2025-2026 Norwegian chronic fatigue guidelines - draft published

[bicentennial]

Lovely to see the position assumed out in the open defining itself at last

Quite possibly scoring an own goal while competing for contracts

I guess the objections are to:

1. PEM warranting exemption from the fringe rehab program which insists on treating 2 different cohorts, maximising its subsidy, so it must:

1a) get its Guideline to include both cohorts - then point out the incompatibilitiy of one program fixated on fringe rehab for both cohorts

1b) probably present the contrived nordic paper that PEM does not change outcomes in this rehab program - so no reason for exemption

I look forward to the quality control applied to evaluate the highly organised nordic PEM evidence. I guess the only marketable solution to this incompatible anomaly is:

- separate 2 Guidelines and 2 separate programs, removing the ME/CFS subsidy from the protesting fringe rehab program

2. I guess its 2nd objection is to the statement that this rehab program did not suit all patients - no one method or program suited all patients - so:

- this rehab program cannot keep its precious, highly treasured contract monopoly on the whole subsidy (needing expansion on post-pandemic scales to include for Long Covid). No more monopoly - tough heh

The same statement came out of Scotland - courtesy of Dr Janet Scott's top-level asessment: this rehab program does not suit some patients

The necessary ME/CFS program and the necessary fatigue program remain incompatible. There will be an arbiter because the fringe rehab program cannot tolerate losing its contract on ME/CFS. That is its case.

 

[Midnattsol]

exercise-induced exacerbations (PEM)​

It is not exercise induced, it is effort induced. These are fundamentally different.

The distinction matters because some want to keep the focus on physical exercise and hence the understanding limited to deconditioning type interpretations, not on the broader phenomenon of all effort being a problem.

They do also mention that «effort» can also be cognitive effort, not just physical.

Then again it’s buried under advice such as «enjoyable activities are more restorative (than non-enjoyable activities)», «find out what is most important to you», «set goals».

Of course your helpful health provider will help you find out what is enjoyable, important and would be a good goal to set.

 

[Jonathan Edwards]

As Victoria Wood put it: it's all totally fina bodo.

 

[Utsikt]

This is from the section where they talk about the most severe. There is no mention about deaths.

These are back to back paragraphs. It feels like it’s written by two different people. Is this what compromise is supposed to look like?

A survey of patients with severe and very severe ME/CFS in Norway (Sommerfelt et al, 2023) reported fatigue as the most pronounced symptom, followed by muscle and joint pain, cognitive problems (brain fog), sleep disorders and sensory intolerance. Very seriously ill patients often had problems eating. A large proportion reported intolerance to light and sound. A very large number (approximately 70%) felt that they did not receive adequate health care, approximately half experienced adequate treatment for pain, sleep problems and stomach complaints. This supports the need for comprehensive, individually tailored follow-up.

User experiences highlight that recovery from long-term fatigue and ME/CFS is possible through mental strategies, changed thought patterns and social support. Support from dedicated people to accompany them in the recovery process is highlighted as essential. Several describe that there have been periods of deterioration along the way, but that the right person at the right time contributed to hope and mental support. Similar experiences have been highlighted through qualitative interviews with people who have recovered (Bakken et al, 2023 and Krabbe et al, 2023). Other user experiences show that many have tried mental strategies, but several report a deterioration afterwards. Different experiences show that there is a need for more knowledge about what can contribute to a possible recovery.

 

[Hutan]

It is sounding pretty hopeless. I'm not sure what a willing GP or hospital doctor is supposed to take from those two paragraphs about people with severe ME/CFS.

Several describe that there have been periods of deterioration along the way, but that the right person at the right time contributed to hope and mental support.

That looks like an incitement for medical professionals to push through with whatever programme they think is right, regardless of whether their patient is deteriorating.


It also sounds as though the rehabilitationists and GPs will ignore the guideline anyway.

What is the next step? Is there any real hope that feedback might improve the guideline? Even if it was made better, is it likely to influence care?

 

[Utsikt]

What is the next step?

There is a three month feedback period. I’m not sure how the associations intend to respond, and what they will put the most weight on.

Is there any real hope that feedback might improve the guideline?

I doubt it. The people involved from the department don’t seem to fully understand what they are doing. They seems to believe that «clinical experience» and «personal anecdotes» have real value when it comes to making recommendations about treatments (anything that’s intended to cause an improvement from the natural course).

Even if it was made better, is it likely to influence care?

The statements that use strong language have to be followed by law, but I haven’t gone through the document and actually found them. I suspect everyone will carry on as normal.

 

[bicentennial]

...advice such as «enjoyable activities are more restorative (than non-enjoyable activities)», «find out what is most important to you», «set goals».

How long have these "dedicated people" in their highly subsidised specialist clinics been "helping severely ill patients along the way", with mental strategy to discover hidden gratitude, goals and priorities

- hidden because if you ask them some patients say "I don't have any so please help me find my healing goal, my healing gratitude and my healing priority, please help me find out what I enjoy"

- or they say things which this program forbids - like: "I was wonderfully grateful for the medical exemption, income top-up, special diet and oral nutrition support so I can still nurse myself at home and stop crashing - please do not forbid it and take it away to force me onto your program"

I guess the fringe rehab program in question was already trialled for many years already, but had no validating clinical data to collect for the research it now begs for - since patient feedback is not proof either.

And "hope with mental support" was not recovery either. If this is the Department's vanity project it is still too anomalous and not sellable. Also it got stuck in a draft peppered with organised patient representation.

I see no statistics for all the ME/CFS patients it claims it recovered already. It has nothing to offer non-believers. It looks like an ideology

Maybe there is a marketable ME/CFS app coming on (like the one the stroke patients do appreciate). But even so, this "dedicated" life-coaching is not affordable - so its only a niche market.

Of course your helpful health provider will help you find out what is enjoyable, important and would be a good goal to set.

Harrumpoph I expect Guideline development to backfire on this fringe of rehab, and produce another exclusion (like Britain did with the GET exclusion).

Subsidised ME/CFS life-coaches for elaborate goal-setting might be it.

Which bit of this rehab proposal do Norwegians think is the 1st thing their combined Guidelines need to exclude for ME/CFS patients?

A fringe of rehab invoked academia to obtain subsidy for its glorified life-coaches. Getting people back to health, school, work is good. But it cannot be enforced on a condition like ME/CFS. Everyone knows this.

The time ran out for this ME/CFS rehab program to produce the clinical data for its own claim that it was working - all along - the "way"