Who said: don't bother testing patients?

JaimeS said:
For anyone who's interested in learning more about that, there is an awesome article called Fatigue in neurological disorders by Abhijit Chaudhuri & Peter O Behan (2004) that goes into great depth regarding differential diagnosis of central fatigue. It includes "CFS" but gets a lot right. I've definitely seen Behan's name on ME stuff before.
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Do you happen to have a link to that paper, @JaimeS - I'd love to see it. I took part in a clinical trial in late 1990s that Chaudhuri was doing though was never under him as patient, I just volunteered for trial. He is a truly lovely man, a gentleman.
 
Lucibee said:
brains and ideology from the 19th century.
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Or possibly 15th century? Their raison d'etre seems more priest than doctor. And they have that certainty that they are right that we are lead to believe were beliefs of the clergy back then. Whatever, they are causing harm to us, and to those who are unfortunate enough to have MH issues of whatever kind. Some are after "fame and fortune", and I'm sure we all recognise who they are.
 
And I've just found this table in Sharpe et al. Chronic fatigue syndrome. A practical guide to assessment and management. Gen Hosp Psychiatry 1997:

Sharpe Table 3 Gen Hosp Psych 1997.png
below which is this quote:
Reports from specialist settings have shown statistically increased rates of abnormal results on tests for parameters such as antinuclear factor, immune complexes, cholesterol, immunoglobulin subsets, and so forth. These are encountered only in a minority, and are rarely substantial. Their significance is for researchers rather than clinicians, and we feel that routine testing for such variables is more likely to result in iatrogenic harm than good. There is currently no diagnostic test or pattern of tests that can assist in the diagnosis of CFS.
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roller* said:
could have also concluded:
depression (psychiatric condition) may be postviral disorder
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Ding-ding-ding! We haaave a winnah.

Lucibee said:
To take this back to where it all started, "who said, 'don't bother testing patients,'" I think it comes down to this...

There is an expectation nowadays that medicine should have all the answers, and that there should be a test for everything. That there isn't is clear. And I can sort of see the point that endlessly testing for things for which there isn't a *definitive* test might be harmful.

However, some enterprising characters (who happen to be psychiatrists) have sought to capitalise on this by offering their own "solutions", and by categorising the whole field of conditions that medicine cannot explain (or more importantly, cannot effectively treat) they can ensure that their dying field is rejuvenated, particularly as increasing numbers of psychiatric disorders are explained by biological processes.

Personally, I think this is a misuse of their "talents", and that they should be focussing their efforts on helping people to live with chronic illnesses (and all the 'psychosocial' issues that entails) until such a time that a viable treatment comes along. They certainly should not be standing in the way of elucidating the causes or developing those treatments - but that's what they have ended up doing. And they need to understand that that's why so many of us are upset with them.
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Lucibee, you've tied this fifteen-page thread up with a bow. Perfectly said.
 
chrisb said:
Again this too is becoming an increasingly accurate perception of modern psychiatry. Many of the recent trends in psychiatry are consistent with that observation. For those rejected by medicine, and who are clearly not suffering from a major mental disorder such as psychosis, modern psychiatry is not an attractive home. Whilst we bitterly regret this, there is little denying its accuracy.
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Sorry I missed this comment initially.

This is really an interesting observation, actually.

Was the initial tension because people in mainstream medicine "didn't want" ME? Too complex, too many moving parts, easier to shift off to psych? Certainly some clinicians sure give that impression.

Every time I think I've got a good hold on the social aspects of this disease, it grows another layer.

I should add that everyone has the right to a counsellor if they want one and psychiatric care if they need it. That includes pwME, who may have comorbid conditions or been traumatized by having this miserable illness. I want to clarify I'm not hostile to those who need or want this kind of help! Rather, I'm ticked at:

1) Characterizing ME as a mental health disorder
2) The implication mental health treatment should cure pwME
3) The ridiculous handwavey way these studies are conducted, in place of scientific rigor
 
A bit of a counterpoint to that "in Ramsay's day, everyone knew pwME were sick" and "the McEvedy & Beard article did not have much effect".

http://worcsmegroup.weebly.com/uploads/2/9/2/4/2924979/2019.02_-_m.e._at_the_royal_free_hospital.pdf

“The consultant staff at the Royal Free received a request from Drs McEvedy and Beard from the Dept of Psychological Medicine at the Middlesex Hospital for permission to peruse the records of the nurses involved in the outbreak of 1955. I was one of the many staff who saw no reason why this request should not be granted as we had nothing to hide....
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I think I am correct in saying that the only dissenting voice was that of the late Dr Helen Dimsdale, consultant neurologist: I was frankly puzzled at her attitude, but when I asked for an explanation, she would only say ‘I think it is very possible that you will live to rue the day when you made yourself a party to this decision’. No truer word was ever spoken”
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These are apparently Ramsay's own words, from 'ME and Post Viral States'.

Another direct quote:

“So radically did McEvedy and Beard influence medical opinion that, when I have attempted to put the case for an organic explanation of the disease to younger present-day consultants, I have encountered an attitude of pitying disbelief and the remark - ‘Oh but that was long ago shown to be the result of mass hysteria’.

“I can only say that a whole generation of unfortunate victims of this disease have been driven to despair by the failure of their doctors to recognise the validity of their symptoms.”
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That Worcester ME Group information is interesting. However I am not quite sure about the Post Script. Wessely did publish an article in February 1987 but it is not primarily about ME. He started, as did McEvedy, with an interest in mass hysteria. Reference is made to the Royal Free outbreak but this only represents a small part of the paper.

Psychological Medicine February 1987
Mass hysteria: two syndromes?

Synopsis
On the basis of a literature review it is concluded that mass hysteria can be divided into two syndromes. One form, to be called ‘mass anxiety hysteria’, consists of episodes of acute anxiety, occurring mainly in schoolchildren. Prior tension is absent and the rapid spread is by visual contact. Treatment consists of separating the participants and the prognosis is good. The second form, to be called ‘mass motor hysteria’, consists of abnormalities in motor behaviour. It occurs in any age group and prior tension is present. Initial cases can be identified and the spread is gradual. Treatment should be directed towards the underlying stressors but the outbreak may be prolonged. In mass anxiety hysteria the abnormality is confined to group interactions; in mass motor hysteria abnormal personalities and environments are implicated.

I have also come across this letter from !988 which may throw further light on the question of the doctors to whom allusion was being made when it was said that those with the condition should not research it. If this does not refer to Parish it appears to be a non-sequitur.

Postviral fatigue syndrome
Br Med J (Clin Res Ed) 1988; 296 doi: https://doi.org/10.1136/bmj.296.6632.1329-c (Published 07 May 1988) Cite this as: Br Med J (Clin Res Ed) 1988;296:1329

Research done by sufferers from postviral fatigue syndrome is a delicate issue about which we thought deeply before expressing an opinion. Reviews by Parish' and others are valuable, but clinical research should be carried out by those without the inevitable, albeit unconscious, biases caused by suffering from this condition. Dr Hughson's comparison with Percival Pott is misleading. Pott did not have to consider the complexities of mind-body interaction when contemplating his fractured tibia.


 
I just noticed these sentences:
I have changed the bolding.

In addition, we believe that understanding of the postviral fatigue syndrome has been hindered by doctors who suffer from the condition also researching it. Though medical training affords insight into the subjective effects of illness, it is axiomatic that objectivity is not similarly enhanced.

This seems to be typical of the clever twisting of language that seems to imply a clever point but actually is a complete irrelevance. The contrasting of subjective and objectivity is non sequitur. And why should objectivity be similarly enhanced? Why does it matter if it is not? In reality this is a form of litotes - implying that objectivity is impaired. But on what grounds?

After eating poisonous mushrooms by mistake the late Dr John Henry became a leading authority on poisons and the director of the UK Poisons Unit. He was involved in identifying Litvinienko's Polonium I believe. What reason is there to think he was not objective in his work?
 
The disease has high predilections for medical personnel and for those in social classes 1 and 2 and only rarely occurs in more than one member of a family; these facts may be seen as further evidence of its hysterical nature. One report of an epidemic emphasizes the need to limit the number of laboratory investigations since investigation may increase the severity of the symptoms.' An increased incidence of pre-existing neurosis among sufferers has also been reported.

The post-viral syndrome: a review
M.l. ARCHER, MA, BM General Practitioner, Burnham Market, Norfolk
www.ncbi.nlm.nih.gov/pmc/articles/PMC1710789/pdf/jroyalcgprac00029-0021.pdf

I keep coming across references. The paper referred to there is this

Treatment was unsatisfactory and consisted of symptomatic measures. Simple analgesics were of little value for the headache and back pain but pentazocine, dihydrocodeine, and dextropropoxyphene were more helpful. Antiemetics were useful but antidepressants were valueless. Short-wave diathermy was not of much help. In the very early stages of the epidemic the number of investigations-particularly lumbar punctures, electroencephalography, and electromyography-was limited so as not to create an atmosphere of anxiety in a vulnerable population. Though this would handicap the discovery of the aetiology of the illness this policy was thought to be correct.

Epidemic Neuromyasthenia: Outbreak among Nurses at a Children's Hospital
M. J. DILLON, W. C. MARSHALL, J. A. DUDGEON, A. J. STEIGMAN
www.ncbi.nlm.nih.gov/pmc/articles/PMC1633383/pdf/brmedj02176-0019.pdf

This appears to be a rational response having regard to the best interests in particular circumstances.

I realise that I did not respond adequately to the query above regarding Percival Pott. I suspect that this story would have been known to every medical student of that generation. It was known to a cabinet maker with whom I used to climb and who would quietly remark, when he got about 15 feet off the ground with no protection, that "this is Pott's fracture height".
en.wikipedia.org/wiki/Percivall_Pott





 
chrisb said:
One report of an epidemic emphasizes the need to limit the number of laboratory investigations since investigation may increase the severity of the symptoms.'

I keep coming across references. The paper referred to there is this

Epidemic Neuromyasthenia: Outbreak among Nurses at a Children's Hospital
M. J. DILLON, W. C. MARSHALL, J. A. DUDGEON, A. J. STEIGMAN
www.ncbi.nlm.nih.gov/pmc/articles/PMC1633383/pdf/brmedj02176-0019.pdf
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This appears to be a study of an acute epidemic illness (neuromyasthenia) rather than ME/CFS.
It looks as if it is a hangover from the days when the two were confused by people like Acheson.
 
Jonathan Edwards said:
This appears to be a study of an acute epidemic illness (neuromyasthenia) rather than ME/CFS.
It looks as if it is a hangover from the days when the two were confused by people like Acheson.
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I realise that. Archer, who quoted it, did not distinguish, and he would appear to have been quite influential upon later work.

EDIT I know that some distinguish epidemic from sporadic cases, but it is quite clear that in many of the outbreaks the virus was endemic in the local population.
 
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