2. Materials and Methods
2.1.1. Data Sampling
2.1.2. Data Collection
2.1.3. Data Analysis
2.3. Ethical Considerations
3.1.1. Theme 1: Lived Experience
3.1.2. History and Initial Presentation
3.2. Impact on Life
“I have all the people and things that are important in life and you know, like, relationships and the love you have got in your family, I still have that so my life has been boiled down to the most important bits that are still here. If I was going to lose things from my life, it would be my work, and yeah, it would be reluctantly to be able to go outside and have a life, but it’s these special relationships that I cherish that make me feel happy and content.”
3.2.1. Theme 2: Challenges to Everyday life
3.2.2. Intrinsic Concepts
“You get to a point in a relationship where you actually need to say, ‘This is what is going on with my illness...’ And then you have to eat and we never get a chance, there’s no time for conversation. All my emotions are around, are set to one side, all the loss, all the bereavement, loss of self, loss of life, loss of opportunity, loss of the living, so family relationships are just set to one side, there isn’t time to process those emotions to ever have them.”
3.2.3. Extrinsic Concepts
3.2.4. Theme 3: Management of the Condition
“Resignation—it’s not a great surprise after all these years. You hear about how much progress they make with this and that and the other and you think yeah, but there is obviously an awful lot of conditions where nothing changes for decades.”
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
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|Pseudonym||Age Range||Length of Illness||Gender||Living Arrangements||Support||Dependents||Background|
|JANE:||36–44||7 years||Female||Terraced house, predominantly bedbound, upstairs toilet.||Husband and mother||2 primary aged children||Very physically active prior to illness, professional, mother of 2 married.|
|DAVID:||36–45||18 years||Male||Semi-detached house. Predominantly housebound, living mostly in his bedroom.||Ageing parents||0||Single.|
Completed A-levels and managed to do office work between episodes of ill health, until early 20s.
Had been very active prior to ill health.
|ABI:||36–45||20 years||Female||Lived in a bungalow. Predominantly house bound.||Husband and ageing parents nearby||0||Married.|
Had been very active prior to ill health.
Completely bedbound in a bedroom.
|24-h social care||0||Single, professional, unable to work. Had been very active academically prior to ill health.|
|HELEN:||16–25||6 years||Female||Lived in a house with parents and older sister. Housebound, except for occasional outing assisted by family.||Working age parents and an older sister||0||Single, education abandoned due to ill health. Not able to work or continue education due to symptoms burden.|
|Theme||Subtheme||Concepts within Subtheme|
|Lived experience||History and initial presentation|
|Impact of illness|
|Challenges to Everyday Life||Intrinsic||Physical|
|Pseudonym||Pre-Existing Vulnerability||Trigger||Initial Symptoms||Time to Diagnose||Transitions of Coping Strategy|
|Jane||Young mum, full-time worker, transitioning point in life.||Complex.|
Viral infections, birth of son.
|Myalgia, pain, viral infections.||3 years||Persisting to Acceptance|
|David||Never returned to pre-glandular fever energy levels.|
Began working full time. Contracted influenza B.
Transitioning point in his life.
|Influenza B.||Post viral fatigue, aches and pains.||3 months to diagnose post viral fatigue.||Avoidance|
‘Head in the sand like an ostrich’.
|Abi||Not listening to body.||Tick bite.|
Working as a gym and aerobics instructor. Just kept going.
|Overly hot and sweating during routine exercise.|
Exhausted, muscles hurting, fatigue.
|Unknown||Persisting to acceptance of situation.|
|Lorraine||Limited support network. Establishing herself in her new career. Transitioning point in her life||Viral.||Orthostatic intolerance, fatigue, weakness.||Unknown||Persisting and boom and busting towards acceptance.|
|Helen||Exam time, transitioning point in her life.||Migraines and hypersomnia||Headaches, migraines, and hypersomnia||Unknown||Degree of persisting, boom and busting due to limited experience.|
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