"...I'll take whatever you want, as long as it helps" Nutrition talk for people with ME/CFS in group fitness, 2025, Keurulainen (in Finnish)

[Dolphin]

”…Pitäkööt minä hihhulina tahansa, kunhan auttaa”: - Kroonista väsymysoireyhtymää (ME/CFS) sairastavien ravitsemuspuhe ryhmäkuntouksessa

Krooninen väsymysoireyhtymä (ME/CFS [myalgic encephalomyelitis/ chronic fatigue syndrome]; G93.3) on pitkäkestoinen ja vaikeasti diagnosoitava sairaus, jolle on tyypillistä voimakas ja pitkäaikainen uupumus sekä heikentynyt rasituksensietokyky. Oireet eivät selity millään muulla fyysisellä tai...

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Abstrakti​

Krooninen väsymysoireyhtymä (ME/CFS [myalgic encephalomyelitis/ chronic fatigue syndrome]; G93.3) on pitkäkestoinen ja vaikeasti diagnosoitava sairaus, jolle on tyypillistä voimakas ja pitkäaikainen uupumus sekä heikentynyt rasituksensietokyky. Oireet eivät selity millään muulla fyysisellä tai psykiatrisella sairaudella. Sairauden legitiimistä on kiistelty vuosikymmeniä. Sillä on ollut vaikutuksia niin sairastuneiden hoitoon kuin vertaisryhmistä omaksuttuihin itsehoitokäytäntöihinkin. Tässä tutkimuksessa tarkastellaan viidentoista kroonista väsymysoireyhtymää sairastavan ravitsemukseen liittyvää puhetta ja kokemuksia siitä, millainen merkitys ravitsemuksella on ollut heidän kuntoutumiseensa ja toimijuuteensa. Tutkimuksessa tarkastellaan myös millaista ravitsemukseen liittyvää tukea sairastuneet ovat saaneet terveydenhuollosta. Tutkimus on laadullinen. Aineistona ovat vuosina 2019, 2022 ja 2023 toteutettujen ryhmäkuntoutusten 1. ja 3. istunto, jotka litteroitiin. Aineisto analysoitiin induktiivisen sisällönanalyysin periaatteita noudattaen. Tuloksissa korostui, että ravitsemuksella oli toimijuudellisesti merkittäviä, kuntoutusta edesauttavia funktioita sairastuneiden kuntoutumisen prosessissa. Ravitsemuksen avulla rakennettiin konkreettisia keinoja kuntoutuksen toteuttamiseen, vahvistettiin osallisuutta ja toivoa kuntoutumiseen. Julkisesta terveydenhuollosta saatua ravitsemusohjausta ei koettu riittävänä, jolloin tukea haettiin verkkoyhteisöstä. Tutkimuksen johtopäätöksenä voidaan todeta, että ravitsemuksen rooli on merkittävä kuntoutusprosessissa niin fysiologiselta, psykologiselta kuin sosiaaliseltakin kannalta tarkasteltuna. Ravitsemuksen avulla sairastunut pyrkii rakentamaan kuntoutumisen potentiaaliaan ja toimijuuttaan. Sairastuneita auttaisi terveydenhuollosta saatu yksilöllistetty ravitsemuspsykologinen tuki, jossa keskityttäisiin ravitsemusohjauksen lisäksi tarkastelemaan ravitsemukseen liittyviä merkityksiä sekä ravitsemuskäyttäytymistä. Tämän avulla voitaisiin vahvistaa sairastuneen kuntoutumiseen suuntautuvaa toimijuutta.
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Automated translation:

"...I'll take whatever you want, as long as it helps"​

- Nutrition talk for people with chronic fatigue syndrome (ME/CFS) in group fitness​

• Meeri KeurulainenPäijät-Häme Welfare Area, University of Jyväskylähttps://orcid.org/0009-0003-5487-1477
• Juha HolmaUniversity of Jyväskylä, Department of Psychologyhttps://orcid.org/0000-0001-9731-0571
• Elina WalleniusPäijät-Häme Welfare Area, General Hospital Psychiatry Outpatient Clinichttps://orcid.org/0009-0006-8943-7736
• Mikko PankalainenPäijät-Häme Welfare Area, General Hospital Psychiatry Outpatient Clinichttps://orcid.org/0000-0002-8340-0928
• Jukka HintikkaUniversity of Tampere, Faculty of Medicine and Health Technology
• Markku PartinenTerveystalo Helsinki Sleep Clinic, Clinicum University of Helsinkihttps://orcid.org/0000-0002-8182-9368

DOI: https://doi.org/10.23990/sa.146273

Keywords:​

chronic fatigue syndrome, functioning, rehabilitation, nutritional psychology

Abstract​

Chronic fatigue syndrome (ME/CFS [myalgic encephalomyelitis/chronic fatigue syndrome]; G93.3) is a long-term and difficult-to-diagnose disease characterized by severe and prolonged fatigue and impaired exercise tolerance. The symptoms are not explained by any other physical or psychiatric illness. The legitimacy of the disease has been debated for decades. It has had an impact on the treatment of sufferers as well as on self-care practices adopted from peers. This study examines the nutrition-related talk and experiences of fifteen sufferers of chronic fatigue syndrome about the significance of nutrition in their rehabilitation and agency. The study also examines the kind of nutrition-related support sufferers have received from healthcare. The study is qualitative. The data consists of the 1st and 3rd sessions of group rehabilitations carried out in 2019, 2022 and 2023, which were transcribed. The data was analyzed according to the principles of inductive content analysis. The results emphasized that nutrition had significant, agency-promoting functions in the rehabilitation process of those with disabilities. Nutrition was used to build concrete means for implementing rehabilitation, and to strengthen inclusion and hope for rehabilitation. The nutritional guidance received from public healthcare was not felt to be sufficient, so support was sought from the online community. The conclusion of the study can be stated that the role of nutrition is significant in the rehabilitation process from a physiological, psychological and social perspective. With the help of nutrition, the person with disabilities strives to build their rehabilitation potential and agency. Those with the disease would benefit from individualized nutritional psychological support from healthcare, which would focus on examining the meanings and nutritional behavior related to nutrition in addition to nutritional guidance. This could help strengthen the patient's ability to act towards rehabilitation.

 

[Creekside]

While foods have a significant impact on my symptom severity, it's not because the foods are more or less "nutritional". Viewing the data through the lens of "nutritional value" is going to lead to invalid correlations.

 

[Trish]

Those with the disease would benefit from individualized nutritional psychological support from healthcare, which would focus on examining the meanings and nutritional behavior related to nutrition in addition to nutritional guidance.

This is bizarre.

 

[BrightCandle]

As part of my GPs attempts to get my on GLP-1 I did a couple of calls with nutritionists. They have zero knowledge on the disease and all the various bad responses I have to various foods just blew their conceptual models of food response completely apart, they had no idea how to handle all of it so they "I'll speak to my supervisor" then I got a text telling me I had cancelled (I had not)! Just turned into the usual gaslighting. These people have no clue what they are wading into and if they come in with this nutrient perspective they are going to completely fail.

 

[Midnattsol]

As part of my GPs attempts to get my on GLP-1 I did a couple of calls with nutritionists. They have zero knowledge on the disease and all the various bad responses I have to various foods just blew their conceptual models of food response completely apart, they had no idea how to handle all of it so they "I'll speak to my supervisor" then I got a text telling me I had cancelled (I had not)! Just turned into the usual gaslighting. These people have no clue what they are wading into and if they come in with this nutrient perspective they are going to completely fail.

Some of us aren't all that bad and know the limitations of the field

Guidance in Norway is for someone with a disability that can impact their food intake to be screened for malnutrition, but that is to avoid deficiencient intake of food/nutrients being an additional health problem to whatever is causing the disability, not a cure. At least in theory, as with physiotherapy/rehabilitation you have evangelists among dietitians as well.

 

[rvallee]

This is bizarre.

The conclusion of the study can be stated that the role of nutrition is significant in the rehabilitation process from a physiological, psychological and social perspective. With the help of nutrition, the person with disabilities strives to build their rehabilitation potential and agency.

WTF?

Those with the disease would benefit from individualized nutritional psychological support from healthcare, which would focus on examining the meanings and nutritional behavior related to nutrition in addition to nutritional guidance. This could help strengthen the patient's ability to act towards rehabilitation.

Just total weirdness. They hear the noise patients make but they hear something else entirely. None of this has anything to do with anything we could tell them. They're not studying us. They never studied us. They only ever study themselves, it's like an entire discipline made of "reaction videos" but it's random scrambled noise.

And they call it evidence-based medicine.

 

[Creekside]

They have zero knowledge on the disease

I didn't even bother trying to get an appointment with a nutritionist. I expected their response would be along the lines of: "Which well-known disease would you like a pamphlet for?"