Patients’ experiences of living with Long Covid and their beliefs about the role of psychology in their condition 2025 Petker and Ogden

Andy

Andy

Retired committee member
Abstract

Some patients with chronic conditions are unreceptive to a psychological approach. This study aimed to explore the experience of Long Covid (LC) with an emphasis on patients’ beliefs about the role of psychology. UK participants (n = 14) with either self-reported or diagnosed LC took part in semi-structured interviews.

Thematic analysis described three main themes: ‘Living in uncertainty’, ‘Why should I trust you if you don’t believe me?’ and ‘Once I know the cause people will believe me’. Transcending these themes was a tension between professional experts and experts by lived experience and a dichotomy between psychological and medical explanations. Overarching all themes was a sense that synthesising the biological and psychological components of LC could help to resolve this tension. In summary. living with LC is characterised by feeling disbelieved which can drive the rejection of psychology. Helping patients feel listened to may encourage a more positive approach to psychological support.

Open access
 
"A large body of existing literature illustrates the role of psychological factors in long-term conditions comparable to Long Covid, such as chronic fatigue (Hempel et al., 2008; Hulme et al., 2017), Rheumatoid Arthritis (Geenen and Dures, 2019), irritable bowel syndrome (Windgassen et al., 2017) and chronic pain (Giusti et al., 2021; Hruschak and Cochran, 2018). These studies posit that while biological processes play a role in illness onset, psychological factors, such as coping style, interpretation of illness and sense making or perceived social support will influence how illness is experienced and the impact it has on an individual’s daily life and draw upon health psychology theoretical frameworks such as the self-regulatory model of illness (SRM; Leventhal et al., 1980, 2016)."
 
"Whilst researchers have widely adopted a biopsychosocial approach to chronic conditions, not all patient groups are equally enthusiastic (Geraghty et al., 2019; Komaroff, 2015; Sharpe and Greco, 2019; Tesio and Buzzoni, 2021). This has been particularly apparent in those patients living with Chronic Fatigue Syndrome (CFS/ME; Geraghty et al., 2019; Komaroff, 2015). Whilst the disease pathology for CFS/ME remains unclear, CFS/ME patient organisations have been active in opposing the emphasis on psychological factors for their condition due to the collective experience that this approach downplays the seriousness of their illness and leads to the neglect of biomedical research (Blease and Geraghty, 2018; Geraghty et al., 2019; Komaroff, 2015).

Strong views put forward by this patient group around the management of their condition led NICE to delay and amend its planned publication of its updated guidelines for the diagnosis and management of CFS/ME in 2021 (NICE, 2021). Furthermore, pushback from the CFS/ME patient groups led to the removal of Cognitive Behavioural Therapy (CBT) as a treatment for CFS/ME reflecting the evolving power of the patient voice and a cultural shift towards patient-informed care."
 
"The third theme described how participants coped with their illness by searching for a physical cause to prove that their Long Covid is ‘real’. This finding can be understood in relation to Leventhal et al.’s self regulatory model (Leventhal et al., 1980, 2016). Participants appeared to appraise their former coping strategy of seeking medical reassurance from professionals as ineffective because of the lack of identifiable disease and often feeling dismissed. Instead, they adopted the alternative coping strategy of self-directed information-seeking, due to the belief or hope that they may find a physical cause which would solve the problem of Long Covid.

This mirrors the longstanding experiences of patients with CFS/ME and other medically unexplained conditions (Ireson et al., 2022), whereby the biomedical approach, which is central to the medical model, leads healthcare professionals to conclude that the absence of identifiable organic pathology means there is no real illness (Bayliss et al., 2014). Consequently, patients are cornered into adopting a medical position to prove the realness of their condition and work towards a cure (Werner and Malterud, 2003).

The findings showed that proving illness entails a long and time-consuming process of negotiating with healthcare services for further medical tests and scans and engaging in self-directed medical research. Such behaviours can heighten attention on symptoms and leave less time for potentially useful clinical interactions. Further, the attempt to prove the biological aetiology of Long Covid indirectly leads to a rejection of psychological thinking around the condition."
 
Strong views put forward by this patient group around the management of their condition led NICE to delay and amend its planned publication of its updated guidelines for the diagnosis and management of CFS/ME in 2021 (NICE, 2021). Furthermore, pushback from the CFS/ME patient groups led to the removal of Cognitive Behavioural Therapy (CBT) as a treatment for CFS/ME reflecting the evolving power of the patient voice and a cultural shift towards patient-informed care."[/QUOTE]


Who delayed the NICE guidelines?
Patients are blamed while the BPS crowd caused the delay.
Please correct me if I'm wrong.
 
Is the following correct?

"Strong views put forward by this patient group around the management of their condition led NICE to delay and amend its planned publication of its updated guidelines for the diagnosis and management of CFS/ME in 2021 (NICE, 2021). Furthermore, pushback from the CFS/ME patient groups led to the removal of Cognitive Behavioural Therapy (CBT) as a treatment for CFS/ME reflecting the evolving power of the patient voice and a cultural shift towards patient-informed care."

My understanding is that NICE evaluated therapies on the basis of GRADE not on the basis of pushback by patients. Which patients delayed and amended a publication? If the sentence is incorrect someone should write a response.

In the case of Cochrane it is exactly the opposite that is happening!
 
Ogden is one of the professors that resigned in protest of the 2017 special issue that demolished the PACE trial (source: MEA based on a Times article avout emails the got access to):

James Coyne, a co-editor on the journal and emeritus professor at the University of Pennsylvania

(…)

Referring to Jane Ogden from the University of Surrey, who also left, he said: “Along with Jane Ogden who became so threatening when I offered a critique of her paper with which her chosen Pace fan agreed, f*** off. Let’s get all this backchannel bullshit into the open, you ol’ sleazebag.”

Yesterday Professor Ogden said that she had become increasingly worried about the planned edition. The Pace trial has come in for patient criticism so sustained that its original researchers, one of whom she knew, complained of harassment. She felt that this edition was not the balanced investigation that she had hoped for. “I just thought it was looking like a one-sided and very biased witch-hunt so I resigned. I felt I was getting caught up in something that was not very balanced or scientific.”

Professor Coyne said that his relationship with Professor Ogden and Professor Davey Smith had broken down after he accused them of undisclosed conflicts of interest, a charge they deny.
 
The medical expert of Long-Covid part is a bit interesting. It seems that "medical experts of Long-Covid", whatever that is supposed to mean, is equated with GPs in this study but completely misses the point that the things that they ridiculing the patients for saying (tachychardia, inflammation etc) are precisely the things other "medical experts of Long-Covid" have been bringing up to explain Long-Covid. Perhaps psychologist ought to investigate the "tension" between the beliefs of different researchers all hanging on to their favourite "pet theories" that have not led to any fruitful treatments of patients and that "more importantly, did not demonstrate an intention to listen, investigate or support her further".

But I guess the right approach for anybody's psyche is being told that you can heal yourself by changing your own thoughts and if that doesn't work, it's on you, which surely must be excellent for everybody's psyche and as usual there is a nice plug for that at the end of the article.
 
Apart from other dubious parts, I've spotted the following:

The authors write "Kingstone et al. (2020) found that Long Covid patients felt that the NHS Long Covid recovery advice to ‘pace’ activities was unhelpful and led to feelings of helplessness."

Kingstone et al. has 2 direct references to pacing, which seem to directly contradict this as they write

“Most participants reported that ‘pacing’ was a helpful management strategy, particularly during the recovery phase.”

“Participants described how they had found ‘pacing’ key to managing symptoms, and had specific suggestions about what services to support recovery and rehabilitation are needed.”
 
14 participants in total:
«Eleven participants were recruited through a previous study during which they left their contact details for follow-up. Three further participants were recruited via the researcher’s social network to broaden the participant.»

A slightly leading question:
«The interview schedule was as follows: ‘Can you tell me your experience of having Long Covid?’; ‘Can you tell me about the impact your illness had/is having on your life?’; ‘Can you tell me why you think your symptoms carried on?’; ‘What kinds of things you have done to try and make things better for yourself?’; ‘What do you think, from your own perspective, might help you manage your illness or recover?’; ‘What’s your understanding or view of how the way in which we think, feel or behave can impact on illness?’. Interviews took place between April 2022 and March 2023, lasted 25–35 minutes and were transcribed before undergoing analysis.»
 
article said:
Strong views put forward by this patient group around the management of their condition led NICE to delay and amend its planned publication of its updated guidelines for the diagnosis and management of CFS/ME in 2021 (NICE, 2021). Furthermore, pushback from the CFS/ME patient groups led to the removal of Cognitive Behavioural Therapy (CBT) as a treatment for CFS/ME reflecting the evolving power of the patient voice and a cultural shift towards patient-informed care."
Click to expand...
They so have this upside down and back to front.

I don't understand why any journal would publish something based on interviews with a small group of people selected by the researcher from their previous interviewees and chums. Bias....
 
Trish said:
They so have this upside down and back to front.

I don't understand why any journal would publish something based on interviews with a small group of people selected by the researcher from their previous interviewees and chums. Bias....
Click to expand...
It’s so much worse. I believe they might have been recruited from her phd thesis, which had major flaws. I’ve posted about it on the thread about the thesis, this is my AI-aided summary:
Utsikt said:
The study initially received ethical approval for a two-stage research design exploring psychological risk factors for Long Covid. It aimed to collect cross-sectional and longitudinal data to assess the relationship between psychological factors and Long Covid symptoms. However, after a Facebook post advertising the study received backlash from users, formal complaints were made to the Research Integrity and Governance Office (RIGO). As a result, permission to recruit via social media was revoked by RIGO, limiting participant outreach and preventing the longitudinal component of the study. The researcher was only permitted to share the survey within personal contacts, significantly reducing the sample size and introducing pro-psychology bias.
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