitable that Norway's municipal and health service will be caught in just such anomaly, if not resolved from the outset by the Guideline.
If not there would be a quandary in which the provisons of this Norway draft could not be applied by the safeguarding teams. If a team cannot show itself, then it cannot consult frankly with the patient who declines.
These are legal issues and so this drafting of a Guideline needs to take legal advice - obviously this needs to be independent legal advice. The factions can present legal evidence from all sides, but the expert advice needed is independent.
The UK services are highly trained in safeguarding, but oddly unable in public to inform the public, patients and families what happens beyond the point where talks are intitiated but fail on a compliance agenda (which cannot even be called a compliance agenda).
The hints of this mystery un-nerve a targeted patient througout.
The number of enforcement applications to court show that talks like this continue to break down. Norway will know this if it is not lawless.
So the preliminary pre-requisite procedure, described in the draft, is to discuss the disagreement with an implacable, inflexible, clinical authority, required to reason and investigate some of the reasons for declining the offer of a programmed therapy.
This is to give the patient a chance and find out any spokes in the wheel etc. But it remains totally inflexible in the demand to impose a program supposed to alter behaviour.
Behavioural modification is .... .... and invasive - like surgery it can be risky. Calling it CBT doesn't alter the fact, the intention to modify a human being. Enforcing modification is a legal matter.
In this case its sounding extremely alarmist, as usual. Covernment needs to be proof against alarmists. And help children for real. We are not "going to hell in a hand-basket" when allowed to manage without interference.
This is the nettle for the Guideline to grasp before it turns into a mutual aggravation, case by case; the determination to impose a therapy on an increasing, big scale, and its evidence for alarming everyone thereto, also its refusal to share the budget and planning with more agreeable alternatives.
This dispute of capability and its human limits can be nipped in the bud. Count the numbers. How many patients already say they cannot comply with the plan to inflict this program as if they all have a phobic hang-up and lost the confidence the state will return to them. Its not the way to chat up a prospective partner.
People are not that that feeble-minded. How much money is at stake, and what does the ME/CFS community want done with their portion (which is so frustrating to the people who demand all the subsidised commissions instead)?
The evidence for their prescribed program needs to be re-examined. The UK evidence for regulating the FII procedure needs to be examined. That BASW evidence cites the NICE ME/CFS Guideline and it critiques the older RCP FII Guideline. There is also the paper on the anomalous consequences of such anomalous enforcement - on so many families.
Please will all the relevant authorities in Norway look again at this evidence and resolve what the UK cannot to date resolve - the dispute between professionals, the service agencies, the serving police, social workers, educators and trainers, the health services, and the insurance services (state and estate), all stakeholders
.
Then bring all our precious safeguarding and rescue services back into the light.
The UK system has a systematic BASW-vetted procedure to resolve suspicion of perplexing cases, fake illness and induced illness - where the health and safety parameters fall into dispute. It is extremely dangerous to dispute health and safety parameters - which tend to be the same parameters for comfort and efficincy, so it is torturous and crippling as well very dangerous, while still in confusion
I doubt these enforcements, as can happen, are all legitimate, enforced on severely ill patients and without accessible legal process.
But I don't know if that was allowed in law.
People need to know what is and is not allowed in a transparent law.
I do not know the law on using restraints, force and other controls like light, sound, food, and sleep on helpless hospital inpatients without benefit of the law.
Apparently it can be done without a court order. Is this where Norway wants to go? It resolves nothing - except to make the end of life look preferable - to all involved near and far. First we stand at this crossroad.
It is so important for this draft to safely justify, expand and enshrine the right to choose, the right to refuse and the right to state one's own management regime in one's own words - when faced with a coercive, enforcable plan to enforce a programmed therapy on oneself and on a whole category
The Norwegian ME/CFS community needs to stand on solid grund and state the essential minimal provision they can best manage with.
Did Norway facilitate them to determine this, as well as facilitating the enforcable therapists to state their own case? Which stakeholders are subsidised and resourced to make a case?
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