Thesis The experiences and coping strategies of individuals with chronic fatigue syndrome (ME/CFS) in the Finnish social security system, 2025, Vaisanen

[Dolphin]

Vaisanen J.
The experiences and coping strategies of individuals with chronic fatigue syndrome (ME/CFS) in the Finnish social security system [Finnish].
Eastern Finland Univ. 2025 May.
M.Sc. Thesis.

https://erepo.uef.fi/server/api/core/bitstreams/ba2274d4-c9c0-44e4-98bd-8723c6714bff/content

University of Eastern Finland, Faculty of Social Sciences and Business Studies Department of Social Sciences

Subject: Social Work

Väisänen, Johanna:

The experiences and coping strategies of individuals with chronic fatigue syn drome (ME/CFS) in the Finnish social security system

Master’s Thesis, 74 pages, 1 appendix (1 page)

May 2025

Abstract

This master’s thesis explores the experiences of individuals with chronic fatigue syndrome (ME/CFS) in the Finnish social security system, as well as the coping strategies they implement in response to the challenges posed by the system. Chronic fatigue syndrome (ME/CFS) is a com plex, long-term illness that poses challenges for both medical and societal difficulties. As a result, the status of individuals with an illness within the social security system is often unclear.

The theoretical framework is based on the concepts of chronic illness, vulnerability, and agency, as well as the structures of social services and social security. The research material consists of survey responses received through a written call for participation, submitted by individuals diagnosed with chronic fatigue syndrome (ME/CFS). The data has been analyzed using inductive con tent analysis. The findings are divided into two main themes: the first examines how individuals with chronic fatigue syndrome (ME/CFS) perceive the functioning of the social security system and whether they face barriers when applying for benefits. The second theme investigates the coping mechanisms they use to manage these challenges.

According to the findings, individuals with chronic fatigue syndrome (ME/CFS) often feel that their illness is dismissed, their diagnosis is questioned, and benefits are denied without ade quate justification. The application process for benefits is frequently experienced as exhausting and unequal. Repeated rejections and bureaucratic obstacles create a sense of being left in the blind spots of the social security system. Coping strategies vary from person to person, but key sources of support include social and peer support, self-driven activism, and psychological resili ence. Many feel they are struggling with the system at the limits of their endurance, alternating between resignation and determined resistance. This thesis highlights the need to reform the social security system and its practices to better accommodate the specific needs and vulnerable circumstances of people living with chronic fatigue syndrome (ME/CFS).

Keywords: Chronic fatigue syndrome, ME/CFS (myalgic encephalomyelitis/chronic fatigue syn drome), health insurance, social security system, social work Place of storage: University of Eastern Finland Library

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Itä-Suomen yliopisto, Yhteiskuntatieteiden ja kauppatieteiden tiedekunta Yhteiskuntatieteiden laitos Oppiaine: Sosiaalityö Väisänen, Johanna: Kroonista väsymysoireyhtymää (ME/CFS) sairastavien kokemukset ja selviyty miskeinot Suomen sosiaaliturvajärjestelmässä Pro gradu -tutkielma, 74 sivua, 1 liite (1 sivua) Toukokuu 2025 Tiivistelmä Tässä pro gradu -tutkielmassa tarkastellaan kroonista väsymysoireyhtymää (ME/CFS) sairastavien henkilöiden kokemuksia suomalaisesta sosiaaliturvajärjestelmästä sekä heidän selviytymiskeino jaan järjestelmän aiheuttamien haasteiden keskellä. Krooninen väsymysoireyhtymä (ME/CFS) on monimuotoinen pitkäaikaissairaus, jonka tunnustaminen ja diagnosointi on lääketieteellisesti ja yhteiskunnallisesti haastavaa. Tämän vuoksi myös sairastuneiden asema sosiaaliturvajärjestel mässä on usein epäselvä. Teoreettinen viitekehys perustuu pitkäaikaissairauden, haavoittuvuuden ja toimijuuden käsittei siin sekä sosiaalihuollon ja sosiaaliturvan rakenteisiin. Tutkimusaineisto koostuu kroonista väsy mysoireyhtymää (ME/CFS) sairastavien henkilöiden antamista kyselyvastauksista, jotka on kerätty kirjoituskutsun avulla. Aineisto on analysoitu induktiivisella sisällönanalyysilla. Tulokset jakautuvat kahteen pääteemaan, joista ensimmäisessä tarkastellaan, miten kroonista väsymysoireyhtymää (ME/CFS) sairastavat kokevat sosiaaliturvajärjestelmän toimivuuden ja kohtaavatko he esteitä etuuksien hakemisessa. Toisessa pääteemassa selvitetään, millaisia keinoja he käyttävät selviyty äkseen näistä haasteista. Tulosten mukaan kroonista väsymysoireyhtymää (ME/CFS) sairastavat kokevat usein, että heidän sairauttaan vähätellään, diagnoosia kyseenalaistetaan ja etuudet evätään ilman perusteltuja syitä. Etuuksien hakuprosessi näyttäytyy monelle uuvuttavana ja epätasa-arvoisena. Toistuvat kielteiset päätökset ja byrokraattiset esteet luovat kokemuksen sosiaaliturvan katveeseen jäämisestä. Sel viytymiskeinot vaihtelevat yksilöllisesti, mutta keskeisiä tukimuotoja ovat sosiaalinen tuki ja ver taistuki, omaehtoinen aktivismi sekä psyykkiset selviytymisstrategiat. Moni kokee kamppailevansa sosiaaliturvajärjestelmän kanssa jaksamisensa äärirajoilla, mikä näkyy luovuttamisen ja sinnik kään taistelun vuorotteluna. Tutkielma tuo esiin tarpeen kehittää sosiaaliturvajärjestelmää ja sen käytäntöjä niin, että ne ottavat paremmin huomioon kroonista väsymysoireyhtymää (ME/CFS) sai rastavien potilaiden erityistarpeet ja haavoittuvan elämäntilanteen. Asiasanat: Krooninen väsymysoireyhtymä, ME/CFS, sairausvakuutus, sosiaaliturva, sosiaalityö Säilytyspaikka: Itä-Suomen yliopiston kirjasto

 

[Utsikt]

Based on the abstract, it seems like they’ve done a good job at interpreting the data, assuming the challenges they face are similar to e.g. Norway.

According to the findings, individuals with chronic fatigue syndrome (ME/CFS) often feel that their illness is dismissed, their diagnosis is questioned, and benefits are denied without ade quate justification.

We have the same issues in Norway, with many decisions from the legal system that the welfare authorities refuse to follow.

The application process for benefits is frequently experienced as exhausting and unequal. Repeated rejections and bureaucratic obstacles create a sense of being left in the blind spots of the social security system.

Very familiar.

Coping strategies vary from person to person, but key sources of support include social and peer support, self-driven activism, and psychological resili ence. Many feel they are struggling with the system at the limits of their endurance, alternating between resignation and determined resistance.

It’s notable that all the support is from outside «the system». And the mention of psychological resilience is a nice touch - it’s a stark contrast to the narrative of not being able to cope with life as healthy, so we prefer to be sick.

This thesis highlights the need to reform the social security system and its practices to better accommodate the specific needs and vulnerable circumstances of people living with chronic fatigue syndrome (ME/CFS).

It’s nice to see it clearly spelled out!

 

[rvallee]

According to the findings, individuals with chronic fatigue syndrome (ME/CFS) often feel that their illness is dismissed, their diagnosis is questioned, and benefits are denied without adequate justification

The paper looks fine overall, but it sure would be great if this could be stated not as a feeling, but as a fact. Because it is a fact. As plain a fact as "children generally see specialist physicians called pediatricians". Not as clear as "the sun is a star at the center of our solar system" but still a basic fact. Zero feelings involved here. We 'feel' this way because it's just what it is, and most physicians wouldn't even disagree with it.

Because it only diminishes the reality of this fact by framing as a feeling we, well, feel, rather than a fact that is just the reality as some people have decided it should be.

 

[Utsikt]

The paper looks fine overall, but it sure would be great if this could be stated not as a feeling, but as a fact. Because it is a fact. As plain a fact as "children generally see specialist physicians called pediatricians". Not as clear as "the sun is a star at the center of our solar system" but still a basic fact. Zero feelings involved here. We 'feel' this way because it's just what it is, and most physicians wouldn't even disagree with it.

Because it only diminishes the reality of this fact by framing as a feeling we, well, feel, rather than a fact that is just the reality as some people have decided it should be.

The methods of the paper doesn’t allow for statements like the ones you suggest. While I completely agree with you assessment of this aspect of our reality, I think it’s correct to frame it as something that’s reported in the context of this thesis.

 

[Yan]

I've only read (well, listened with TTS) the first part, but this seems like a well written and researched paper. I'm very interested to learn what experiences others have in Finland! That said, it seems like they only got responses from 39 people, of which 31 were accepted to be used. For that reason the numbers presented may not be very reliable statistically. For example they found that 48% of the respondents were living on unemployment benefits, 45% by their spouse's or relatives assistance, 39% on personal savings, 35% on disability benefits (not sure what that means because there's a 6% "rehabilitation assistance" part which I believe counts as disability benefit) and 23% from work salary etc. Also people could have multiple incomes. But I think it still tells something interesting about the system here.

And personally, this is also very well timed. Should come helpful to me when I have an "assessment for the need of social services" by my local social services worker within 2 months time!

Many feel they are struggling with the system at the limits of their endurance, alternating between resignation and determined resistance.

This is 100% me. At times I'm resigned because "they've rejected everything so far and I just can't see any point trying to apply again, and my income from social security is sufficient anyway". And then resistance "I'm so pissed right now that I'm going to file a formal complaint to (whatever bureau), this is just so unfair. Give me back my human rights!".

 

[Utsikt]

That said, it seems like they only got responses from 39 people, of which 31 were accepted to be used. For that reason the numbers presented may not be very reliable statistically.

That’s a larger sample than I would have expected from a master’s thesis. I hope they don’t claim that their findings are generalisable?

 

[Yan]

That’s a larger sample than I would have expected from a master’s thesis. I hope they don’t claim that their findings are generalisable?

I'm not getting that impression. Also it is stated that 100% had a formal diagnosis of G93.3 postviral and related fatigue syndromes by a medical professional.

A quote from the paper, translated by DeepL:

The initial collection of the data
and the questionnaire was carried out before this study, so I
have not been involved in that process.
The data is based on a questionnaire, the invitation to write which was widely shared on social media, including
closed Finnish chronic fatigue syndrome (ME/CFS) Facebook
groups and online channels of the Finnish ME/CFS Association and other professional organisations. In addition,
The Finnish ME/CFS Association informed about the data collection in its membership letter. The Penna data collection tool, available via
, was used to collect the literature. A total of 39 contributions were received,
of which 36 were archived with the author's permission. One reply was deleted because the author refused to allow
to quote his text directly. In addition, four responses were removed from the data set because they contained only material previously published on the blog.

 

[Yan]

Just finished reading/listening this paper fully. I think that the author managed to highlight the everyday struggles of ME/CFS patients in Finland quite well, even though she admits in the end that she didn't know much about the syndrome beforehand. Probably the responses she used were similar and strong in their messages. I also can agree from personal experiences on the systemic problems that gets told. I'm not sure how much of interest this is to international audiences, but I'm happy to see this kind of paper written in finnish and possibly helping the situation in here!

In the last part, where the author speculates about things, she asked an interesting question. Why do applications for disability benefits get rejected so often especially for people diagnosed with ME/CFS?

That got me thinking about which are the diagnoses with most rejections when applying for benefits. So I asked Jan-AI (Llama) that in english!

A 2019 study published in the Journal of Disability Policy Studies analyzed data from the Social Security Administration (SSA) and found that the top five most frequently denied disabilities were:

1. Fibromyalgia (44.6% denial rate)
2. Chronic Fatigue Syndrome (43.4% denial rate)
3. Irritable Bowel Syndrome (42.5% denial rate)
4. Depression (41.8% denial rate)
5. Anxiety Disorders (40.9% denial rate)

 

[Utsikt]

@Yan does the author say why they decided to write about ME/CFS if they didn’t know much about it beforehand?

 

[Yann04]

Just finished reading/listening this paper fully. I think that the author managed to highlight the everyday struggles of ME/CFS patients in Finland quite well, even though she admits in the end that she didn't know much about the syndrome beforehand. Probably the responses she used were similar and strong in their messages. I also can agree from personal experiences on the systemic problems that gets told. I'm not sure how much of interest this is to international audiences, but I'm happy to see this kind of paper written in finnish and possibly helping the situation in here!

In the last part, where the author speculates about things, she asked an interesting question. Why do applications for disability benefits get rejected so often especially for people diagnosed with ME/CFS?

That got me thinking about which are the diagnoses with most rejections when applying for benefits. So I asked Jan-AI (Llama) that in english!

Those numbers seem weird to me? Maybe the Finnish system works differently?

Because in Switzerland most illnesses even biomedical ones have like 80-90% rejection rates. So the percentages seem off.
(The Swiss government being particularly austere is also maybe the culprit — in the 2000s the far right party did some major disability insurance reforms and it’s been very very “frugal” since)

Though to be fair it also probably depends the statistics from who. The official government statistics look super generous because they only include people who passed the first two hoops (Meaning most people were already rejected at that point).

 

[Yan]

@Utsikt Probably not directly but I'll quote parts from the introduction, again DeepL. Can guess from here perhaps!

My fifteen years of experience in the social and health care sector have focused mainly on supporting sick
people. I have worked in health social work, particularly in a hospital environment,
where I have found that people are excluded from support systems if their illness does not fit into existing
classifications.

In this thesis, I examine the experiences of people with chronic fatigue syndrome (ME/CFS)
in the Finnish social security system. So far, there has been little research on this topic in Finland, and there has been no previous research on the data I use. This thesis aims to address
the existing research gap by examining how social welfare and health care structures can better support
people whose diagnosis is difficult to define and whose life-style
is vulnerable.

 

[Utsikt]

@Utsikt Probably not directly but I'll quote parts from the introduction, again DeepL. Can guess from here perhaps!

Thank you! It seems like they might have previously encountered pwME/CFS that were rejected by the system, then.

 

[Yan]

Those numbers seem weird to me? Maybe the Finnish system works differently?

Because in Switzerland most illnesses even biomedical ones have like 80-90% rejection rates. So the percentages seem off.
(The Swiss government being particularly austere is also maybe the culprit — in the 2000s the far right party did some major disability insurance reforms and it’s been very very “frugal” since)

It was just a quick question to AI without any fact checks etc. I asked that "which diagnoses get percentually rejected most when applying for disability benefits?". So it's not about Finland either.