Chronic fatigue syndrome: the ongoing medical debate (2018) British Journal of Healthcare Management - George Winter

I've not been able to get the full text for this, but thought that it might be of interest to people: https://www.magonlinelibrary.com/doi/abs/10.12968/bjhc.2018.24.3.112

It looks likely that it is sympathetic. The author previously wrote this: http://mobile.medicalindependent.ie/page.aspx?contentid=100315

 

It is on message in a very comprehensive way.


One side considers ME to be a mental disorder. This is exemplified by a leading proponent of the idea, consultant psychiatrist Professor Sir Simon Wessely; while delivering the 9th Eliot Slater Memorial Lecture in 1994, he argued that ME is, ‘simply a belief, the belief that one has an illness called ME’ (ME Action UK, 1994). On the other side is the view that ME has a physiological – not psychological – cause. ...

In September of last year, the National Institute for Health and Care Excellence (NICE) announced that they will reconsider their 2007 guidelines on ME (NICE, 2007). In its surveillance report, NICE (2017) stated that it had evaluated 155 pieces of evidence and considered the views of 39 stakeholder groups, including patient organisations and royal colleges. It acknowledged that interventions recommended in its 2007 guidelines (NICE, 2007) were based on a model of ME that favoured the disease as having a distinct psychiatric dimension.

In this context, the observations of Levine and Fink (2006: 408) are relevant. They consider that evidence-based psychiatry is ‘an unproven hypothesis’, arguing that it is based on unfounded assumptions, and they question the accuracy of both psychiatric diagnoses and the data on which medication selections are made. These unfounded assumptions, Levine and Fink (2006) contend, encourage a false sense of competence.

It is encouraging that NICE (2017) acknowledges the view of stakeholders that biomedical knowledge has undergone significant expansion since 2007, with greater emphasis placed on possible biological explanations.

Both error and confusion have indeed abounded following the PACE Trial (White et al, 2011). This randomised controlled study had 641 participants; cost almost £5 million; was part-funded by the Department for Work and Pensions (DWP); and concluded that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) could safely be added to specialist medical care (SMC) to moderately improve outcomes for what had now been reframed as CFS.

The PACE Trial generated such controversy that six years after its publication a Special Issue: The PACE Trial (2017) was published in the Journal of Health Psychology. ... The data showed that the effectiveness of CBT and GET, compared to SMC and adaptive pacing therapy, fell by almost two-thirds (Geraghty, 2017: 1106).

Last month, Carol Monaghan MP ...

 

What else does it say about PACE?

(this article isn't yet available on sci-hub)

 

Good recent piece on ME by Scotland-based science writer George Winter in volume 24, issue 3 of British Journal Healthcare Management. Paywalled, but George kindly sent me PDF.

Worth reading if you have access. @keithgeraghty's work on PACE quoted.

Link to article here: https://www.magonlinelibrary.com/doi/10.12968/bjhc.2018.24.3.112

The illness is referred to as Chronic Fatigue Syndrome in the BJHCM title but George calls the illness ME and points out that ME was 'reframed' as CFS in UK.

I don't have permission to repost the pdf online but maybe someone has access and can share?

I met George by chance last summer and we got talking - subsequently, he has become very interested in our political and medical struggle as patients. I think this is his third or fourth ME article since we met. He had a 30 year career in a virology lab before switching to freelance science writing and actually recalls doing blood analyses for Coxsackie virus in 1980s in Edinburgh when ME was 'rife' (my words).

 

Ah, thanks for merging, I tweeted the piece earlier in week but hadn't had a chance to post on here, I didn't know had already been done! Yes, George is a great ally, I think the fact he had a long virology lab career previously to becoming science writer stands him in great stead! I have sent him much reading material since last summer and he really is exploring ME diligently. We are lucky to have him, IMO.

 

Yes, George wrote the Medical Independent article after we met last year, he knew about ME, of course, but did not know about PACE at this point. I soon informed him!

I became a fan of the Irish journal, Medical Independent, after this article, but when it recently tweeted praise of Suzanne O'Sullivan - the Wellcome Prize neurologist who thinks ME is perpetuated by false illness beliefs - from a Dublin medical humanities/science literature event, it was a little dislocating, to say the least.

 

Is there a primary source for this that isn’t behind the UCL paywall, out of interest? Would be good to have a read of the context here. I see this quoted many times, would also be interested to know if Wessely has ever responded to it in later years with a denial / subtle change of position.

 

I'd guess it's linking to this: http://www.meactionuk.org.uk/wessely_speech_120594.htm

 

Thanks for reaching out to him. Great work.

 

I have heard it is now.