Masters thesis in Norwegian with English summary https://brage.inn.no/inn-xmlui/bitstream/handle/11250/3138625/no.inn:inspera:224834835:91517292.pdf?sequence=1&isAllowed=y ME/CFS - Helserelatert livskvalitet ME/CFS - Health-related quality of life Kandidatnr: 22 - Mats Huseby Fakultet for Helse- og sosialfag Masteroppgave i Master i psykisk helsearbeid Studieprogram: Master psykisk helsearbeid, innlevering mai 2024 Antall ord: 23 993 ekskl. forside, referanser, noter, tabeller/figurer og vedlegg Sammendrag på norsk Myalgic Encephalomyelitis/Chronic Fatigue Syndrom (ME/CFS) er en kompleks, kronisk medisinsk tilstand som rammer mange av kroppens systemer og dens patologi er fortsatt under undersøkelse. Tidligere forskning har pekt på at helserelatert livskvalitet er svært lav for denne gruppen. Forskningsprosjektet Tjenesten og MEg har stilt datamateriale fra en større tverrsnittsstudie til rådighet for denne oppgaven, herunder det standardiserte spørreskjemaet Short Form Health Survey (SF-36) som ser på helserelatert livskvalitet. Utvalget består av de som har fått stilt ME-diagnose hos fastlege og/eller spesialist (n=581). Funn i utvalget, helserelatert livskvalitet målt ved SF-36, ble sammenlignet med normalbefolkningen, andre sykdomsgrupper og tidligere ME-studier. Det ble også søkt etter faktorer som kunne forklare variasjon i helserelatert livskvalitet i utvalget. Helserelatert livskvalitet for ME-syke i utvalget er signifikant og betydelig lavere enn hos normalbefolkningen. Fysisk helserelatert livskvalitet er signifikant lavere enn for de 18 kroniske sykdomsgruppene det ble sammenlignet med. Mental helserelatert livskvalitet viser et mer sammensatt bilde. For undergruppene vitalitet (VT) og sosial funksjon (SF) er den signifikant lavere for de ME-syke. For undergruppene sosial rolle funksjon (RE) og mental helse generelt (MH) har flere andre sykdomsgrupper tilsvarende eller dårligere skår. Sammenlignet med tidligere ME-undersøkelser har utvalget lavere fysisk helserelatert livskvalitet og noe høyere mental helserelatert livskvalitet. Dataene bekrefter imidlertid det overordnede mønsteret i tidligere undersøkelser som viser svært lav fysisk helserelatert livskvalitet, herunder spesielt lav fysisk rollefunksjon (RF) og til dels generell helse (GH). Det samme gjelder lav skår på vitalitet (VT) og sosialt liv (SF). De ME-syke i utvalget ser sin nedsatte arbeidsevne/begrensning i aktivitet som et resultat av dårlig fysisk helse (RF), og ikke på grunn av følelsesmessige problemer (RE). Det er ME-diagnosen som først og fremst forklarer lav helserelatert livskvalitet. Demografiske faktorer som kjønn, alder, inntekt og sivilstatus forklare lite av variasjonen i utvalget. PEM-skår (Post exertional malaise, anstrengelsesutløst symptomforverring) er meget sterk negativt korrelert med fysisk helserelatert livskvalitet, forklart med nedsatt fysisk funksjon (PF) og smerte (BP). Det er mer moderat negativ sammenheng mellom PEM-skår og mental helserelatert livskvalitet, forklart ved lavere skår på sosialt liv (SF) og vitalitet (VT). Summary in English Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated. Previous research has pointed out that health-related quality of life (HRQoL) is very low for this group. The research project “Tjenesten og MEg” has made data material from a larger cross-sectional study available for this thesis, including the standardized questionnaire Short Form Health Survey (SF-36) which looks at HRQoL. The sample consists of those who have been diagnosed with ME/CFS by a general practitioner and/or specialist (n=581). Findings in the sample in HRQoL, measured by SF-36, were compared with the normal population, other chronic disease groups and previous ME/CFS studies. The material was also examined for factors that could explain variation in the sample. HRQoL for ME/CFS sample was significantly and considerably lower than in the normal population. Physical HRQoL was significantly lower than for the 18 chronic disease groups with which it was compared. Mental health-related quality of life shows a more mixed picture. For the subgroups vitality (VT) and social function (SF), it is significantly lower for those with ME/CFS. For the subgroups social role function (RE) and mental health in general (MH), several other disease groups have similar or worse scores. Compared to previous ME/CFS surveys, the sample has a lower physical HRQoL and somewhat higher mental HRQoL. However, the data confirm the overall pattern in previous surveys which show a very low physical HRQoL, including particularly low physical role function (RF) and general health (GH). The same applies to low scores on vitality (VT) and social functioning (SF). The ME/CFS sample see their reduced ability to work/limitation in activity as a result of poor physical health represented by role-physical (RF), and not because of emotional problems represented by role-emotional (RE). It is the ME diagnosis that primarily explains low HRQoL. Demographic factors such as gender, age, income and marital status explain little of the variation in the sample. PEM scores (Post exertional malaise) are very strongly negatively correlated with physical HRQoL, explained by reduced physical function (PF) and bodily pain (BP). There is a more moderate negative correlation between PEM scores and mental HRQoL, explained by lower scores on social functioning (SF) and vitality (VT).
Link to the study that produced the raw data: Tjenesten og MEg | The health service and ME, Ongoing, Sintef FaFo
Looks like solid work from the Masters student and the results won't surprise anyone here. I wonder though whether this sort of information really helps much when used in advocacy and awareness projects. Many clinicians and the general public think that people with ME/CFS are just over-reacting to symptoms that everyone has ("we all get tired"). So reporting that people with ME/CFS think they are just as ill as people with diseases that get more sympathy might just confirm beliefs and elicit eye-rolling.
It is the ME diagnosis that primarily explains low HRQoL. Demographic factors such as gender, age, income and marital status explain little of the variation in the sample. PEM scores (Post exertional malaise) are very strongly negatively correlated with physical HRQoL, explained by reduced physical function (PF) and bodily pain (BP). There is a more moderate negative correlation between PEM scores and mental HRQoL, explained by lower scores on social functioning (SF) and vitality (VT). It is not having the diagnosis of ME, it is having ME. I am guessing that is a subtle translation issue.
What I found, interesting, relevant and to fit with my views of the disease, is it seems this thesis finds QOL scores are very strongly correlated to severity of PEM. Fatigue is not even mentioned once in the abstract.
Huseby is a physiotherapist with experience working with ME patients. His field is Norwegian Psychomotor Physiotherapy, a treatment approach mainly applied to patients with musculoskeletal pain developed by a psychiatrist and a physiotherapist in the 1940s. The approach "conceptualised the reciprocal relationship between restrictions and regulations of muscular tension, breathing, movements and emotions" (a description from a scoping review from 2023). He writes that after having followed the ME debate over years, his impression is that it's about a small milieu in connection with Recovery Norge and The Oslo Chronic Fatigue Consortium who are rejecting the width of international research into ME. Lightning Process is mentioned as an approach where you have to reject your own illness and symptoms, leading many to a deterioration. He has a biopsychosocial approach to ME, but says that doesn't mean that a psychological approach can cure ME. It can however help to better understand how it is to live with the illness.
