Individuals and families affected by CFS/ME: Population characteristics, service use and needs

ME/CFS is an illness that affects up to four percent of the population. It is a serious illness with potentially major consequences for those affected. The project had the following goals: 1. Identify disease incidence and key demographic and socio-economic characteristics of patients and their families. Investigate whether ME/CFS is an underdiagnosed illness. 2. Describe the healthcare and welfare services ME/CFS patients receive and discuss whether they respond to the needs of the patients and their families. 3. Gain knowledge on how the illness affects the life situation of the patients and their relatives. Study the extent of service use, as well as how the disease affects living conditions, including participation in the workforce and social security benefits. Data includes register data, in-depth interviews and a survey. The register data has been obtained from Statistics Norway, the Norwegian Patient Register (NPR) and the Municipal Patient and User Register (KPR). Patients are identified on the basis that they have received the diagnosis code G93.3 in the specialist health service. The following control groups have been included: random selection of the population, close family, and the diagnostic groups: Lyme disease, HIV, five cancer diagnoses, MS, hypertension, cerebral infarction, myocardial infarction and fibromyalgia. The survey's target group was people who are affected by fatigue, and who can qualify for an ME/CFS diagnosis. The questions are based on existing validated instruments. We have used a technique called Respondent-driven sampling (RDS), which means that people in the target group for the survey answer it and forward an invitation to participate to a maximum of three others they consider to be within the target group (N=660) The interviews aimed at providing in-depth knowledge of patients/relatives' service experiences. In 2019, 24 ME-affected households were interviewed. Half of the households (those with children) were re-interviewed (2022). In 2020 we conducted two group interviews with relatives of the severely ill (n=20), and in 2021 we conducted five small group interviews and one individual interview with the same target group. The informants came from all over the country (n=18). Findings: 5,556 new patients were diagnosed with ME/CFS in the period 2016-2018. The incidence rate was 36.1 per 100,000 person-years. This is higher than previous Norwegian research has shown. The incidence is highest among those aged 15-19 and 35-39. Healthcare services utilization is high compared to other patient groups. However, it is likely that use is not related to ME/CFS, but to other diseases. Survey data suggest that ME/CFS is an underdiagnosed disease. The study also indicates that it takes a long time to get the diagnosis. Analyses show that there is an association between socioeconomic status and incidence of ME/CFS diagnosis, where low education is associated with a low risk of ME/CFS and high education is associated with a higher risk. The study did not find clear differences for different income groups regardless of education. ME/CFS sufferers find that the services do not respond adequately to their needs. There is a lack of services, and the services that do exist are poorly adapted to them. Some measures, such as rehabilitation and work assessment programs, are described in particularly negative terms. Many report of distrust in the meeting with the services, and a lack of being seen, heard and respected. In addition to scientific dissemination at conferences and peer-reviewed publications, we have been concerned with including the users' voice, and we have wanted to participate in ongoing debates in the ME/CFS field. Among other things, we have communicated our findings to politicians in the Storting, participated in Arendalsuka and been active in media. There has also been close contact with user organizations, both through participation in events and in discussion of findings. We argue that more user involvement is necessary to develop future services that respond to patients' needs.

Prosjektet har hatt virkninger og effekter for flere målgrupper. For prosjektdeltakerne (forskerne) har prosjektet betydd etablering av en ny samarbeidsrelasjon mellom de respektive institusjonene, og det har bidratt til faglig utvikling, både empirisk og metodisk. Innsikt skaffet gjennom prosjektet har videre resultert i vitenskapelig og populærvitenskapelig publisering, samt deltakelse i samfunnsdebatten. Prosjektet har hatt mye dialog med brukerorganisasjonene og familier som er rammet av ME. Erfaringen er at funnene fra studien stemmer godt overens med deres erfaringer. Brukerne selv har fortalt at det at forskere på en systematisk måte har produsert kunnskap som i stor grad samsvarer med deres erfaringer, gir mer tyngde til opplevelsene deres når de skal formidle dem i møter med tjenestene og offentlige aktører. Det er imidlertid fortsatt mange problemstillinger som studien ikke har gitt svar på og som brukerne ønsker mer forskning på. Gjennom prosjektperioden har forskerne vært aktive i den offentlige debatten. Vi håper det har bidratt til større oppmerksomhet på hvordan personer med ME følges opp i helse- og velferdstjenestene og hvordan pasientene opplever å bli møtt. Prosjektet har arrangert to debatter på Arendalsuka, forskerne har skrevet kronikker og deltatt på Dagsnytt 18. Dette har vært kanaler som er rettet mot publikum og mot offentlige helse/velferdsmyndigheter og -tjenesteutøvere. Forskerne har videre arrangert flere åpne seminarer der blant annet brukerorganisasjoner har deltatt. Dette har bidratt til å spre forskningen til alle interesserte. En viktig målgruppe for prosjektet har vært helse- og velferdsmyndigheter, siden disse har reell mulighet til å endre tjenestetilbudet til ME-pasientene. Gjennom møter med stortingspolitikere og debatter der politikere har deltatt, har temaet blant annet blitt tatt opp i Stortingets spørretime og generelt har fått mer politisk oppmerksomhet. På sluttseminaret (26.9.23) var det videre flere personer fra Helsedirektoratet som jobber med den nye veilederen for utredning og oppfølging av ME-syke. Her ble det presentert funn fra prosjektet. Oppsummert vet vi at prosjektet har gitt stort utbytte til personer og familier som er rammet av ME ved at studiens funn i stor grad samsvarer med deres opplevelser. Vi tror at studien har gitt – og vil gi - effekter på utforming av tjenestene. Vi håper at studieresultatene gjør at ME-syke får tjenester som bedre treffer deres behov.

Three main topics is singled out in this project. First, the project aim to provide a thorough understanding of the population affected by myalgic encephalomyelitis syndrome (CFS/ME), the prevalence of the illness, who patients and their families are with respect to central demographic and sosioeceonomic traits, and to assess groups that may be underdiagnosed. Second, it aims to describe the variation in services received and evaluate to what extent available services fulfills the needs of the patients and their families. This will include health and social services, as well as welfare schemes set up to help patients and their families manage their educations and work-life. Third, our project aims to describe how the illness impacts the life-situation of patients and next of kin. Central questions to address are how the illness impacts students and their ability to keep up with their education, and how the work-life and living conditions of patients and their next of kin are affected. The project is divided into three distinct work packages. The first work package is a registry study on the level of individuals based on data gathered from four administrative registers in Norway: Statistics Norway (covering demographic, socioeconomic, welfare-services, educational and occupational data), Norwegian Patient Registry (covering data on hospital/specialized health care), IPLOS registry (covering data on home-based or institutional municipal care) and KUHR (covering physicians/GPs). The second work package is an interview-based study with focus on user experiences and perspectives on public services. The initial stage of this study will be explorative, capturing key issues that will be followed up with more in-depth interviews with chosen patients and households in later stages. Our third work package is a survey, applying the DePaul Symptoms Questionnaire (DSQ) to explore demographic or socioeconomic biases in existing diagnostic practices and population estimates.