Tjenesten og MEg | The health service and ME, Sintef FaFo

Two researchers from this project has written a thorough opinion piece about the planned Lightning Process study arguing why it's so problematic that the Norwegian Labour and Welfare Administration will be playing a role in requiting patients to the study. This has also been shared in the thread about the LP study

Det er ikke Lightning Process de ME-syke er redde for. Det er NAV
google translation: It's not the Lightning Process that ME patients are afraid of. It's The Norwegian Labour and Welfare Administration
 
This week there was an interpellation to Ingrid Kjerkol, the Norwegian Minister of Care and Health Services about what she will do to better the health care services for ME patients. The background for the interpellation was an article in the newspaper Klassekampen where researchers from this research project said that according to their study, 70% of ME patients deteriorate after a stay at a rehabilitation clinic and more than 90% of the patients deteriorate after work assessment.

As expected the answer from the Minister was rather disappointing and general.

So today the researchers have written an opinion piece in Klasskampen titled "What are you waiting for, Kjerkol?".

Some quotes:

"ME sufferers shall be met with respect, dignity and trust - and with updated knowledge", said the Minister of Health in the Parliament this week. The problem is that on her watch this patient group often feel that's not how they're met.

...

It doesn't appear as well considered to continue with today's practice while we wait for more knowledge and effective treatments. Today's measures are expensive, create waiting lists and they do not work. The process of intervention for ME patients instead appears as a bureaucratic exercise of exhaustion towards a fragile and traumatised patient group.

...

"It's important that we act on the basis of knowledge" the Minister said, but when will she have sufficient knowledge to act? Such political statements are increasingly appearing as an excuse to push problems ahead. Politicians should no longer do that when it comes to ME.

The situation we are researching now is problematic for a welfare state, and there is little indication that it will go away with further procrastination. If there's something obviously lacking in many meetings between the services and the patients, it's the feeling of respect and dignity that the Minister emphasised the importance of".

Opinion piece here (paywalled)
 
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The newspaper Dagsavisen has an interview today with researcher Anne Kielland.

A letter from the Directorate of Labor and Welfare emphasises that patients with ME or with drug addiction "require particularly in-depth assessments" when the Norwegian Labour and Welfare Administration (NAV) is assessing disability benefits.

Anne Kielland calls this a formalisation of the stigmatisation of ME patients.

A person from the Directorate of Labor and Welfare says the letter was prepared in collaboration with the Norwegian Directorate of Health and the National Competence Service for CFS/ME.

The article has also included some results from Anne Kielland et al's research project:
(google translated)

  • 660 people with CFS / ME and other fatigue diseases participated in the survey from Fafo / Sintef.

  • It is estimated that 474 of them met the strictest diagnostic criteria for CFS / ME. 186 had other fatigue diagnoses.

  • Seven out of ten ME patients answered that they experienced worsening of symptoms after a rehabilitation stay (- despite the fact that most said they were well during the stay and appreciated the social aspect).

  • Among the ME patients, just over nine out of ten stated that they became ill after a Nav-imposed work trial / clarification.

  • Among the entire sample, only seven percent had had a psychiatric diagnosis at some point before they developed a fatigue disease. (Five percent anxiety and depression, others were stress and PTSD.)

  • On the other hand, a total of almost six out of ten had experienced shorter, longer or lasting symptoms of anxiety or depression - as a consequence of the diagnosis. (39 per cent for shorter periods, 14 per cent for longer periods and six per cent had permanent symptoms. Slightly more people with ME had more permanent symptoms, while slightly more of the others experienced more short-term symptoms.)

  • Of the 357 ME patients, who were in a relationship with Nav, up to half were fairly or very dissatisfied with the caseworker's level of knowledge about the disease. Just under a third were fairly or very satisfied with the level of knowledge.

  • From register data, the researchers have calculated that an average of 1,852 Norwegians are diagnosed with CFS / ME per year. This is more than ten years ago and indicates that previous estimates, that between 10,000 and 20,000 people in Norway have ME, are too low.

NAV-ansatte bes om å forskjellsbehandle ME-syke: - Symbolsk brennmerking

google translation: NAV employees are asked to discriminate against ME patients: Symbolic stigmatisation
 
There will be final (I think) presentation of the findings later this month, in Norwegian :)

Edit:
It is going to be a seminar at 26th September 11:00-15:30 CET, titled "Avslutningsseminar for the samfunnsvitenskapelige prosjektet Tjenesten og MEg" that translated to "Conclusion seminar for the social science project The services and ME".

Currently I can only find the arrangement on their facebook page, but it says a seminar website will be created. The seminar will be streamed. So far the program (more information will come later according to the facebook post):

"The seminar will have
- 4 + 2 short presentation where the researchers share key findings from the project
- Panel debate: How can the results lead to improved services?
- Panel debate: How can the results lead to improved politics?
 
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The conclusion seminar now has its own website with a live streaming window for the 26th :)

5 år med ME-forskning: Hva har vi lært?
5 years of ME research: What have we learned?

The researcher presentations seem like what we have already heard, but here are the panel debate participants:

How can the findings from the project contribute to improving public services?
  • Marit Hermansen, chief physician, NAV (NAV is the Norwegian disability and welfare centre)
  • Lilly Ann Elvestad, general secretary, FFO (FFO is an organisation for people with disabilities)
  • Arne Grønningsæter, Fafo (Fafo is a research centre and Grønningsæter is part of the Tjenesten og MEg team)
Panel debate: How can the results contribute to better policy?
  • Trude Schei, assistant general secretary, Norwegian ME Association
  • Tone Wilhelmsen Trøen, parliamentary representative (H) (H is a political party)
  • Seher Aydar, Member of Parliament (R) (R is a political party)
  • Line Melby, SINTEF (Sintef is a research sentre and Melby has been part of the Tjenesten og MEg team)

Personal pet peeve, but it is mentioned that many patients experience that the health care system doesn't understand or see them but that everyone has at least one good experience and that this gives hope. I dislike this "ending on a positive note". I don't feel hope knowing I might meet someone reasonable (lets be honest, the bar is low for what is considered good care), at least if it's consistently bad (or good, my new GP has been quite good!) there is no getting one's hopes up and easier to make a decision if it will be worth seeing someone new.
 
From the third lecture: Use of health services between a random subset of the population (green), ME/CFS (light green), borreliose (dark green), breast cancer (yellow) and fibromyalgia (red).
upload_2023-9-26_11-42-25.png

I'm surprised the amount of services used is so high, when there is next to nothing offered.. but tehn again, people are forced into rehab and CBT sessions. Somatic services were most used, but also psych care.

A neurastenia diagnosis was 13 times higher in the ME/CFS group than the random population. Likely that this diagnosis is used instead of ME/CFS in certain circles?

Just some things I find interesting on the first Q&A they held after the presentations
- From registry data, Anne Kielland said they see a decrease in income starting about three years before diagnosis.
- When the cost of ME/CFS has been calculated, the cost due to carers not being able to work is currently not included (but they plant to)
- Patients can be lost to follow-up in the registries since they give up trying to get services. They can also be lost as they are coded under other diagnoses, for example sleep issues. Patients with more resources may opt for private services and will not show in official data.

From the first panel debate:
Arne Grønningsæter says they were surprised about how similar the patient experiences were. They wanted to find different experiences in the patient group, but overwhelmingly they found that patients experienced not being listened to.
 
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Yesterday's seminar was very interesting and thorough. The researchers presented their research project and findings. Then there were two debates with two politicians, a doctor from the Norwegian Labour and Welfare Administration, the general secretary of The Norwegian Federation of Organisations of Disabled People, the Norwegian ME Association and two of the researchers.

Apart from the doctor from the Labour and Welfare Administration, everyone else seemed to understand the severity of the situation for this patient group and one of the politicians even addressed the elephant in the room, which is the doctors with a biopsychosocial approach.

The research project published a short report with key findings yesterday. It's a PDF in Norwegian, so not possible to auto translate, but here's a summary (my translation). More research articles with these findings are on their way.

Report from a project about ME sufferers meeting with the Norwegian welfare state

The findings are based on a survey with 660 participants and on interviews with 24 families.

They found that people with diagnostic code G93.3 have higher education than average. They believe that might be due to less resourceful people are probably under-represented among those with a diagnose.

Key findings

- Less than half of CCC participants (patients meeting the Canadian Consensus Criteria) had any use of the most common measures/treatments for ME patients in Norway. For rehabilitation stays it's down to 20% and for CBT, 16%

- For most of the approaches the average score for usefulness is negative

- 94% of the CCC participants deteriorated from measures by the Norwegian Labour and Welfare Administration

- The difference between the Canada- and Fukuda participants who benefited from CBT and rehabilitation was statistically significant. The two groups have different experiences of the treatments.

- The participants more often experience recognition, than usefulness, of measures and services. There is also a significant group who don't feel seen and understood.

- The degree of PEM has a clear connection with feeling usefulness and recognition when it comes to most measures and services, and the connection to PEM is mostly statistically significant.

Are the services answering to ME-sufferers' needs?

All the people who were interviewed, spoke of good encounters with the services. But it was not the dominating story.
The bad experiences were about:

1. No treatment
2. No individualised services
3. Help received too late
4. Wrong services.

The Labour and Welfare Administration

9 of 10 in the survey said obligatory work assessment led to deterioration.

Child protection services

1 of 10 of the respondents had been in contact with the Child Protection Services. 70% said the contact made the disease worse.

Children with ME's meeting with the services

10 of the interviewed families had children with ME. Four mechanisms seem typical: non-acceptance of the patient and the disease, lack of relevant services, arrogance, and decisions lacking grounds in knowledge and rules.

The public health care's attitude to the patients seems to be reflected in the way the society, the media, the local community and families are treating the group, and may for some lead to self destructive attempts to hide the illness.

During the interviews they have seen stories where children, despite having been diagnosed with ME, being met with measures that belongs to other diagnoses, or explanatory models for ME that is not recognisable for the children's everyday life.

The report presents 3 cases and says these meetings with the public health care can be described as a form of institutional violence. The meeting with the public health services has partly made the illness worse and partly weakened the ability to better one's own situation.

The carers and family's health and working life

The researchers have looked into fathers, mothers, female and male spouses separately.

- All four groups use their GP more, but for the men it's not statistically significantly more
- All receive more sick pay. Women more than men, and most for mothers of people with G93.3
- Male carers have lower probability for not being unemployed and higher probability for working full time. Female spouses have lower probability for working full time. Female carers/family receive more benefits, male less.

The most severe and their carers

To be carer to someone with severe ME is heavy. They carry a huge responsibility. Their lives become limited. In addition many experience resistance and stigma from the health care.

Summary

Increase of people being diagnosed with ME, dissatisfaction with the services and lack of recognition of the disease.

The findings support previous statements from patient representatives and carers that the services in little degree are fitted to the needs of ME patients.

There is little to support that the measures the services offers today lead to improved quality of life or increased work ability, and sometimes they make the lives worse for patients and for carers.
 
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the researchers have also been interviewed by psykologisk.no (psykologisk = psychological), a news site on psychology in Norway. It's paywalled and I haven't read it, but the title reads "Large ME study: Expensive measures doesn't help much" the short introduction text visible says it's about the findings that rehab, CBT, work training etc. doesn't help much and can actually harm patients

Stor ME-studie: Kostbare tiltak hjelper lite
 
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The panel debate at the end of the closing seminar has also become a short article at psykologisk.no. Again paywalled so I haven't read it.

Yesterday the findings were talked about on one of our largest news TV-program dagsnytt 18. :thumbup: With Anne Kielland from the research groups, and two politicians from our two largest political parties (Høyre and Arbeiderpartiet).

Mostly good, some frustrating. PEM was called "post exertional fatigue" (this also happened once at the seminar, and I hoped it was a mistake by the researcher giving a presentation, but when it has happened twice by two researchers in the group I get a bit worried if they understand the difference or how using PEF is being perceived).

The politician that said patients are "about to lose trust" is a bit behind in my view :( The findings on how many patients are able to get back to work due to the treatments was not discussed much as they have not been peer reviewed, but there were few... I wish it had been left at that instead of then moving on to that patients may still get a higher quality of life.
 
Midnattsol said:
The panel debate at the end of the closing seminar has also become a short article at psykologisk.no. Again paywalled so I haven't read it.

Yesterday the findings were talked about on one of our largest news TV-program dagsnytt 18. :thumbup: With Anne Kielland from the research groups, and two politicians from our two largest political parties (Høyre and Arbeiderpartiet).

Mostly good, some frustrating. PEM was called "post exertional fatigue" (this also happened once at the seminar, and I hoped it was a mistake by the researcher giving a presentation, but when it has happened twice by two researchers in the group I get a bit worried if they understand the difference or how using PEF is being perceived).

The politician that said patients are "about to lose trust" is a bit behind in my view :( The findings on how many patients are able to get back to work due to the treatments was not discussed much as they have not been peer reviewed, but there were few... I wish it had been left at that instead of then moving on to that patients may still get a higher quality of life.
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Yes, even harder words could have been used, but it was nice to have a debate where all participants actually are trying to find some solutions or at least better the situation, instead of someone from the psychosomatic side making everything about their beliefs.

And all agreed that it's probably not ideal that a patient group deteriorate from the health services. So that's a start.
 
Midnattsol said:
The group has been part of a meeting at the directory of health on the new guideline developments in Norway, and quote:

"We have never before seen a patient group being this ignored"

Source (In Norwegian)
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Overall the minutes looks fine, but I’m not completely happy with this section (AI transcribed and translated):
De anser den bio-psyko-sosiale modellen som en mulig forklaringsmodell for opprettholdelse av symptomer, men kan utefra egen samfunnsvitenskapelige forskning (den sosiale komponenten i modellen) bare støtte hypoteser om at sosiale relasjoner mellom pasienter og tjenester er av en slik art at de kan virke sykdomsopprettholdende, og kanskje forverrende. På tross av at BPS-modellen kan ha verdi påpeker de at de tiltakene som i dag begrunnes i denne modellen ser ut til å ha svært begrenset nytte.
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They consider the bio-psycho-social model to be a possible explanatory model for the maintenance of symptoms, but based on their own social science research (the social component of the model) they can only support hypotheses that social relationships between patients and services are of such a nature that they can have a disease-maintaining, and perhaps aggravating, effect. Despite the potential value of the BPS model, they point out that the measures currently justified by this model appear to be of very limited benefit.
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The following assumes that the minutes gives an accurate portrayal of what was being said.

I do not understand why they would legitimise the BPS model as «a possible explanatory model for the maintenance of symptoms». It doesn’t matter if it’s possible, it matters if it’s plausible.

And they did not have to specify «the maintenance of symptoms» because we don’t even know of the symptoms are being maintained or if they are repeatedly caused. The latter is probably more plausible because of PEM.

Their last point is very good, but it also invalidates the BPS model as an explanatory model because their tailored interventions have failed to produce any results.

If you say that X causes Y and you remove X but Y remains, then X didn’t cause Y.

I realise that they might be playing politics here because the BPS lobby has accused them of being biased (oh, the irony), but the inclusion of such unfounded statements undermines their integrity and credibility.
 
Utsikt said:
It doesn’t matter if it’s possible, it matters if it’s plausible.
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It doesn't even matter if it's plausible. Plausible is enough to hypothesize, and that's where the ideology has been stuck at from day 1. Lots of things are plausible and wrong. In fact most wrong things are plausible with the 'right' assumptions. Angels are plausible given some reading of theology and holding such beliefs.

Astrology is plausible when taking into account the basic assumptions of its model: astral bodies influence life on Earth. This is a 100% correct statement. It makes astrology plausible. Yet astrology is 100% wrong. There are an infinite number of such examples.

Everything is plausible to someone who doesn't understand how things work, especially if they want something in particular to be true.

30 years ago this was weak. At this point it's criminal negligence to block all meaningful efforts to help millions based on some clownish plausibility of something or another.
 
rvallee said:
It doesn't even matter if it's plausible. Plausible is enough to hypothesize, and that's where the ideology has been stuck at from day 1. Lots of things are plausible and wrong. In fact most wrong things are plausible with the 'right' assumptions. Angels are plausible given some reading of theology and holding such beliefs.

Astrology is plausible when taking into account the basic assumptions of its model: astral bodies influence life on Earth. This is a 100% correct statement. It makes astrology plausible. Yet astrology is 100% wrong. There are an infinite number of such examples.

Everything is plausible to someone who doesn't understand how things work, especially if they want something in particular to be true.

30 years ago this was weak. At this point it's criminal negligence to block all meaningful efforts to help millions based on some clownish plausibility of something or another.
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I take plausible to mean that it is likely. How do you define it?
 
Utsikt said:
I do not understand why they would legitimise the BPS model as «a possible explanatory model for the maintenance of symptoms».

...

I realise that they might be playing politics here because the BPS lobby has accused them of being biased (oh, the irony), but the inclusion of such unfounded statements undermines their integrity and credibility.
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In post #36 in this thread I've written they have a "both sides" approach. I seem to recall my view at the time was based on their opinion piece in VG early in in the project "Me debatt i loop".
 
Midnattsol said:
In post #36 in this thread I've written they have a "both sides" approach. I seem to recall my view at the time was based on their opinion piece in VG early in in the project "Me debatt i loop".
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I didn’t know @Anne Kielland was here!

Anne, if/when you see this, would you be able to elaborate on the phrase about the BPS model being a possible explanatory model for the perpetuation of symptoms?

Is this the view of the research group?

It seems to be a deviation from the agnostic stance you previously expressed here.
 
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