Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care 2023 Sommerfelt et al

Abstract

There is a striking lack of systematic knowledge regarding the symptom burden, capacity for activities of daily living, and supportive measures for the most severely ill ME/CFS patients. The present study seeks to address this through a national, Internet-based survey targeting patients with severe and very severe ME/CFS and their carers. Responses from 491 patients were included, with 444 having severe and 47 very severe ME/CFS with the classification based on the best estimate from patient responses. In addition, 95 respondents were reclassified from patients’ own classification to moderate and included for comparison.

The onset was before 15 years of age for 45% in the very severe and 32% in the severe group. Disease duration was more than 15 years for 19% in the very severe and 27% in the severe group. Patient symptom burden was extensive. The most severely affected were totally bedridden, unable to talk, and experienced dramatic worsening of symptoms after minimal activity or sensory stimuli.

Care and assistance from healthcare and social services were often described as insufficient or inadequate, often worsening the symptom load and burden of care. A substantial lack of disease knowledge among healthcare providers in general was reported. Yet approximately 60% in the severe and very severe groups found services provided by occupational therapists and family doctors (general practitioners) helpful, while a smaller proportion experienced appropriate help from other health personnel groups. This indicates that help and support are highly needed and possible to provide. On the other hand, this must be approached carefully, as a substantial number of patients experienced deterioration from contact with healthcare personnel.

Family carers described an extensive burden of care with often inadequate help from healthcare providers or municipal authorities. Patient care by family members of very severe ME/CFS patients constituted more than 40 h a week for 71% of this patient group. The carers described a large negative impact on their work and financial situation, and on their mental wellbeing.

We conclude that childhood onset was common, burden of disease was extensive, and support from responsible societal health and social support providers was commonly grossly inadequate.

Open access, https://www.mdpi.com/2077-0383/12/4/1487

 

I am very happy to see this published in a peer reviewed journal.

We did the survey in 2018, and published a large report on the Norwegian ME Association webiste in 2020. However, we have had problems getting Norwegian Health authoritites to listen, as they say it wasn't "proper", published, research. Well, now it is published "properly". Will the health authorities listen now?

This paper only presents the quantitative findings. There are also thousands of open-ended answers, and we are hoping to write something about them too, later.

 

Well done for getting this "properly" published. Nicely presented and easy to read, too, leaving no excuses to not read it in full, understand the implications and act on them. No guarantee it'll change anything for pwME but the authorities can't say they weren't "properly" informed.

One question about the Activities of Daily Living Score @trudeschei. Did you define what a 'short walk' is? Given its high weighting for calculating the ADLS the answer to this question alone could easily be the difference between moderate and severe.

Example: two pwME, both of whom collected a total of 70 points on the other questions and both of them are able to walk 50m. So identical level of current severity but p1 was previously very severe and p2 was previously mild-moderate so their reference frames are now very different.

P1 now deems walking 10m constitutes a short walk and they answer they do this every day. This counts for 20 points, giving then a total of 90 points and putting them in the moderate category.

P2 now deems 100m constitutes a short walk and they answer they never do this. This counts for 0 points, leaving their total score at 70 points and putting them in the severe category.

 

From the discussion section:

"For the typical patient, the most debilitating symptom was fatigue, followed by muscular and joint pain, cognitive symptoms (brain fog), sleep disorder, and sensory intolerance. Close to half of those with very severe disease had onset before 15 years of age. Adequate support, understanding, and trust were often lacking from healthcare providers. Among health personnel, local family doctors (general practitioners) and occupational therapists were most often valued by patients. In general, health personnel were in some cases helpful, in some cases of no help, and in some cases contributed to patient deterioration. Close family members where extensively involved in patients’ day-to-day care, resulting in a severe burden impacting their health, social life, and economy."​

 

That is a good question.
In Norwegian, the phrase used was "gå en kort tur". The word "tur" strongly implies that the walking takes place outdoors and is for pleasure - which again implies that the patient is able to get up, get dressed and walk for enjoyment. There is no phrase in English that translates directly - perhaps "go for a stroll" is closer?

 

A good article today about this paper from a news site on research. The article has comments from the leader of the National Competence center for CFS/ME (known for their biopsychosocial approach) who says ME patients are right in that they are not being taken seriously, and that they are met with a health care system who doesn't understand them and who rejects them.

Mange alvorlig ME-syke er veldig dårlige og opplever å få lite hjelp
google translation: Many severe ME sufferers are very sick and receive little help

 

This great article about the study has now been translated to English and published at ScienceNorway

Many ME/CFS patients are severely ill and receive inadequate support

quote:
The survey results paint a rather bleak picture.

Many of the most seriously ill patients had developed ME/CFS before they turned 15, and many in both groups had been ill for a long time. The majority answered that the illness varied over time or became progressively worse. None of the very severely ill patients, and only a small percent of the severely ill, responded that their condition improved.

 

An good article by one of the paper's authors Trude Schei on Health Rising:

Having Severe ME/CFS: A Report From Norway - Health Rising



(Apart from this being an incredibly important topic to investigate and record & spread good info on, I also quite like the figures in general:
I think the 'daily capacity' and 'tolerance' points combined give a good rough outline of how a housebound person is doing at that moment and can also be used for e.g. physician appointment -if you have a good physician- and tracking progress/deterioration. Asking about symptoms is important, but I find it difficult to assess their frequency/level, as I usually ignore them unless it's really bad.)