Who said: don't bother testing patients?

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.

 

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.

 

I don’t honestly know, Lucibee, but could well be CS since the paper was written in 1988... You could ask Charles, is he on here? Also interesting to see what SW writes about abnormal single fibre EMG, which I also had as part of my diagnosis under Behan in 1983/4.

 

@Nasim Marie Jafry - I think this is the paper that @JaimeS mentioned: https://www.ncbi.nlm.nih.gov/pubmed/15043967

I think I have a copy somewhere - as long as I didn't throw it out during my Lancet purge.

The reason it includes the term "CFS" is because that is Lancet style policy after a certain someone convinced them to erase "ME".

 

Great stuff. Thank you!

 

I don't know whether this has been mentioned before, but the minimal testing theme runs all the way through Fukuda (Ann Intern Med. 1994;121(12):953-959).
I can see why, but maybe that has been misinterpreted subsequently?

 

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:


below which is this quote:

 

Ding-ding-ding! We haaave a winnah.

Lucibee, you've tied this fifteen-page thread up with a bow. Perfectly said.

 

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

These are apparently Ramsay's own words, from 'ME and Post Viral States'.

Another direct quote:

 

Much more poignantly, and definitely more subjective/dubious, as it is from someone who knew him, but terrible if true:

Man.

 

Wow that's awful, the poor man.

 

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?

• Simon Wessely (a1)
• • https://doi.org/10.1017/S0033291700013027
  • Published online: 09 July 2009

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.

 

???

 

Sorry. Its a reference to this letter from Hughson confirming that Parish suffered from ME
https://www.bmj.com/content/296/6628/1067.4

 

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

 

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.

 

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.