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

[Kalliope]

This thread has been split from the 'News from Scandinavia' thread

Thought it might be useful to have a thread on news from Scandinavia. Hopefully it can become an archive and useful as a reference in future.

Starting with the kickoff of one of the four research projects which recently got funded in cooperation with ME-patients by the Research Council of Norway; Tjenesten og MEg (The health service and I).

SINTEF and Fafo (both independent research organisations) collaborate on a research project on ME-patients and their meeting with the health service. SINTEF has previously written three very thorough reports on the lack of care for ME-patients.

They are planning on making qualitative interviews with ME-patients and a big survey.
They have a Facebookpage and a website for those who want to follow them.

Last month they invited to an open meeting to introduce their project and to discuss and receive inputs from patients, carers and others. The meeting was streamed and later uploaded on YouTube.



It was a very successful meeting, with an open and respectful dialogue and with incredibly powerful and insightful input from the audience.

I followed the meeting on streaming, and my impression was that the researchers present were thorough, humble, genuinely interested and listened to what was said.

Am excited about the project and looking forward to read it when finished. Hopefully in 2019.

As of april 2021, the project is recruiting severe pwME and their families in Norway. See Qualitative study in Norway recruiting participants

 

[Kalliope]

Moved from Norway - CFS/ME Research Conference Nov. 25th-26th 2019

A Norwegian research project about ME patient's meeting with health care services presented preliminary findings and afterward shared the slides from the talk on Facebook.

It includes more information about their project and how they proceed, quotes from qualitative interviews, situation for children and carers, not being believed, wishes for the future and more.

I will try to translate some of this in a few days.

 

[Kalliope]

Moved from Norway - CFS/ME Research Conference Nov. 25th-26th 2019

A Norwegian research project about ME patient's meeting with health care services presented preliminary findings and afterward shared the slides from the talk on Facebook.

It includes more information about their project and how they proceed, quotes from qualitative interviews, situation for children and carers, not being believed, wishes for the future and more.

I will try to translate some of this in a few days.

Here's an unofficial translation of some of the slides

----
Experiences and perspectives from meetings with public services among ME patients and their families: Preliminary findings

CFS/ME- research conference, November 2019 at the Norwegian Institute of Public Health

----

Tjenesten og MEg (The service and I) is:

• ...a cooperation between (the research institutions) Sintef and Fafo
• ...a social study, not a medical project
• ...funded through the BehovME-allocation from the Research Council of Norway
  
  
• a cooperation with other partners:
  DePaul University
  London School of Hygiene & Tropical Medicine
  The Norwegian Institute of Public Health
  user groups

---

The project

• Work package 1

Who are affected by ME, what services do they receive and which statistical association does the illness have with for instance socioeconomical indicators?

• Work package 2

The ME patients and carers experiences with public services as school, health and welfare.

• Work package 3

Prevalens and living conditions: Who receives the ME diagnoses, who fulfils DSQ's research criteria for ME?

---

Work package #2

• Question: Which experiences do patients and carers have with public services as school, health and welfare, and with the coordination between these?

• Perspective: Clean, undisturbed patient perspective
• Data: Variation in experiences and perspectives, not representativity
• Method: Qualitative interviews, in a broad assortment of households
• Unit: The family. We consider the whole family to be affected, and try to interview the families together, if the patient is able to do this
• Approach: Narratives with mnemo techniques (interview guide)

• Limitation: As we will follow patients over a few years, we have recruited among sick people, and not interviewed anyone who has recovered. Yet. But perhaps someone in the assortment will improve or recover before next interview.

---

Family constellations

• Single patient
• Female patient living part time at home and nursing home
• Female patient who had moved back with her parents
• Married/co-habitant couple where the female is sick
• Married/co-habitant couple where the male is sick
• Married gay couple where one was sick
• Married couple where both were sick
• Family with sick father
• Family with sick mother
• Family with sick boy
• Family with sick girl
• Family with sick boy and girl
• Family with two sick girls
• Family with sick mother and one/to/three sick children
• Family where father had moved out before daughter got ill
• Family where father had moved out after son got ill

---

Observation 1:

There is a big gap between:
- The patient and the carers’ own experience of their illness and life situation, and

- the explanatory models they get presented for by health and social services

This gap has probably substantial consequences for the cooperation conditions between those affected and the services, the efficiency, treatment admission and social economics.

---

Observation 2:

The asymmetric power relation between what appears as

- on one side, an uncertain and unpredictable system which in lack of solid documentation about the illness appears as driven by attitudes and resisting and

- on the other side: carers and patients, often overwhelmed, scared, with pain and cognitive challenges — and dependent on the first for pain relief and basis of existence

---

Descriptions of the diagnosis

• The patients struggle to understand their diagnosis: Everything that’s otherwise good, isn’t when it comes to ME
• They are the same people as before, they like and want to do the same things, they are not depressed, but
• … everything that gave joy and energy before, they now experience result in a backlash and make them ill
• It takes a strikingly long time to really understand and internalise this
• This, often traumatic, internalising process is extended by a continuous opposite advice everywhere that “Activity never harmed anyone!”
• Several give advice based on no documentation. Even health care personell give a lot of unauthorised advice (verbally)
• In this long trial-and-error-phase many experience (sometimes irreversible) deterioration

---

 

[Kalliope]

Moved from Norway - CFS/ME Research Conference Nov. 25th-26th 2019

Here's an unofficial translation of some of the slides

----
Experiences and perspectives from meetings with public services among ME patients and their families: Preliminary findings

CFS/ME- research conference, November 2019 at the Norwegian Institute of Public Health

----

Tjenesten og MEg (The service and I) is:

• ...a cooperation between (the research institutions) Sintef and Fafo
• ...a social study, not a medical project
• ...funded through the BehovME-allocation from the Research Council of Norway
  
  
• a cooperation with other partners:
  DePaul University
  London School of Hygiene & Tropical Medicine
  The Norwegian Institute of Public Health
  user groups

---

The project

• Work package 1

Who are affected by ME, what services do they receive and which statistical association does the illness have with for instance socioeconomical indicators?

• Work package 2

The ME patients and carers experiences with public services as school, health and welfare.

• Work package 3

Prevalens and living conditions: Who receives the ME diagnoses, who fulfils DSQ's research criteria for ME?

---

Work package #2

• Question: Which experiences do patients and carers have with public services as school, health and welfare, and with the coordination between these?

• Perspective: Clean, undisturbed patient perspective
• Data: Variation in experiences and perspectives, not representativity
• Method: Qualitative interviews, in a broad assortment of households
• Unit: The family. We consider the whole family to be affected, and try to interview the families together, if the patient is able to do this
• Approach: Narratives with mnemo techniques (interview guide)

• Limitation: As we will follow patients over a few years, we have recruited among sick people, and not interviewed anyone who has recovered. Yet. But perhaps someone in the assortment will improve or recover before next interview.

---

Family constellations

• Single patient
• Female patient living part time at home and nursing home
• Female patient who had moved back with her parents
• Married/co-habitant couple where the female is sick
• Married/co-habitant couple where the male is sick
• Married gay couple where one was sick
• Married couple where both were sick
• Family with sick father
• Family with sick mother
• Family with sick boy
• Family with sick girl
• Family with sick boy and girl
• Family with two sick girls
• Family with sick mother and one/to/three sick children
• Family where father had moved out before daughter got ill
• Family where father had moved out after son got ill

---

Observation 1:

There is a big gap between:
- The patient and the carers’ own experience of their illness and life situation, and

- the explanatory models they get presented by from health and social services

This gap has probably substantial consequences for the cooperation conditions between those affected and the services, the efficiency, treatment admission and social economics.

---

Observation 2:

The asymmetric power relation between what appears as

- on one side, an uncertain and unpredictable system which in lack of solid documentation about the illness appears as driven by attitudes and resisting and

- on the other side: carers and patients, often overwhelmed, scared, with pain and cognitive challenges — and dependent on the first for pain relief and basis of existence

---

Descriptions of the diagnosis

• The patients struggle to understand their diagnosis: Everything that’s otherwise good, isn’t when it comes to ME
• They are the same people as before, they like and want to do the same things, they are not depressed, but
• … everything that gave joy and energy before, they now experience result in a backlash and make them ill
• It takes a strikingly long time to really understand and internalise this
• This, often traumatic, internalising process is extended by a continuous opposite advice everywhere that “Activity never harmed anyone!”
• Several give advice based on no documentation. Even health care personell give a lot of unauthorised advice (verbally)
• In this long trial-and-error-phase many experience (sometimes irreversible) deterioration

---

Stress for the carers
Always “on call”

• Single mother: Hard to work night duty after the daughter’s suicide attempt, but the municipality meant they were not in need for a specific grant for parents caring for very sick children (“Pleiepenger”)
• Father: “The first thing I though of in the car each morning was how I could get back home again as quickly as possible if needed”
• Mother: “It’s a bit hard to be at work when you know that the child can’t get to the bathroom by itself, can’t fetch a glass of water”
• Spouse: “I hear foolish people having opinions about ME. One feel it’s one’s duty to say: No, that’s not how it is! It’s very tiresome and makes one avoid social gatherings
• A family also had a child with cancer. Described the stress as gone within a day, because the system took all responsibility. When it came to ME they had to take all responsibility themselves.
• Many patients struggle with feelings of guilt for the partners who didn’t get the life they wanted

---

Shame and inflicting shame

• To ask for fundamental and necessary consideration to be made is seen as pathologising (light, sound, touch etc)
• "Using aids is just pathologising””
• Wheel chair? “You want to appear sick for your surroundings?”
• “Remember this is public money!”
• Membership in patient organisation feels like a source of hope for many, but is presented as pathologising
• Shame can lead into getting aids too late, while such aids could have prevented deterioration

“Since I’m ashamed over the illness, one won’t talk about it”
“(the diagnosis”) makes me look at myself as a weak human being”

---

A fundamental dilemma

Patients and carers learn by experience that they deteriorate from stress, cognitive and sensory strain. They have learned though repeated experience how they get sicker by different kinds of activities, exposure and demands.

Still crucial services as pain relief and welfare is conditional on exactly such activities, processes and demands they know lead to stress, suffering and systematically makes them worse.

---

“But I’ve been lucky..”

• To get sick so late

- by then I had gotten friends and colleagues who are sending me encouragement and good wishes
- because then I know what life can be like, my friend was only 14 when she got sick

- invers: I wish I had gotten sick later, then it would have been easier to understand and learn pacing

• to get housing loan before he started on welfare. Now we wouldn’t have gotten any loan
• to live in the city and can drive to everything
• to live in a country providing a financial security. It would have been dramatic if I’d lived in a developing country
• to have my parents.. Some have no one..
• thinking about single mothers and so on..
• to have a boat with a good bed. I can lie there and watch the sunset
  
  
• to have a child with cancer when (boy) got ill. Because then we had access to all the supportive services through her

 

[Snowdrop]

Moved from Norway - CFS/ME Research Conference Nov. 25th-26th 2019

@Kalliope Those are seriously good slides of information. Thanks for providing us with the info.

I do have a question and scanned for the answer so sorry if I missed it but I'm wondering now who was the target audience and how well attended was the conference?

Again, those slides were so well done I wonder if they might be presented sometime again elsewhere.

 

[Kalliope]

Moved from Norway - CFS/ME Research Conference Nov. 25th-26th 2019

@Kalliope Those are seriously good slides of information. Thanks for providing us with the info.

I do have a question and scanned for the answer so sorry if I missed it but I'm wondering now who was the target audience and how well attended was the conference?

Again, those slides were so well done I wonder if they might be presented sometime again elsewhere.

This was a conference for scientists, health care workers/students and patient advocates. Not extremely well attended.. I believe approximately 60-70 people were present.

It's nice that they already are sharing preliminary findings and I assume one can invite them to give the same lecture to other seminars/conferences.

The research organisations behind this project, Sintef and Fafo, are well respected, and I believe their final report will receive some attention when published (which will be in English, but I don't know when)

 

[Snowdrop]

Moved from Norway - CFS/ME Research Conference Nov. 25th-26th 2019

This was a conference for scientists, health care workers/students and patient advocates. Not extremely well attended.. I believe approximately 60-70 people were present.

It's nice that they already are sharing preliminary findings and I assume one can invite them to give the same lecture to other seminars/conferences.

The research organisations behind this project, Sintef and Fafo, are well respected, and I believe their final report will receive some attention when published (which will be in English, but I don't know when)

Thanks for your response. I hope the project findings get more wide spread attention over time.

 

[Kalliope]

The research project Tjenesten og MEg is among other examining ME patient's meeting with health services in Norway. They have performed 24 qualitative interviews with families affected by ME. They presented preliminary results at an ME conference back in November and have now written their first opinion piece.

We have so far concluded that a main cause of the level of conflict between ME sufferers and the system is the gap that exists between many sufferers' experiences of their own illness and the explanatory models they encounter with from the health and welfare systems. They simply feel that their narrative of illness plainly gets objectified as a manifestation of a kind of madness; the dysfunctional thought patterns. We believe resistance in such a situation would apply to many patient groups, it is basically very human to react when one's reality experience is met as a form of imagination.

ME-debatt i loop
google translation: ME debate in loop

 

[Hoopoe]

I don't like this article. It says that thinking of ME as purely a somatic illness is an extreme position. I think of it like that and I don't like being labelled an extremist, especially not by actual extremists.

One can tell this was written by psychologists or at least from their point of view.

Guess what, I still want nothing to do with these people, even if they attempt some form of reconciliation with this article.

 

[Trish]

I don't like this article. It says that thinking of ME as purely a somatic illness is an extreme position. I think of it like that and I don't like being labelled an extremist, especially not by actual extremists.

I agree. They seem to be trying to bring the two irreconcilable sides together and just producing a variety of BPS fudge.

 

[Esther12]

The research project Tjenesten og MEg is among other examining ME patient's meeting with health services in Norway. They have performed 24 qualitative interviews with families affected by ME. They presented preliminary results at an ME conference back in November and have now written their first opinion piece.

We have so far concluded that a main cause of the level of conflict between ME sufferers and the system is the gap that exists between many sufferers' experiences of their own illness and the explanatory models they encounter with from the health and welfare systems. They simply feel that their narrative of illness plainly gets objectified as a manifestation of a kind of madness; the dysfunctional thought patterns. We believe resistance in such a situation would apply to many patient groups, it is basically very human to react when one's reality experience is met as a form of imagination.

ME-debatt i loop
google translation: ME debate in loop

edit: I may have been too critical here - I'm planning to re-read the piece tomorrow. It does play into a few things that annoy/worry me.

To me, that was a bit of an annoying piece and illustrated how whenever the conflict surrounding ME/CFS is viewed in terms of 'psychological/physical' it ends up leading to the problems of bad behaviour by important and influential figures being ignored or overlooked. If patient concerns are allowed to be be viewed in terms of this narrative then it will make progress extremely difficult imo.

In that piece they seem to acknowledge that there often isn't a great division on that issue, but they still seem to present it as the central matter to be addressed.

I think it's a big mistake to focus on that issue without first assessing whether or not prominent medical figures have engaged in abuses of power by, for example, making misleading claims, failing to correct false claims, smearing critics, failing to properly declare COIs, etc.

The trouble is that some of the problems with the way patients are treated do seem to stem from views within medicine that lower standards of honesty and rigour are acceptable for patients classed as having mental health problems, so for patients who haven't been able to spend lots of time picking apart the individual strands that feed into the problems with how they are treated referring to ME/CFS being treated as a mental health problem can seem a useful short-hand. But that is so often interpreted in a way that leads to nothing much changing. If the models underlying CBT/GET were just changed, that wouldn't really improve anything. Actually, I suspect that it would make things even worse.

There are things about this that make me think that the researchers are well meaning rather than cynically trying to cover up problems, but I still suspect that the mentality within academia of being 'respectful' of colleagues is likely to mean that projects like this end up causing more harm than good by providing a cover for explaining away patient frustration.

edit: When writing this post I had forgotten/ignored that the article did raise concern about costly rehabilitation with a weak evidence base... that's not the sort of detailed criticism I'm after, but it is something, and that I forgot/ignored it no doubt reflects my own biases!

It says that thinking of ME as purely a somatic illness is an extreme position.

What does that even mean? If you're experiencing symptoms then surely that involves your mind no matter the physical cause. The symptoms of depression are surely affected by the physical functioning of an individual's brain. Those sorts of labels are so often just a distraction. 'Purely' somatic or psychological symptoms sound impossible to me, but I don't think that can be used (as some try to) to justify any particular claim about the way patients should be treated.

 

[Hoopoe]

Psychologists seem to think of illness as a set of symptoms (that includes mental ones).

I and presumably other patients think of illness as disease process, or perhaps one could say, cause of symptoms. So when a patient says that ME is not mental illness they just mean it's not being caused by thoughts and emotions.

 

[andypants]

I don't like this article. It says that thinking of ME as purely a somatic illness is an extreme position. I think of it like that and I don't like being labelled an extremist, especially not by actual extremists.

I don’t think that came across right in the translation, they use something closer to poles (on a spectrum) in the article. Still didn’t like the article, as others mention they try the typical “let’s all find common ground in the middle and then no one needs to argue” point without actually having looked at the underlying research beyond talking to some people they assume know what they are talking about.

I wish they would stick to their own research, that on its own is very compelling. I appreciate the point they made about costly rehab stays being recommended without any evidence it will benefit patients, I have been waiting for someone to say that for years.

 

[Esther12]

Psychologists seem to think of illness as a set of symptoms (that includes mental ones).

I and presumably other patients think of illness as disease process, or perhaps one could say, cause of symptoms.

But if you're defining illnesses as disease processes then isn't it a truism that all illnesses are "purely physical"? In which case, saying that you think of ME/CFS as purely somatic seems likely to be misunderstood imo - which is partly my concern about this whole topic. It so often ends up just being about how language is used rather than any of the important problems that surround ME/CFS.

I appreciate the point they made about costly rehab stays being recommended without any evidence it will benefit patients, I have been waiting for someone to say that for years.

I have to admit that I rather skimmeded over that - I so often read pieces looking for problems that I can forget about the positive points that they make.

 

[Hoopoe]

But if you're defining illnesses as disease processes then isn't it a truism that all illnesses are "purely physical"?

In multiple sclerosis what I would call disease process is the brain lesions and demyelinization. Which also have their own upstream causes which haven't been found so far. Even if the exact chain of causation is unclear, it is conceptually easy to differentiate between illness as set of symptoms and illness as consequence of something going wrong.

I think ME/CFS involves a specific problem somewhere that causes all sorts of downstream symptoms. That specific problem is not psychological in the sense that it is not thoughts or feelings and cannot be meaningfully changed through them.

 

[rvallee]

I don't like this article. It says that thinking of ME as purely a somatic illness is an extreme position. I think of it like that and I don't like being labelled an extremist, especially not by actual extremists.

One can tell this was written by psychologists or at least from their point of view.

Guess what, I still want nothing to do with these people, even if they attempt some form of reconciliation with this article.

Yeah it's the usual waffle that is actually one of the main obstacles, the one that pretends that this split is of any importance when in fact it's a superflous debate that should be entirely detached from how we approach the solution because it is largely irrelevant to our quality of life. I couldn't care less about this philosophical debate and frankly it's criminal neglect to let such an irrelevant issue completely destroy health care for tens of millions.

There is simply zero mental causative component to this disease, it is an entirely superflous factor that can be shelved for a few decades. I am suspicious of the authors' claim that there is universal agreement among patients, it sounds a lot like their own perspective, putting words in people's mouths and getting away with it because of statutory authority.

And of course there are people who promote the belief that it is 100% psychological, they are the most influentual ones in fact. It is their extremist positions that have caused research in this disease to be stigmatized, even mocked. They often loudly repeat their opinion that any research on this disease is a waste of time and everything should be framed in psychosomatic terms. So I have no idea where the authors got this idea that no one promotes this position, it literally is the damn status quo and has been for decades. I guess it's because reality sounds so damn mediocre and incompetent.

At least they seem to properly understand that the core problem is of a complete disconnect between patient experience and how that experience is misrepresented by medical authorities, more blatantly so by those who have been the most aggressive promoters of the psychosomatic model. Every other problem derives from this, misrepresenting a disease will always end in failure at addressing it, this is self-evident and nothing else matters to get things righted, as long as misrepresentation overrules objective reality we cannot make any progress.

The simplest framing, I think, is that the status quo is equivalent to ME what HIV deniers are to AIDS. There is simply no possibility of progress from a position that believes with absolute conviction, willing to inflict the suffering and death of millions, that the real explanation is the only one that is impossible and must be rejected aggressively. This is a more accurate representation of the split, it is not about philosophy, it is blatant disagreement over the most basic facts.

 

[Esther12]

In multiple sclerosis what I would call disease process is the brain lesions and demyelinization. Which also have their own upstream causes which haven't been found so far. Even if the exact chain of causation is unclear, it is conceptually easy to differentiate between illness as set of symptoms and illness as consequence of something going wrong.

I think ME/CFS involves a specific problem somewhere that causes all sorts of downstream symptoms. That specific problem is not psychological in the sense that it is not thoughts or feelings and cannot be meaningfully changed through them.

Surely there'd be meaningful change to almost any illness if someone was to switch from responding in the most unreasonable and self-destructive way to some optimised cognitive perfection. Equally, for many definitive 'psychological' conditions there will be neurological aspects that can't be altered by the individual's decisions. Particularly for a condition like ME/CFS, where so much is unknown and it seems quite possible that it's a diagnosis that will include people with a range of different problems, talking about it being 'purely' psychological or physical seems like a bad idea imo.

 

[Hoopoe]

To put this into perspective, this is (I strongly suspect) psychologists explaining a controversy to the public that involves disagreement between psychologists and patients. Even with the best of intentions this likely to be problematic.

 

[Hoopoe]

Surely there'd be meaningful change to almost any illness if someone was to switch from responding in the most unreasonable and self-destructive way to some optimised cognitive perfection. Equally, for many definitive 'psychological' conditions there will be neurological aspects that can't be altered by the individual's decisions. Particularly for a condition like ME/CFS, where so much is unknown and it seems quite possible that it's a diagnosis that will include people with a range of different problems, talking about it being 'purely' psychological or physical seems like a bad idea imo.

I think the counterargument for your proposed theoretical role of psychological processes is precisely the lack of effect of psychological therapies (as well as a whole lot of experience of actually having the illness and seeing how and in response to what it changes or doesn't change).

If psychological process had any sort of important role then psychotherapy would obtain better effects than what would be expected from a sham treatment. Even if you can theoretically draw up all sorts of connections between psyche and illness, for practical purposes, their role appears to be zero.

(edited for more clarity)

 

[Esther12]

I think the counterargument for your theoretical role is precisely the lack of effect of psychological therapies (as well as a whole lot of experience of actually having the illness and seeing how and in response to what it changes or doesn't change).

If psychological process had any sort of important role they would obtain more than what would be expected from a sham treatment. For practical purposes, their role appears to be zero.

Given how rubbish and unethical many of those devising/providing psychological treatments for ME/CFS have shown themselves to be, I don't think the lack of benefit they provide to patients shows us much about that!