Anyone know the studies claiming to show if ME patients believe won’t get better they will not?

I was reading the chapter again in the book Cure by UK author Jo Marchant (published in 2016) on fatigue and CFS. She refers to there being robust scientific findings that when CFS patients are convinced that their condition is biological and untreatable, and fear that engaging in activity will be harmful, they are much less likely to recover. She cites no references for these studies. Does anyone know which studies she maybe referring to here? Thank you.

 

From memory: There was a study indicating that those who thought they had a psychological problem were more likely to report benefiting from psychological treatment, and this has then been repeatedly misrepresented.

 

I can't remember the study that is sometimes cited to support this point, but it fails to do so, and I'm not aware of any good evidence to support the claims made about this.

Here are some examples of people making this claim without citing supporting evidence:

From Wessely talking BS to the DSS (now the DWP): "As we, and now many other groups, have shown that the only determinant of outcome in this condition is strength of belief in a solely physical cause, then it will also itself contribute to disability and poor outcome."

The National Archives of the UK: Public Record Office (PRO) BN 141/1, 1 October 1993 Wessely to Aylward, pp 17-18.

From Chalder: Work, social and private functioning are usually impaired and the extent of the disability is usually determined by the degree of belief in the physical nature of the symptoms and/or fearful cognitions about the consequences of them.

http://www.babcpconference.com/archive/conference_archive/warwick2006_2.htm#W9

 

Sharpe says "patients beliefs that the symptoms of CFS are evidence of disease, particularly viral infection, and that any activity which exacerbates symptoms should be avoided, are potential causes of disability and distress" quoting Sensky T 1990 Patients reactions to illness. Br Med J 300:622-623

I have not read it. I doubt if I could stand it.

 

That stands to reason in the same way that those who believe they have spirits around them are more likely to report benefit from visiting a psychic medium.

 

Or that those who believe they have a fungal infections are more likely to report benefit from anti-fungals.

 

A chronic fatigue study:

Psychol Med. 2003 Feb;33(2):283-7.
Predictors of outcome in a fatigued population in primary care following a randomized controlled trial.
Chalder T1, Godfrey E, Ridsdale L, King M, Wessely S.
Author information

Abstract
BACKGROUND:
The objective of this study was to examine factors that predicted outcome in a chronically fatigued group of patients who were randomized to cognitive behaviour therapy or counselling in primary care.

METHOD:
Illness perceptions, attributions, fatigue, disability and demographic variables were recorded at assessment and levels of fatigueand disability were measured at 6 months post randomization. Logistic regression was used to examine associations.

RESULTS:
Factors that predicted a poor outcome (four or more on the fatigue questionnaire) were: poor social adjustment at assessment; the patients self-report that they had never seen the GP for an emotional reason; a physical illness attribution; and, a long perceived future illness duration.

CONCLUSIONS:
Patients who are more psychologically minded are more likely to improve with psychological treatments in primary care. General practitioners need to assess this before referring to an appropriate therapist.

Comment in

• Costs, correlates and consequences of fatigue in children and adults. [Psychol Med. 2003]

PMID:

12622306
[Indexed for MEDLINE]

 

J Psychosom Res. 1998 Jul;45(1):77-83.
Illness beliefs and treatment outcome in chronic fatigue syndrome.
Deale A1, Chalder T, Wessely S.
Author information

Abstract
Longitudinal studies have shown that physical illness attributions are associated with poor prognosis in chronic fatigue syndrome (CFS).

Speculation exists over whether such attributions influence treatment outcome.

This study reports the effect of illness beliefs on outcome in a randomized controlled trial of cognitive-behavior therapy versus relaxation.

Causal attributions and beliefs about exercise, activity, and rest were recorded before and after treatment in 60 CFS patients recruited to the trial.

Physical illness attributions were widespread, did not change with treatment, and were not associated with poor outcome in either the cognitive-behavior therapy group or the control group.

Beliefs about avoidance of exercise and activity changed in the cognitive behavior therapy group, but not in the control group.

This change was associated with improved outcome.

These findings suggest that physical illness attributions are less important in determining outcome (at least in treatment studies) than has been previously thought.

In this study, good outcome is associated with change in avoidance behavior, and related beliefs, rather than causal attributions.

PMID:

9720857
[Indexed for MEDLINE]

 

The premise seems to be missing a bit . . .

When patients believe their condition has a physical cause, and when they fear exercise,
they are much more likely to have an organic disease, and so
they are much less likely to recover.

 

It's all just the usual misattributed correlation/causation bullshit isn't it?

I've always wanted to do a study of people reporting to emergency complaining of leg pain and ask if they believe their leg is broken. I'm sure I would find a correlation with inability to walk unaided at one month, thus proving that belief in a broken leg causes poor outcomes.

 

@BruceInOz

I was mild for the first 4 years, I believed I had a burnout or something. So I believed it was psychological/stress-related and I believed it would be over pretty soon. I never thought I had ME (had a pretty negative believe about ME/CFS, sorry). I believed in GET and was begging for that kind of treatment. If I only could train myself up again very slowly, everything would be well again...

Didn't stop me from becoming moderate

 

This was me too. Except, the 'burnout' kept recurring, even when I stopped. It had its own rules, which I now understand comprise PEM and OI.

 

Exactly! I was in the last year of studying, but I was ill extremely often (15 courses of antibiotics in that year). Off course I had stress from being ill that often, having weak muscles, feeling exhausted, and then trying to finish my studies. But the GP kind of talked me into the burnout/stress thing and I thought it very logical at that time. It was only after 4 years of not getting better and then getting worse during CBT/GET rehabilitation, that I thought I might have ME/cfs.

Not the GP thought, because apparently it's normal to have a burn-out for 4 years and then get a lot worse, despite not having work at that moment and getting CBT/GET

When I read the notes from the GP then, I had twenty different infections that first year, and I weirdly felt like I had the "flu" after every bit of exercise. When I look back, I see the PEM now, even in the notes of the GP, but I didn't find out about the word PEM until about 6 years later.

 

I suspect that the origins for the claims with which the original enquiry was concerned lie in the paper

Sharpe M, Hawtpn K, Seagroatt V, Pasvol G 1992 Follow up pf patients presenting with fatigue to an infectious diseases clinic.
Br Med J 305:147-152

I have only seen the abstract, bit it looks of little worth.

"impaired functioning was more likely with certain patient characteristics" sounds likely to be the matter under consideration.

 

Thank you everyone, v helpful, as and as awful as I expected.