Trial Report The most severely ill patients with ME/CFS in Denmark, 2024, la cour

Kalliope

Kalliope

Senior Member (Voting Rights)
Moderation note:
Abstract and link to the English version are in this later post - link
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Yesterday the Danish Clinic Mehlsen by professor and psychologist Peter la Cour, PhD and Susanne la Cour, GP published a report based on home visits and interviews with 19 severe ME patients and their family/carers.

The main results are (translated by me):

1. There are no health services for these patients in Denmark. The most severe patients are not able to get to the regional clinics and there are no suitable hospital places for this patient group. Only a few doctors do home visits and many patients are in lack of their own GP.

2. Case management is often based on lack of knowledge or wrong knowledge. This leads to distrust and ill will and necessary help is not provided for or is insufficient. There are great variations in the municipalities when it comes to the care for the most severe ME patients.

The report documents a severe betrayal towards the patient group. Their situation must be regarded as unworthy of a welfare state. The report calls for strongly needed political and social initiatives.


https://peterlacour.dk/wp-content/uploads/De-svaerest-ME-syge-i-Danmark.-Rapport.pdf
 
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Some translated pieces from the first half of the report:

The home visits were done between January and April 2022.

All participants had been diagnosed with ME by a specialist according to the consensus criteria.

The home visits lasted between 2 - 4 hours. When possible, the patient themselves were interviewed for as long as they could manage, and the rest of the time was with the family/carers.

Sociodemography

The participants had been sick on average for 9,8 years (between 1 year and 25 years). 17 women, 2 men. Age between 26-49 years. 16 were bed bound.
3 participants were in a better period and able to be out of be 5-12 hours a day. 3 were not able to leave their bed at all.
2 were living in an institution. The care for those living at home, was provided for by family (from 0.5 - 8 hours a day).
7 were not able to feed themselves.

The primary and often only carers for 11 of the participants were one or both parents. 7 were cared for by their partner and 1 received care from the local municipality, who didn't have any training on ME.

9 participants had received home visits from a doctor.

Some local municipalities had been confrontational towards the families, others were completely passive. Only one municipality had learned about the disease and the patient's situation.

Health care

There is no health care for the most severe patients. ME is considered a functional disorder, a category that doesn't exist in any other countries.

Several of the participants had been "fired" by their own doctor, who didn't want them as patients.

In 3 cases the family got reported to the authorities for abuse, and without cause accused of the disease being due to either incest or Münchausen by Proxy.

Only 3 participants talked about their doctor in a positive way. But apart from one exception, the other doctors were described as lacking knowledge about ME and what can be done to help.

The Danish Health Authorities' recommendations when it comes to "functional disorders" can not be applied in any useful ways by the involved health care workers. There seems to be a system failure. It's first and foremost due to ignorance about the disease, but also of wide spread ill will towards it. The powerlessness of the doctor may often lead to the patients being blamed for being ill.
 
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Some translated pieces from the second half of the report:

Social services

10 of the 19 participants didn't get any help at all regarding care from their municipality. Only 2 with need of 24 hour care were fully financially covered. The relationships with the municipalities were by almost everyone described with battle-metaphors. Several of the participants had completely given up, and instead gone "under the radar" and just managed things themselves instead for receiving help.

The participants expressed lack of trust to the social services's will and ability to help. The necessary help was given on conditions that led to deterioration.
But there were large differences between the municipalities.

Hospitals and institutions

Almost everyone told spontaneously of negative experiences with hospitals. There was no knowledge about the disease and no respect regarding taking light and sound sensibility into consideration.

"The senior doctor behaved like a child. He threw the medical journal onto the table and shouted "ME DOES NOT EXIST!"

The situation of the carers
They are often left to themselves in their carer situation, where all the time spent and the duty to be available in itself contributes to becoming isolated. The patients' dependency on only one or two carers makes the situation very vulnerable, should anything happen to the carer. Some of the participants had no backup plan.

The carers saw no other alternative than to stay in the carer-relation.

"It's our daughter!"

"I can carry this because I shall carry this"

Several of the carers said they had developed different symptoms themselves.

A clear need of increased effort
The two participants that lived on an institution were unfortunately not positive models for care from the public health. One had deteriorated a lot and was almost not able to speak. In the other case it was the parent who was the carer, as the institution wasn't rigged for personal care, but for social pedagogical treatment.

The authors suggest systematic education of personell and institutions about ME and for the municipalities to increase offers like user controlled personal assistance. There is need of positive models and examples of things working out, so that municipalities can learn from each other.

There is a huge lack of knowledge and a lot of prejudice about ME. There is need of a place with competence about severe ME, for doctors, institutions and municipalities to consult.

There is also need for qualified home visits for patients with severe ME.

Lack of national guidelines

The authors mention specifically the NICE guidelines. Say there is no "authorised" knowledge about ME in Danish.
 
Kalliope said:
There is no health care for the most severe patients. ME is considered a functional disorder, a category that doesn't exist in any other countries.

Several of the participants had been "fired" by their own doctor, who didn't want them as patients.

In 3 cases the family got reported to the authorities for abuse, and without cause accused of the disease being due to either incest or Münchausen by Proxy.

Only 3 participants talked about their doctor in a positive way. But apart from one exception, the other doctors were described as lacking knowledge about ME and what can be done to help.

The Danish Health Authorities' recommendations when it comes to "functional disorders" can not be applied in any useful ways by the involved health care workers. There seems to be a system failure. It's first and foremost due to ignorance about the disease, but also of wide spread ill will towards it. The powerlessness of the doctor may often lead to the patients being blamed for being ill.
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Can't help but think that anyone working in that system reading this will think "yup, working as intended, excellent".

This system is functioning as designed, the product of deliberate decisions made by people who will not back down from them. Confronting those people with the horror they are satisfied with will not sway them when it's working exactly as intended.

At least this documents the horror and will play a role in future compensations, but this is like going to the chief of police with reports of corruption that place... the chief of police as the ringleader. Alongside the district prosecutor and judge, who are in on it.

One thing about healthcare is that there is no fix for systemic failure, the profession is unable to imagine itself being wrong about anything. If they're doing something, it can only be good. If you point out errors in that system, they genuinely don't care, they know better and we don't know anything.

Medicine is too stuck in the past, has kept cultural baggage that almost every other part of society has left. I just read a thread on the long haulers subreddit from a PhD who was trying to describe how to approach doctors, how to speak their language and get them to listen when they are uncomfortable admitting they don't know and how failing is a personal challenge to their skills that they can't handle.

And all I can think of is that it's seriously blatant immaturity that can only fixed by growing the hell up out of this entitled emperor phase. Frankly, this is about as close as it gets to self-efficacy, and healthcare is massively lacking in it.
 
It is so important that research like this is undertaken and widely discussed.

I think most medical professionals and researchers want to do the right thing by their patients, no matter how misguided their beliefs about ME might be. However it is far easier to sustain delusional beliefs about the nature of ME if you can avoid any contact with or insight into severe ME.

I suspect even the Wesselys or the Crawleys of this world would have very a different understanding of the condition if their starting point had been a full caseload of people with severe ME.
 
We are just one patient and we are swimming against their training, decades of experience and papers they have read and in this case the definition of the condition as something they can't even translate into anything useful. What the heck is a Functional Disorder anyway?! Sure sounds like something a patient might do to themselves....

There is just no way to undo that sort of damage to their understanding of these types of conditions, the only place that can do that is medicine itself. Many will hold onto these views until they retire. You don't get to this 99% systemic prejudice without it being trained in and reinforced repeatedly. There is no thing an ME/CFS patient can say or do that will change that and its why I remain steadfast on believing that once the outreach program to ask specialists to change (and presumably to inform GPs) is completed they will have to decide what they do with the ones that refuse to change, there will be many.
 
dave30th said:
Who are Peter and Susanne la Cour in this debate?
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Peter la Cour has background among other as Leader of Knowledge Center for functional diseases in Copenhagen. CV in English here

I don't know how he got interested in ME, but he has written several great articles where he's been very critical against classifying ME as a functional disorder and he seems to have a deep understanding of the situation for the patient group.

He also recently published a book on persistent unexplained physiological symptoms.

I don't know who Susanne la Cour is.
 
This study has now also been published in English, in the journal Cogent Public Health:

The most severely ill patients with ME/CFS in Denmark, 2024, Peter la Cour

https://www.tandfonline.com/doi/full/10.1080/27707571.2024.2359958

Open access
Abstract
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A subset of patients suffering from ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome) are severely ill, bedridden, and dependent on personal care. This study aims to describe the medical and social conditions of the most severely ill patients with ME/CFS in Denmark and the situation of their caregivers. Qualitative data were collected during 19 home visits to severely ill patients in Denmark. The patients interviewed were characterised by extremely low physical and mental functioning and longstanding illness. Relative to their dire condition, the participants received very little help from medical professionals and health services such as institutions and hospitals. There was an overall negative interaction with psychiatric interventions, and the relations between patients and the health system were generally characterised by mutual distrust. Social services were often dismissed, and obtaining the services was often described as more of a burden than a benefit. In conclusion, the most severely ill patients with ME/CFS and their caregivers must be characterised as a systematically neglected patient group not comparable to any other similarly ill group.

IMPACT STATEMENT

The most severely ill patients with ME/CFS are bedbound and are completely dependent on external care. Relative to their dire condition, the participants in this study received very little help from medical professionals and health services as well as social services. Caregivers were mainly family members. The most severely ill patients with ME/CFS and their caregivers must be characterised as a systematically neglected patient group not comparable to any other similarly ill group.
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Free full text:
https://www.tandfonline.com/doi/full/10.1080/27707571.2024.2359958

Health Services
The most severely ill patients with ME/CFS in Denmark
Peter la Cour

Article: 2359958 | Received 29 Nov 2023, Accepted 22 May 2024, Published online: 05 Jun 2024

In this article
Abstract

A subset of patients suffering from ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome) are severely ill, bedridden, and dependent on personal care.

This study aims to describe the medical and social conditions of the most severely ill patients with ME/CFS in Denmark and the situation of their caregivers.

Qualitative data were collected during 19 home visits to severely ill patients in Denmark.

The patients interviewed were characterised by extremely low physical and mental functioning and longstanding illness.

Relative to their dire condition, the participants received very little help from medical professionals and health services such as institutions and hospitals.

There was an overall negative interaction with psychiatric interventions, and the relations between patients and the health system were generally characterised by mutual distrust.

Social services were often dismissed, and obtaining the services was often described as more of a burden than a benefit.

In conclusion, the most severely ill patients with ME/CFS and their caregivers must be characterised as a systematically neglected patient group not comparable to any other similarly ill group.

IMPACT STATEMENT

The most severely ill patients with ME/CFS are bedbound and are completely dependent on external care.

Relative to their dire condition, the participants in this study received very little help from medical professionals and health services as well as social services.

Caregivers were mainly family members.

The most severely ill patients with ME/CFS and their caregivers must be characterised as a systematically neglected patient group not comparable to any other similarly ill group.

https://twitter.com/user/status/1799077694187147296
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alex3619 said:
Their conclusion would not be a surprise to many of us here, particularly those who have been sick for a long time.
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Neither is the fact that we only hear about those who do have support, and their life is still a wretched nightmare. Those who don't ever have support, those who don't have family to support them anymore because they died, since it's usually parents, we can't even hear from them, because no one speaks for them.

So this is really about the most fortunate of the most severely ill patients, and it's still a picture of willful negligence, a life of torture. Some of the worst that humanity can manage, all the usual flaws failing in such perfect ways that there is no meaningful way to tell this apart from malicious cruelty.
 
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