Recovery from chronic fatigue syndrome: a reflexive thematic analysis of experiences of people before, during and after treatment, 2025, Chalder+

[SNT Gatchaman]

Recovery from chronic fatigue syndrome: a reflexive thematic analysis of experiences of people before, during and after treatment

Spoiler: Authors

Tom Ingman; Trudie Chalder; Vanessa Lawrence

INTRODUCTION
Chronic fatigue syndrome (CFS) is a chronic illness marked by severe, medically unexplained fatigue. Cognitive behavioural therapy (CBT) moderately improves fatigue and functioning. However, there is debate about recovery and how this should be operationalised. The impact of treatment on how recovery is viewed is also unclear. This study explored how people with CFS receiving CBT viewed recovery and whether these views differed at various stages of treatment.

METHODS
A total of 19 people with CFS receiving CBT were recruited from a specialist service in the UK. Purposive sampling was used to ensure a mix of age, gender, ethnicity and treatment stage. Semi-structured interviews were used to gather data and a reflexive thematic analysis was conducted.

RESULTS
The sample included 11 (57.9%) females and 8 (42.1%) males, with a mean age of 40 years old (range: 20−63) The mean duration of illness prior to treatment was 60 months (range: 12−142). The following four themes were identified in relation to recovery: (1) a personal process; (2) a reduction in symptoms; (3) a process of rebuilding, regaining, and retaining; (4) disrupting old ways of living. Theme Four was expressed mostly by those at later-treatment stages, suggesting that these emerged during treatment.

DISCUSSION
Recovery is a blend of ‘clinical recovery, ‘personal recovery and ‘illness management models applied to other chronic conditions. Data suggests that concepts can change, and treatment may result in patients adopting views more in line with ‘personal recovery and ‘illness management models. These more flexible definitions, particularly those comprising changes to pre-illness beliefs and behaviours, new roles, acceptance and strategies to manage symptoms, corresponded with greater hope. Findings may help to inform realistic treatment expectations and contribute to more meaningful outcome measures.

Web | DOI | PDF | International Journal of Qualitative Studies on Health and Well-being | Open Access

 

[SNT Gatchaman]

Taken together, findings from the current study indicate that CBT treatment may elicit more flexible views of recovery that share similarities with the ‘illness management’ and ‘personal recovery’ models. These definitions of recovery include a rejection of previously unhelpful ways of living, adopting new roles and identities, acceptance and tools to manage symptoms. Flexible views of recovery and illness such as these may give rise to increased hope and better outcomes.

Conversely, those participants who held predominantly ‘clinical’ definitions of recovery, involving total symptom remission and restoring what is lost without change, generally had lower hope for recovery. The ‘clinical’ model of recovery was held by participants at various stages of treatment, including one participant at the end of treatment who did not feel treatment had been long enough or had provided her with enough home-based support. This latter participant expressed less hope for recovery and may represent the significant minority of people who feel they do not improve following current forms of CBT.

So CBT leads to redefinition of recovery away from actual recovery to Recovery™.

 

[Jonathan Edwards]

International Journal of Qualitative Studies on Health and Well-being

It reminds me of the option of domestic science instead of chemistry at school.

Someone should tell Tom that we judge a man by the company he keeps.

Data suggests that concepts can change, and treatment may result in patients adopting views more in line with ‘personal recovery and ‘illness management models.

And yes, the intellectual underwear may be showing a bit here.

 

[Eleanor]

the significant minority of people who feel they do not improve following current forms of CBT.

"You see, it's not that CBT isn't helpful, it's just that the poor dears don't realise they've been helped."

 

[ScoutB]

One of the funniest clues that BPS treatments don’t work is that the people with the best view of its results, its proponents, keep writing papers redefining recovery to be not recovering at all.

 

[NelliePledge]

No surprise the emperor is still parading the corridor of Kings College Psychology in the altogether with people still pronouncing their admiration of his “recovery” new clothes

 

[Sean]

Chronic fatigue syndrome (CFS) is a chronic illness marked by severe, medically unexplained fatigue. Cognitive behavioural therapy (CBT) moderately improves fatigue and functioning.​

Starts badly and quickly degenerates from there in an entirely predictable manner.

That it has Chalder's name on it is entirely unsurprising. She really is a one-trick pony.

 

[SNT Gatchaman]

Inclusion criteria were: (1) a diagnosis of CFS according to Centre for Disease Control and Prevention criteria (Fukuda et al., 1994) or Oxford criteria (Sharpe et al., 1991) following a biopsychosocial assessment conducted by psychiatrists with expertise in CFS; (2) aged 18 or over; (3) those referred to, receiving or having recently completed CBT. Exclusion criteria were: (1) unable to speak English (2); a co-morbid diagnosis (e.g., bipolar disorder); (3) expression of suicidal intent.

 

[forestglip]

They also used a 19 year old study for prevalence. I assume because prevalence studies have moved on to newer criteria since then.

The prevalence of CFS in the UK population is estimated to be between 0.4% and 2.5% (Prins
et al., 2006).

I don't see any mentions of post-exertional malaise.

I mean if they want to study a disease defined by those criteria, I guess CFS is the name of it. But it doesn't help patients fulfilling any definitions when papers keep coming out about two different conditions called the same thing.

Maybe it's time we get on with migrating to SEID. Or meckfuss. Or something.

 

[rvallee]

Clueless nonsense from people who have been asserting recovery for decades and are so devoid of scruples that they can still plow through with nonsense like "but what is recovery, is it really recovering, or is it a hidden process of personal discovery, or whatever?"

This stuff is just embarrassing. Absolutely nothing would be lost from firing every single one of those people, expelled from the profession, even. They have a hugely negative impact on everything they touch. Hell, fire everyone who allows to happen, too.

Obviously what every single patient defines as recovery is no more symptoms and what it means about being able to function, because it's the symptoms that impact function. But since they can't ever achieve that they just make stuff up. I blame the institutions that keep supporting, funding and approving this.

Gosh this is all so difficult to interpret:

All participants, at all stages of treatment, defined recovery in terms of a reduction in symptoms, such as unrefreshing sleep, less need for rest and pain after activity.

So what the hell is the rest of it even about? Throw this junk in a damn volcano and be done with it.

 

[NelliePledge]

Even their description of symptom reduction is bs. You may be able to sleep at more normal times or get zonked out so you’re not waking but most of the meds that do that have side effects you’re not necessarily going to be getting actual refreshing sleep from them. Same with pain meds. And pain after activity is just doms so cluelessly irrelevant.

 

[MrMagoo]

Ok well I have ME/CFS so this is meaningless, good work Trudie!

 

[Hoopoe]

There is social pressure to talk about chronic illness in positive terms.

That leads to living with chronic illness being labelled as "ongoing recovery" when in reality it's adaptation to the illness.

 

[Hutan]

Some consider CFS and myalgic encephalomyelitis (ME) to be the same disorder, whereas others suggest ME is a different condition, with separate diagnostic criteria (Lim & Son, 2020). The current study uses the term CFS, rather than ME, as this has been operationalised in the literature.

Seems as if these authors missed the memo about the preferred term being ME/CFS, and the substantial recent literature using that term.

It reminds me of the option of domestic science instead of chemistry at school.

Well, domestic science definitely contributed more to human health (how not to give your family salmonella etc) than anything produced by Chalder, qualitative or otherwise.

It's clear that people undergoing the CBT treatment did not experience a return to pre-illness function, but just modified their expectations. IThe 'Recovery' seems to be mostly about learning to cope with reduced function.

What the study doesn't tell us is if people would have arrived at the same place (learning how to cope and some degree of acceptance) just with time, or just with some sessions of tea and biscuits while chatting with others with 'CFS'. Probably they would. And probably they would arrive at that place with less shame about being ill and with much more commitment to advocate for better care and better research.

 

[Hutan]

Cognitive Behavioural Therapy (CBT) is currently the only treatment recommended by The National nstitute for Health and Care Excellence (NICE), which provides guidance on healthcare treatment in the UK (NICE guideline, 2021). This treatment is underpinned by a biopsychosocial, illness model of fear avoidance which proposes that initial fatigue symptomology is triggered by a viral infection or stressful event and that a subsequent combination of cognitive responses (e.g. fear of engaging in activity) and behavioural responses (e.g. activity avoidance) interact with physiological processes to perpetuate symptoms (Harvey & Wessely, 2009; Sharpe et al., 1996). The aim of treatment is to establish a regular rest and sleep pattern, gradually increase physical and mental activity, and to challenge unhelpful beliefs about symptoms and activity, including fears about symptoms or activity (White et al., 2011).

And that is just straight out bizarre and misleading. It seems that given Chalder et al couldn't get the NICE 2021 guideline to say what they wanted, they've decided to just pretend that it does. CBT based on fear avoidance as the treatment proposed by the NICE guideline?

I really think this paper needs to be challenged. There's so much wrong with it.

Evidence suggests that CBT improves symptoms such as fatigue and physical functioning (Castell et al., 2011; Ingman et al., 2022; Larun et al., 2019; Maas genannt Bermpohl et al., 2024; Malouff et al., 2008; Marques et al., 2015; Price et al.,2008) with one trial (White et al., 2013) reporting a recovery rate of 22%.

Larun et al 2019 gets another run, surprisingly not claimed as a 2024 publication. The Ingman 2022 paper is just a review of BPS trials; the Maas genannt Bermpohl is a meta-analysis. Living on past glories...

 

[Trish]

This approach has scary echoes of the LP method of telling people they have to tell everyone they have recovered as part of their recovery, and to ignore symptoms.

One thing that occurs to me with this is that, rather than empowering people, this is disempowering them by training them not to trust their experiences, and setting people up to feel a failure if they can't pretend because they are genuinely too sick.

This has knock on effects also on people around someone who starts talking more optimistically about being on the road to recovery when they are not. Support can be withdrawn, people want to believe someone is getting better and encourage them to keep talking positively.

Another serious knock on effect is on application for and awarding of financial support. The UK DWP and DHSS will love this stuff. We can all recover with some CBT, so need to be put in return to work programs instead of receiving financial support without strings.

The use of the name CFS and the old Oxford and Fukuda criteria is clearly a deliberate move to try to reclaim the name from the NICE ME/CFS guideline and pretend this applies to all of us, just as the Cochrane review does.

I don't think this is an isolated oddity. I think it's part of the old guard doing everything they can to push the White/Sharpe/Chalder/Wessely agenda, with White and Sharpe as advisors to health insurance companies and Wessely in the thick of the DWP getting people back to work agenda.

 

[Sean]

Seems as if these authors missed the memo about the preferred term being ME/CFS, and the substantial recent literature using that term.

It is a deliberate childish snub. A petty transgressive FU.

And that is just straight out bizarre and misleading. It seems that given Chalder et al couldn't get the NICE 2021 guideline to say what they wanted, they've decided to just pretend that it does. CBT based on fear avoidance as the treatment proposed by the NICE guideline?

They are basically just making it up as they go. It has been their whole act all along.

I really think this paper needs to be challenged. There's so much wrong with it.

Yes. Such bald-faced propaganda and dishonesty has to be called out. Including the journal's peer-reviewers and editors for letting it through. This is a particularly stark example of how the quality control process in this area is clearly delivering brazenly perverse outcomes and is wholly unfit for its intended purpose.

Evidence suggests that CBT improves symptoms such as fatigue and physical functioning​

After all this time, energy, utter certainty, and countless patient lives cruelly wasted on this farce, and 'suggests' is still the best they have?

Worst show ever. 0/10

I want my money (and my life) back.

 

[richie]

Reminds me of the doc that was on Scottish TV about ME some years ago, where they had one or two Mickell patients , one of whom at least had clearly not recovered and was cogitating on redefining his concept of health. There are one or two similar cases on the Recovery website which Garner participates in. Miller has a pretty full on description of full recovery which can be made in ME/CFS but I wonder how he would classify the "reframed" health "recovered".

 

[Nightsong]

The authors say in relation to the NICE guideline that "Cognitive Behavioural Therapy (CBT). . . is underpinned by a biopsychosocial, illness model of fear avoidance", but that's not what NG206 actually says:

Based on criticisms in the qualitative evidence of cognitive behavioural therapy (CBT) being described as a 'treatment' (cure) for ME/CFS, the committee considered it was important to highlight that CBT is not a cure for ME/CFS and should not be offered as such. Instead, it aims to improve wellbeing and quality of life, and may be useful in supporting people who live with ME/CFS to manage their symptoms and reduce the distress associated with having a chronic illness. It should therefore only be offered in this context, and after people have been fully informed about its principles and aims.

s1.12.32 goes on to say that it:

• aims to improve their quality of life, including functioning, and reduce the distress associated with having a chronic illness
• does not assume people have 'abnormal' illness beliefs and behaviours as an underlying cause of their ME/CFS, but recognises that thoughts, feelings, behaviours and physiology interact with each other

This is all rather fuzzy - perhaps deliberately so. Because the Chalder formulation does assume that patients have abnormal illness beliefs & behaviours I read it as actually proscribing that model and only allowing CBT formulations based on coming to terms with living with a chronic illness - as is sometimes offered to patients with other serious long-term conditions.

Of course there is no reliable evidence for it improving QoL or "functioning", not to mention that in many cases it clearly creates additional distress for patients. Frankly the whole CBT section of the guideline is complete bunk. I think it is actually harmful.

There have long been attempts to redefine, or cause patients to reframe, "recovery" - Peter White published a paper (link) clearly attempting to move in that direction in 2020.

 

[Trish]

Frankly the whole CBT section of the guideline is complete bunk. I think it is actually harmful.

Yes, and so is the section on exercise programs for those who want them.

The NICE committee had too many of the old guard therapists and doctors determined to protect the old style clinics. I guess those who know better felt they had to put these sections in to get unanimous agreement to the guideline. Basically we were stitched up, as we've seen from the BACME guides. That's not the fault of the patients and good clinicians on the guideline committee. They got us some gains for which I'm grateful, but the choice of people for the committee doomed it to only be a half way guideline.