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

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

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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

 

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.

 

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.

 

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

 

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.

 

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

 

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