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(In 2021, Amber outlined the ways we are failing those with very severe ME/CFS in a blog on Health Rising. In this blog, Trude Schei reports on the results of a rare survey that documented the situation they face in Norway.)

Background

Norwegian ME Association

The Norwegian ME Association completed a rare survey of severely ill ME patients.

In 2018, the Norwegian ME Association undertook a large survey of severely ill ME patients. We wanted to look at symptom burden and disease severity, access to help and care, and how the carers experienced their condition. The answers we received were shocking, showing both how serious the disease is, how few receive adequate care and help, and the enormous burden of care for carers. We published a large report in Norwegian in 2020, and in 2023, we published an English Language paper in the Journal of Clinical Medicine.

In this blog, I will write about this paper, a little about the larger report, and try to give some background about healthcare in Norway.

Norwegian ME Severely Ill Survey

The Norwegian ME Association documented the situation facing the most vulnerable among us and their caregivers.

ME/CFS is a severe disease, even in its mildest form, but a portion of patients have a severe form of the disease. The disease greatly restricts these patients’ lives. They are largely unable to leave their homes, and they certainly do not participate in studies where patients have to travel to a clinic. For many of them, a visitor in their home would be too much.

For this reason, they are mostly invisible, and we know very little about them. If there is little research done on ME/CFS compared to disease burden and impact on quality on life, this is even more so when it comes to severe/very severe ME/CFS.

We do not know how many ME/CFS patients have severe disease. It is often claimed that 25% of ME patients have severe ME/CFS, but I have not been able to track down the source of this figure, nor do I know how “severe” was defined, or how patients were identified. It is problematic that we do not have an international consensus on how to define “severe”.

This makes it difficult to know whether different studies are talking about the same group of patients. E.g., the new NICE guidelines define “severe” as “housebound”, while the ICC criteria says “mostly bedbound”. In another Norwegian survey with 5,822 respondents, 57% said they were “mostly housebound”, 15% said they were either “mostly bedbound”, and 1% were “bedbound and in need of care”.

Since this was a Norwegian survey, we used the definition in the Norwegian guidelines for ME/CFS, which are again based on the ICC criteria. Severe is defined as “mostly bedbound” and “very severe” as “bedbound and in need of care”.

The Survey

Of the respondents 47 were classified as “very severe”, 444 as “severe” and 95 as “severe-moderate”.

Of the respondents, 47 were classified as “very severe”, 444 as “severe” and 95 as “severe-moderate”.

The first step in the survey was an invitation to patients and carers to tell us about areas of concern. We received more than 80 open-ended responses, and a quick summary of what they said is “everything”. However, some areas stood out, e.g., home visits from doctors, symptom relief, the role of carers, and help for children of the severely ill. Based on this pilot study, we decided to focus on disease burden, the burden of care and access to, and quality of, health care.

The resulting survey had more than 90 questions, with a special section for carers, and another section for patients with children. Since we knew we could not possibly cover all possible scenarios with structured questions, we asked respondents to give us more information in open-ended answers. In the current paper, we have only included the structured questions, but we hope to write a second paper based on the several thousand open-ended answers.

The survey was advertised through social media and emails to members. The Norwegian ME Association had a membership of around 5,000 at the time of the survey. It also hosts a number of moderated peer-to-peer support groups on Facebook, with a total membership of around 8,000, and we also used the groups to inform about the survey. The survey was online, anonymous, and limited to one answer per IP address.

The survey was open from 19 July 2018 to 1 October 2018. and we received 586 complete responses. Carers could answer on behalf of patients who were too ill. There were no time restrictions on answering, and respondents could answer one question at a time. We know that many patients used many weeks to answer, and used valuable energy to do so. We are in awe of their willingness to tell us about their experiences, and very, very grateful!

Based on questions about activities of daily living, we classified 47 as “very severe”, 444 as “severe” and 95 as “severe-moderate”. This last group has a huge symptom burden, and are very ill, but not bedbound. We retained them as a comparison group.

Responses

The responses were shocking.

Many of the respondents were young or had become ill when young. Those who had become ill as teenagers or younger were overrepresented among the very severe patients. Most patients said they were getting steadily worse or experienced great fluctuations in the disease, but very few told of improvement. The symptom burden was enormous, and the level of function very, very low. Among the 47 very severely ill, many could not turn themselves in bed or communicate. Pain, nausea, fatigue, and brain fog were constant companions. Despite this, very few received adequate help or care from the healthcare system or from local authorities.

Severely ill ME/CFS Functional Capacity

Capacity for daily activities: 0 = never, 1 = between once or twice a year, 2 = between once a week and once in two months, 3 = several times each week, and 4 = every day.

Norway has universal healthcare, and we like to pride ourselves that we have one of the best healthcare systems in the world. Local authorities have a duty to provide practical help and health care in the home when it is necessary, and we have a very good welfare system. All these institutions often failed the severely ill ME patients and their carers, though there were some instances of good care.

Many patients had chosen to say “no, thank you” to help in the home from local authorities. The nurses and other helpers who came to the patient’s home typically had no knowledge about ME/CFS, light and sound hypersensitivity, or how vulnerable the patients were. The open-ended responses told about nurses who, meaning well, tried to open curtains and start conversations. Helpers did not read instructions but came into the patient’s room to ask questions instead, wearing perfume and turning on lights. This caused a worsening of symptoms for the patients, and the “help” was actually harmful.

Sensory stimuli severely ill

Sensory stimuli were particularly poorly tolerated by the severely ill: Among the 47 respondents with very severe ME/CFS, 36 (77%) seldom (six) or never (30) tolerated indoor lighting, 28 (60%) seldom or never tolerated the sound of normal speech, and 19 (40%) seldom or never tolerated touch.

This left a large burden of care on the patient’s family. Of the 47 very severe patients, all but one needed round-the-clock care, and most carers said they spent more than 40 hours a week on care, though this may underestimate the hours used. We were, in fact, criticized for having “40 hours” as the highest option, as many respondents wrote in the comments that they used far more time on care. We chose 40 h/week since it equals a full-time job in Norway.

The carers were worn out and desperate and felt a huge impact on their own health, financial situation, and social life. One carer described it as an “ongoing crisis”, another as “eternal vigilance, never knowing when the next crisis comes”.

caregivers

It wasn’t just the ME patients that were affected. With adequate institutional support lacking, caregivers reported being impacted in many ways.

Children of the severely ill did not receive adequate help, either. Only 27% of children had received counseling or other help, even if it is required by law. One mother wrote: “I hear the children in the living room, but I lie in the dark, too ill to see them, it is agony for a mother’s heart”.

68% of severe and 72% of very severe felt that they did not receive adequate health care. Only 1/3 felt that they got adequate help with symptoms like nausea, pain, and sleep problems. The patients were most satisfied with their general practitioner (GP/family doctor), occupational therapists, and physiotherapists, and least happy with specialized health care. We have seen the same pattern in other surveys. We believe the reason is that those who follow patients over time get a better understanding of the disease, and comprehend both how serious it is, and that it is very, very real.

Going forward

Blind man and the elephant

The severely ill are mostly hidden from our sight. This survey helped us see them a bit better.

We received several thousand open-ended replies, but this paper is only about the structured questions. We are hoping to write a paper about the open-ended questions, too. The responses were excruciating reading, with despair and hopelessness screaming from every line.

Many answers describe what can only be termed abuse from hospitals, doctors, and local authorities. There were patients who could not walk, but when in the hospital were not offered a wheelchair to go to the toilet, because the nurses said it was good for her to “try”.

The Gist (by Cort)

  • Over almost 3 months in  2018, the Norwegian ME Association sent out a severe and very severely ill survey to its 5,000 members and  8,000 members of its Facebook page.
  • The survey contained more than 90 questions and included sections focused on caregivers and the children of the severely ill. 
  • Based on the results of daily living questions, they classified 47 people as “very severe” (bedbound and in need of care), 444 as “severe” (mostly bedbound),  and 95 as “severe-moderate” (high symptom burden but not bedbound). 
  • Many of the severely ill had come down with the disease while they were young, and people who had become ill as teenagers or younger were overrepresented among the very severe patients. 
  • Among the 47 very severely ill, many could not turn themselves in bed or communicate. Pain, nausea, fatigue, and brain fog were constant companions.
  • With local health authorities sometimes causing more harm than good by not acting appropriately, many of the severely ill have chosen not to ask for their help. 
  • The caregivers faced an immense burden. Of the 47 very severe patients, all but one needed round-the-clock care, and most caregivers said they spent more than 40 hours a week on care. Income, work, and social life were all often significantly affected. 
  • Problems with sensory stimuli were particularly apparent. Only a few of the very severely ill (23%) could even withstand indoor lighting. Over half seldom or never tolerated the sound of normal speech, and 40% similarly could not tolerate touch.
  • On the positive side, there were responses that show that it is possible to give good care and to provide carers and patients with a feeling of security. The key is to listen to the patient and to the carers and support them. 

There was the parent with severe ME/CFS, who was missing out on her children’s childhood, and the patient whose cancer was not caught in time since any new symptoms were seen as “just more ME/CFS”. There were carers who were exhausted, and close to giving up, but somehow manage to go on. It is hard not to cry.

On the positive side, there were responses that show that it is possible to give good care and to provide carers and patients with a feeling of security. The key is to listen to the patient and to the carers. There is no research today on what constitutes best practice when it comes to severely ill ME/CFS patients, and in that absence, carers and patients are the experts. It is also important to provide symptom relief – but most important is respect, humility, and empathy.

However, not all patients have a family, so there is an urgent need for specially adapted care institutions. The Norwegian ME Association has cooperated with a non-profit diaconal foundation, and there are currently 12 spaces at Røysumtunet. We see that when given the right conditions, some, but not all, patients improve a little. When you are as ill as these patients are, a little is a lot, and the importance for the patient is enormous.

I have heard many presenters say how confusing ME/CFS is, and use the story of the blind, wise, men, and the elephant. How you describe the elephant depends on which part you touch. I would like to say: Talk to the elephant! It knows a lot about itself. In the absence of research, basing care on patient experience is common sense.

We are hoping that our report and the paper will contribute to shed light on the plight of the severely ill, and also to better care for this severely neglected group.

The Authors

  • Kristian Sommerfelt is professor emeritus at the University in Bergen in Norway. He is a pediatrician with long experience with ME/CFS.
  • Arild Angelsen is professor of economics at the University of Life Sciences in Norway. He has ME/CFS patients in his family and is a board member in the Norwegian ME Association. He has worked on several large patient surveys in Norway and internationally.
  • Trude Schei is deputy CEO of the Norwegian ME Association. She is an architect by training but has had ME/CFS since 1999. She has worked on several large patient surveys in Norway and internationally.

More on the Severely Ill

We are Failing People with Very Severe ME/CFS

What is Whitney Dafoe’s Extremely Severe ME/CFS Story Telling Us?

 

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