Who said: don't bother testing patients?

It will be noted that Dillon recorded the characteristic relapsing/remitting condition continuing in some cases for a number of years.

 

Ramsay also followed patients over the years, found a relapsing/ remitting condition to account for about half the cases. There was no difference between survivors of the epidemics and sporadic cases of ME until the situation was confused by the invention of CFS.

My symptoms match the descriptions of the epidemics especially as I never had 6 months of fatigue giving a 50% loss of function.

No matter what anyone else on this forum has or what is being researched nowadays I have the same illness as epidemic ME.

 

The pattern of presenting symptoms also has consequences for the recognition of
illness and subsequent referral patterns. Patients suffering from depression with
primarily somatic features are more likely to be referred to physicians whereas those
with mainly traditional psychological features, especially guilt and low self-esteem,
are most likely to be referred to psychiatrists [32, 33]. This is one of many
explanations [9] of why the diagnosis of depressive illness is so often missed in
fatigued patients [34], as was the case in this sample. Moreover, such 'inappropriate'
referrals to physicians can lead to extensive physical investigation that may perpetuate
the symptom patterns of physical attributions. The converse may apply
following psychiatric referral, and it is probable that the attributional styles noted
in both samples were reinforced by their respective settings. Indeed, given the crosssectional
nature of the study, it is impossible to exclude the suggestion that the
observed attributional differences were entirely secondary consequences of referral,
although this seems unlikely
Journal of Psychosomatic Research
Volume 34, Issue 6, 1990, Pages 665-673

Attributions and self-esteem in depression and chronic fatigue syndromes
R.Powell∗R.Dolan∗S.Wessely
sci-hub.tw/10.1016/0022-3999(90)90111-G

This is an interesting paper in that Sherpa (so called because he is left to do all the heavy lifting whilst others make their bid for the summit) considers that it supports his assertion that

Furthermore there is some evidence to support the suggestion that patients who attribute incapacity and failure to a physical disease rather than to their own shortcomings are able to maintain a more positive self view.

So far as I can see Wessely et al say nothing so gauche and this statement by Sherpa is therefor most revealing

 

Re: https://www.s4me.info/threads/who-said-dont-bother-testing-patients.6532/page-15#post-146664

I'm currently making my way slowly through the marvellous Osler's Web.

Several things strike me. Although ESR (erythrocyte sedimentation rate), and other tests, are mentioned in the various guidelines etc, it doesn't tell the clinician what they supposed to be looking for. The implication is that it is just used to exclude other things. But Cheney noted that ESR was dramatically reduced (0-2mm/h - the rate you'd expect in a newborn or young child) in the Tahoe (and Charlotte) cohort. Also, NK cells were low. And of course the UBOs on MRI. I suspect these signs were left out of guidelines because no-one knew what they meant - and they hadn't been able to confirm them elsewhere - but that in itself should be a reason to keep pointing it out until someone worked out what is going on.
What's also concerning is that no-one seems to have systematically tried to confirm this in other cohorts. Was this a peculiarity of Tahoe? Or was it pathognomonic across the board? I wonder if anyone has looked at this more recently?

 

RE: this quote -- "As patients undergo more tests, they will focus on a laboratory abnormality and subsequently find researchers interested in studying these abnormalities". 50

Jumping in a million years later, that quote cited from source 50 stating that is not actually in that source. I just read the whole thing because it also appears as though Ron's oft-quoted review on one of his grants, "since ME can't be treated, what's the point in diagnosing it", might be directly from paper #50:

I'd say it's a coincidence, but this is one of the papers cited early by Wessley et al., and may be considered foundational to the BPS philosophy. It is an early paper that contains a surprisingly large number of arguments used in perpetuity.

Looks like they left the hypothesis that "having a father who was an overachiever" puts you at risk for contracting EBV in the past, though.

Lots of things confidently stated that have no citations next to them, such as "patients report swollen lymph nodes but clinicians do not find these." (yes, they do!) The reader is meant to take these assertions on faith.

 

A direct quote (in quotation marks no less) is not in the cited paper?

 

Just updating as the link to the MUS leaflet now seems broken - However, this one has been archived: https://web.archive.org/web/2013050...h.ac.uk/pdf/CHECKED MUS Guidance_A4_4pp_6.pdf

 

Further to my scuba / flight post #259 above I add
https://www.researchgate.net/public...ement_of_chronic_fatigue_syndrome?ev=auth_pub
(thread here)

Its a few years old dated 2013, but its one of my long term beliefs as it improved my abilities and strength within an hour of very shallow diving. I keep seeing possible links for example in the blood deformation oxygen / CO2 balance and SFN papers.

 

I've finally got round to writing this up... https://lucibee.wordpress.com/2023/...se-assumptions-plague-the-medical-literature/

In doing so, it's revealed some things I hadn't previously realised (or had forgotten) about the CFQ. That it is based on Goldberg's General Health Questionnaire, and that inception and validation is a bit dodge. I touch on that in the next post: https://lucibee.wordpress.com/2023/08/08/problems-with-pawlikowska-et-al-bmj-1994/ but I probably should try to go into more detail. Basically, as long as you use the right (complicated and flashy) tools and get broadly expected results, no-one will look too closely and reveal that all your assumptions are pants.

And it pains me that one of the most recent citations of Pawlikowska is in the development of a Turkish version of the CFQ. :aargh:

 

Do you have a reference for this? I thought Ramsay said all ME was relapsing / remitting.

 

Because it's not important to them, and never was.

This all linked to increasing the prevalence of psych(ish) disorders that fall into their patch. Empire building, if you will.

More here: https://www.s4me.info/threads/s4me-...fatigue-questionnaire.2065/page-9#post-488211