Trial Report ‘The world was going ..."The experiences of women with ME/CFS living with their partners during COVID-19 lockdown in UK, 2024, Sidu-Sehmbi, Wearden

[Dolphin]

https://research.manchester.ac.uk/e...through-what-we-go-through-everyday-the-exper

‘The world was going through what we go through everyday’: The experiences of women with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) living with their partners during the COVID-19 lockdown in the UK.


Tarnjit Sidu-Sehmbi , Alison Wearden, Sarah Peters, Kimberly Dienes

• Division of Psychology & Mental Health (L5)

Research output: Contribution to journal › Article › peer-review

• Overview
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Abstract
Objectives: Myalgic Encephalomyelitis/ Chronic fatigue syndrome (ME/CFS) is a long-term debilitating illness characterised by profound and persistent fatigue. The current study aims to explore the experiences of women with ME/CFS living with their partners during the COVID-19 lockdown in the UK.

Design: The study adopted a qualitative phenomenological design comprising semi-structed interviews with participants. Interviews were analysed using thematic analysis (TA).

Methods: Participants were women with ME/CFS (n=21) recruited through ME/CFS support groups in the UK. All participants were in romantic relationships and lived with their partners.

Results: Data were organised into three themes: (1) Lockdown disrupting routine, (2) Reducing difference and (3) Fear of getting COVID-19. People with ME/CFS found that lockdown disrupted their well-established routines. Although routines were disrupted by partners increased working from home practices, participants found having partners at home helpful. People with ME/CFS believed that the changes induced by the pandemic reduced the differences between themselves and the outside world which, prior to lockdown, had felt prominent. They were fearful of getting COVID-19 as they believed this would make their ME/CFS worse. This meant that for people with ME/CFS, the lifting of the lockdown restrictions was an anxiety provoking time, hence impacting symptoms. People with ME/CFS continued to adhere to government guidelines after national restrictions were eased.

Conclusions: This study outlines the experiences of women with ME/CFS during the COVID-19 lockdown, alongside the long-term impact this has had due to the changes the pandemic imposed. These findings may have implications for those with long COVID.

Original language English
Journal British Journal of Health Psychology
Publication status Accepted/In press - 19 Feb 2024

https://twitter.com/user/status/1762188930659529033

 

[rvallee]

I really don't like that comparison and don't think it's valid. The experience of being stuck at home for a but during the pandemic and being stuck at home because you are ill are as different as the experience of being in jail for a few weeks is to being held indefinitely in a prison where they beat you and torture you while being innocent of the accusations that led to sentencing. Yeah, being in prison is bad, but being tortured and beat up for false reasons is a whole other layer of suffering, and that's before the fact that it never ends, unlike lockdowns, which were short and limited.

And of course the whole thing has been reversed in such a mad way that things are actually worse now, people are being encouraged to be sick, to spread disease and what few accommodations were made during the pandemic have almost all been made to be unreasonable now, worse than before.

 

[Three Chord Monty]

Merged - PhD thesis

This is a PhD student thesis from the Division of Psychology & Mental Health at the University of Manchester. One of the four Supervisors is Alison Wearden, which is probably all one needs to know. They certainly don't need to read the linked 477-page full paper.

Abstract

Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is a disorder with a range of symptoms, such as persistent and debilitating fatigue, sleep disturbances, and myalgia. People with ME/CFS are likely to spend a significant amount of time with their romantic partners due to their level of disability, as well as changes in daily lifestyle related to the illness. Research has shown that significant other behaviour can impact treatment outcomes for people with ME/CFS, demonstrating the importance of relationships in illness outcomes. A diagnosis of ME/CFS may add stress to an individual’s romantic relationships, for example in the context of partner caregiving burden due to disability and unemployment. Research exploring the acute stress response of people with ME/CFS has found no significant difference between the stress response of people with ME/CFS and controls. Stress is often associated with an increase in ME/CFS symptoms such as fatigue, however little is known about relationships and stress. This programme of research aimed to explore the impact of significant others on stress and ME/CFS symptoms through adopting mixed methods design.

This thesis comprises a systematic review and three empirical studies which are presented across four chapters: 1. A systematic review exploring the question: How do communication behaviours in romantic couples influence stress reactivity? (Chapter 3), 2. A qualitative study aiming to understand the role of significant others in the experiences of stress for women with ME/CFS (Chapter 4), 3. A qualitative study exploring the experiences of women with ME/CFS living with their partners during the COVID-19 pandemic in the UK (Chapter 5), and 4. A study exploring the feasibility and acceptability of an online marital interaction paradigm assessing the stress response, adapted for the use of an ME/CFS sample (Chapter 6). Each study offered a unique contribution to the evidence base and presented new knowledge to develop a thorough and comprehensive understanding of the overall PhD aim.

The systematic review found that there were different patterns of stress reactivity associated with different types of communication behaviours. The findings suggested blunted HPA axis reactivity in couples where negative communication behaviours are present, as opposed to relationships where positive communication behaviours are present, i.e. where more ‘healthy’ stress responses are seen. This systematic review was used to inform the online marital interaction paradigm for the feasibility study presented in this thesis. For the two qualitative studies presented within this thesis, the first aimed to explore the role of significant others in the experiences of stress for women with ME/CFS. Thematic analysis revealed the following themes: (1) Changes within the relationship due to ME/CFS (2) Feeling understood, and (3) Partner being an ally. The changes imposed by ME/CFS resulted in changes within the relationship, such as a change in roles, caregiver burden, and loss of identity, which commonly resulted in participants feeling guilty. Through these stressful experiences, partners being understanding of the limitations that the illness imposed, as well as acting as an ally in other relationships was seen as beneficial for the participant in dealing with this stress.

The second qualitative study explored the experiences of women with ME/CFS living with their partners during the COVID-19 pandemic in the UK. Thematic analysis revealed three themes: (1) Lockdown disrupting routine, (2) Reducing difference and (3) Fear of getting COVID-19. Participants revealed how restrictions associated with lockdown substantially disrupted the routines they had established to keep well, and they felt particularly vulnerable to getting COVID-19. However, the restrictions being imposed on the wider general population acted to reduce their feeling of difference, as others now also experienced the social isolation they commonly experienced. Lastly, the feasibility study showed that the online marital interaction paradigm which had been developed for use with people with ME/CFS and their partners was feasible and can also elicit a biological stress response.

Strengths and limitations of this programme of research are acknowledged, and wider implications of the research have been highlighted, alongside recommendations for future research through a feasibility study. This research has key implications for healthcare professionals, people with ME/CFS, and partners of people with ME/CFS. It is suggested that partners are included in research as well as treatment programmes for ME/CFS. This thesis has contributed to the literature by providing insight into and building upon research exploring the importance of romantic partner interactions in the experiences of stress and symptoms in people with ME/CFS.

1.2. Introduction to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Myalgic Encephalomyelitis/ Chronic fatigue syndrome (ME/CFS) is a long term debilitating illness characterised by profound and persistent fatigue, both mental and physical, co-existing with a range of symptoms including headaches, sleep dysfunction, difficulties with concentration, sore throat, sore lymph nodes, post exertional malaise and muscle pain (Sweetman et al., 2019, Clayton, 2015; Fukuda et al., 1994). The defining characteristic of ME/CFS is debilitating fatigue (Fukuda et al., 1994), which commonly results in a reduction in functioning from a pre-illness state in the patient.

 

[Three Chord Monty]

Two of the most frequently used definitions for ME/CFS are the UK (Oxford) criteria (Sharpe, 1991) and US Centre for Disease Control and Prevention criteria (Fukuda et al., 1994). In the UK, the NICE guidelines state that a diagnosis of ME/CFS should be suspected if people have all 4 key symptoms (debilitating fatigue, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties) for a minimum of 3 months in children, young people, or adults. The symptoms must not be explained by any other condition (Chew-Graham et al., 2010; NICE, 2021). The US Centre for Disease Control and Prevention criteria are similar; however they specify a minimum 6-month duration of fatigue and at least four additional symptoms (Fukuda et al., 1994). There is no diagnostic test or universally accepted definition for ME/CFS. A diagnosis of ME/CFS is based on symptom reporting, and a clinical assessment is used in practice which is designed to increase the accuracy of a ME/CFS diagnosis and rule out other possible conditions (Reeves et al., 2003). The clinical assessment involves obtaining a full medical history, psychiatric evaluation, sleep evaluation, and a physical health evaluation (Whiting et al., 2001) to rule out other possible diagnoses.

There are several hypotheses about the origin or cause of ME/CFS including: persistent viral infection (Post-viral fatigue) (Wessely et al., 1995), immunologic disorders (Bansal et al., 2012), vitamin deficiency (Heap et al., 1999), and childhood adversity (Heim et al., 2000; Kempke et al., 2013). These risk factors can be described as both proximal (e.g. viral infection) and distal (e.g. childhood adversity). Research has also shown that there are well established psychological risk factors. It has been found that illness beliefs, behavioural response patterns and mood predicted the development of long-term fatigue following glandular fever (Candy et al., 2003). Research surrounding these proposed risk factors for ME/CFS is commonly contradictory and complex.An early study carried out by Ware (1992) interviewed with 50 ME/CFS patients and found that 90% of these patients reported delegitimising experiences by health professionals due to the fact that the illness was not visible, and the lack of objective diagnostic markers. These factors commonly led to health professionals concluding that ME/CFS is psychosomatic, i.e. there is no physical explanation therefore the illness is ‘in their head’ (Ware, 1992). These findings have been supported by more recent research. Asbring and Närvänen (2002) conducted interviews with 15 women who had ME/CFS. Participants perceived that their credibility and the accuracy of their illness was questioned due to the absence of visible signs of the illness (Åsbring & Närvänen, 2002). The psychosomatic assumptions made about the illness, and its relation to perceived stigma was further explored in a questionnaire study including 39 ME/CFS patients (Green et al., 1999). This study found that 95% of the participants reported feeling estranged by the illness and 70% perceived psychological attributions.

1.4. Theoretical models of ME/CFS: The Biopsychosocial model of ME/CFS

As previously outlined, the dominant model within the healthcare system for ME/CFS is the biomedical model (Wade & Halligan, 2004). This can be problematic, as it disregards the multifaceted nature of the illness. Due to the multifaceted and heterogenous nature of the illness, ME/CFS cannot be conceptualised within the traditional biomedical model of illness (Wojcik et al., 2011). Multifactorial frameworks are beneficial for understanding the function of ME/CFS in the absence of a single biological process (Surawy et al., 1995). The biopsychosocial model of ME/CFS consists of three core factors; biological, psychological, and social factors (Butler et al., 2004). Within this model of ME/CFS, the symptoms a patient experiences, such as fatigue and cognitive deficit, are perpetuated by ‘dysfunctional illness beliefs’ and ‘sickness behaviours’ (Moss-Morris et al., 2013; Wessely, 1997) embedded within a social and healthcare system that sustains illness seeking behaviours (Geraghty et al., 2019). In other words, many biological systems are affected in ME/CFS (e.g. hypothalamic-pituitary-adrenal (HPA) axis, sleep disruption, cardiovascular and muscular fitness), impacting ME/CFS symptoms, and the effects are suggested to be perpetuated by psychological and social factors in a complex set of interactions. In line with this model, CBT for ME/CFS aims to encourage patients to change their perceptions of their bodily sensations (Geraghty et al., 2019).

I'd ask, rhetorically, of course, 'how/why does this still go on?' I got tired of asking that long ago, and we all know the answer, anyway. So come this August, we'll have one more genius expert authority with initials after their name that just flat-out lied on their PhD these, likely with/from encouragement by at least one supervisor, and somehow the cycle continues.

U of Manchester link: https://research.manchester.ac.uk/e...onships-stress-and-symptoms-in-myalgic-enceph

Full paper (pdf): https://pure.manchester.ac.uk/ws/portalfiles/portal/295566604/FULL_TEXT.PDF

 

[Three Chord Monty]

Amazing the amount of time & effort we waste especially considering how dishonest this all is, not to mention harmful. The worst part is knowing that they're so well aware that what they're doing is wrong. Even if they believe their way is the correct way, not acknowledging current guidelines and scientific understanding, and citing papers that say the exact opposite of what they're representing them as, is something I never would've believed people could get away with in an area that bridges academia, medicine, and science in this way. I mean, for all the BPS crap I've seen, I've only ever seen criticisms and dismissals of literature by the likes of Wessely, bad as that was/is. This is something else entirely. I've seen some of this sort of thing, like that Long Covid paper by those two clowns in Canada a few months ago, and this one is entirely focused on ME/CFS. Years after all the progress that seemed to be happening, it's just bizarre to witness.

 

[bobbler]

I'd ask, rhetorically, of course, 'how/why does this still go on?' I got tired of asking that long ago, and we all know the answer, anyway. So come this August, we'll have one more genius expert authority with initials after their name that just flat-out lied on their PhD these, likely with/from encouragement by at least one supervisor, and somehow the cycle continues.

U of Manchester link: https://research.manchester.ac.uk/e...onships-stress-and-symptoms-in-myalgic-enceph

Full paper (pdf): https://pure.manchester.ac.uk/ws/portalfiles/portal/295566604/FULL_TEXT.PDF

Ahh the viva process is something we have to remember throws in risk and amends too for PhDs I'd imagine in this area.

 

[Dolphin]

This paper has now been published. It is open access:
https://bpspsychub.onlinelibrary.wiley.com/doi/10.1111/bjhp.12717