Management of chronic (post-viral) fatigue syndrome, 1989, Wessely et al.

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wallfish

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Management of chronic (post-viral) fatigue syndrome

Wessely S, David A, Butler S, Chalder T

Abstract
Simple rehabilitative strategies are proposed to help patients with the chronic fatigue syndrome. A model is outlined of an acute illness giving way to a chronic fatigue state in which symptoms are perpetuated by a cycle of inactivity, deterioration in exercise tolerance and further symptoms. This is compounded by the depressive illness that is often part of the syndrome. The result is a self-perpetuating cycle of exercise avoidance. Effective treatment depends upon an understanding of the interaction between physical and psychological factors. Cognitive behavioural therapy is suggested. Cognitive therapy helps the patient understand how genuine symptoms arise from the frequent combination of physical inactivity and depression, rather than continuing infection, while a behavioural approach enables the treatment of avoidance behaviour and a gradual return to normal physical activity.

Web | Journal of the Royal College of General Practitioners
 
I was surprised not to find a thread for this work.

I have a question for the old-timers and historians here.

The authors describe "the conventional view", the one they reject in this paper, as:
You are ill with a poorly understood disease. Physical and mental activity should be limited in an effort to prevent further deterioration in your condition. Work, housework, childcare and physical exercise need to be avoided or approached with caution. An upsurge in symptoms should lead to further rest. This approach may help limit your symptoms until they resolve or a treatment becomes available. This is the 'conventional' view.
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They cite publications by patient orgs to support this. But I wonder: was this really the conventional view among doctors, the public and the media, or only among patients?
 
No change in nearly 40 years. The articles starts:

“So far little has been written in the medical literature on the treatment of such patients and this paper is an attempt to rectify this. No a priori assumption as to aetiology is made, and indeed it is the contention of the authors that although several risk factors have been suggested, both organic' and psychological, the precise actiology of the illness is unknown. This paper is not a review of the subject, but is intended to offer treatment guidelines to general practitioners, neurologists, physicians and psychiatrists, all of whom may be faced with people with the chronic fatigue syndrome.”
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The authors unambiguously argue that the condition is maintained by inactivity and deconditioning and can be treated by CBT whilst disingenuously claiming that they make no assumption about aetiology. From the start this approach has bypassed any attempt to understand the underlying condition while asserting psycho behavioural interventions are effective, despite the subsequent failure of their attempts at experimental verification.
 
wallfish said:
They cite publications by patient orgs to support this. But I wonder: was this really the conventional view among doctors, the public and the media, or only among patients?
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I think it was the view among a small but influential group of physicians with links to Melvin Ramsay, who did recommend deliberate rest and did claim that activity could lead to worsening. I am fairly sure that one or two of these physicans went as far as recommending lying in a darkened room for periods of weeks as the only way to get rid of the disease.

But these physicians would have referred to "ME". Most physicians would have regarded post-viral fatigue as a common problem that was best dealt with by taking things slowly and not pushing too hard but not because of fear of getting worse long term.
 
You are ill with a poorly understood disease. Physical and mental activity should be limited in an effort to prevent further deterioration in your condition. Work, housework, childcare and physical exercise need to be avoided or approached with caution. An upsurge in symptoms should lead to further rest. This approach may help limit your symptoms until they resolve or a treatment becomes available. This is the 'conventional' view.
Click to expand...
Good lord, if this was truly what was recommended before Wessely came on the scene he and his colleagues are even more despicable than I realised. If we take Wessely at his own word on what the conventional view they discredited was, they have destroyed so many lives of people that otherwise would have received good advice on what we would now call pacing and thus mantained a tolerable level of functioning.

Of course I'm sure not everyone was advised as above but its still heartbreaking to read considering how often I wish someone had said exactly this to me. Combine this approach with three plus decades of well funded biomedical research and who knows what our lives would all look like now.
 
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Jonathan Edwards said:
I think it was the view among a small but influential group of physicians with links to Melvin Ramsay, who did recommend deliberate rest and did claim that activity could lead to worsening. I am fairly sure that one or two of these physicans went as far as recommending lying in a darkened room for periods of weeks as the only way to get rid of the disease.

But these physicians would have referred to "ME". Most physicians would have regarded post-viral fatigue as a common problem that was best dealt with by taking things slowly and not pushing too hard but not because of fear of getting worse long term.
Click to expand...
And Wesseley et all could make them say farewell to common sense?
 
I am pretty sure that no one "was told" to lie in a darkened room unless they had serious light sensitivity.

Sorry, I am not up to locating the references right now, but am pretty sure the early UK ME Drs stated that *in their experience* those who were able to rest in the early stages of ME (convalescence) had a better chance of recovery - or a less severe level of illness.

Most people's lives do not allow them to just drop out of their own lives and rest in the early stages of ME -

People have jobs, schooling/college/university, children to look after, mortgages/rent and bills to pay ..... In most people's Real Lives, if they simply went to bed and stayed there they would end up in bed in the gutter.

And as I discovered pretty quickly - hardly anyone will accept that you are ill unless a Dr says that you are ill.

Unless a Dr confirms that you are ill you are NOT eligible for sickness benefits and financial help with rent - those with mortgages are in a much more vulnerable position. Though they may get help with their mortgage that takes time, and excludes the first 3 months. This puts sick people in a terrible unsafe financial situation that could destroy what is left of their entire lives..

So unless a Dr recommends or 'prescribes' rest, most people have to attempt to carry on trying to keep a roof over their heads, having to push themselves, it is NOT a choice, until they are so sick they cannot get out of bed at all.

So the advice to rest in the early stages of ME can be seen as attempts by the early ME Drs to give patients a chance, attempts to avoid deterioration and escalating PEM.

.
 
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There’s a Norwegian book from 2007 on pacing (Aktivitetsavoassing) that talks about rest as a way of healing. It recommends intensive rest for weeks or longer, and claims that it’s the only way to cause improvements.

You’re essentially told to accumulate as much rest as possible, and to keep doing significantly less than what your «limit» while improving. I don’t mind advocating for not rushing things if you are actually getting better - even Fluge and Mella recommend the participants to take things slow if they feel they are improving - but it’s something else to say that rest can heal.

Ron Davis has also advocated for this kind of view in an interview he did, where he claims a girl recovered from severe by deciding to never get PEM again (not even a little).
 
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