Who said: don't bother testing patients?

All these quotes are appalling. If we can't find anything wrong with our basic tests stop testing. If there is anything else wrong it will reveal itself in time. How will it reveal itself? In death?

Since pwME are not believed from the get-go, how do they convince physicians they have anything else wrong? PwME might go through repeated consults to try and convince their doctors they are in terrible pain with something unrelated to the ME. Does it have to become a life-threatening emergency before pwME will be believed?

This attitude applies to those with other unexplained illnesses as well. And, on occasion the occult disease does have to become life-threatening in order that the patient is believed.

About fatigue, and the statement that most patients who present with chronic fatigue as their primary complaint are depressed, or some other such psychological label, this could be misleading advice. A number of variables could conspire to lead the doctor away from the real, and very biomedical cause to a psychosomatic diagnosis. Five or ten minute medical consults aren't adequate to cover all the symptoms or possibilities. If patients haven't noted symptoms in addition to fatigue, even if they have others, then this may incorrectly lead the doctor to a diagnosis of depression.

My go-to example hypothyroidism has fatigue as a major component. And many other symptoms including dry skin and hair, hair loss, weight gain, depression, muscle aches, tenderness, stiffness, reduced heart rate, memory problems, cold sensitivity, etc.

Combine the advice that most chronic fatigue is some sort of psychological problem, with truncated consults, and either an incomplete list of symptoms, or a dismissal of symptoms, and the person with hypothyroidism leaves with a diagnosis of depression.

And, all the "emotional palpation" and such terms has palpated my gag reflex.
 
Jenny TipsforME said:
Peter White said about not doing tilt table test, though gave the reason it was too demanding for us
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That's the same reason given for not allowing ME sufferers to donate blood in the UK. Seems to be a tried and tested line of bullshit.

Mithriel said:
I really begin to wonder if we would be better off being treated by vets. My planned career was in plant pathology where enduring and disabling bodily symptoms were not treated with CBT
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I'll be happy to go halves on a pantomime horse costume with anyone who's up for it.

Scary thread title by the way - I thought the World Health Organisation had just announced that patients shouldn't be tested :jawdrop:
 
Mechanic gives what is effectively a cost/benefit analysis, which does at least show the rationale behind the process, but says, under the heading

Implications for the evaluation of CFS:

….There is an incredible diversity of response and disability among patients with comparable medical conditions, suggesting the importance of motivation, personal and social expectations, and social support. In the absence of a known cause, or cure, the first responsibility of the clinician is to support as much function as possible and to avoid inadvertent legitimation and reinforcement of a pattern of disability.

One major protection against over-aggressive diagnostic exploration, when the potential benefits are small, is continuity of care and reasonable knowledge, and the monitoring of the patient over time....

David Mechanic. Chronic Fatigue Syndrome and the treatment process. Chronic fatigue Syndrome Ciba Foundation Symposium173 @p325

It could reasonably be argued that all those so far quoted are not saying do not test, but are saying do only such reasonable tests as might be necessary to rule out a reasonable differential diagnosis, and then stop. This approach would be acceptable if reasonable funding were being put into research for causality other than biopsychosocial nonsense.

Unfortunately the discussion following the paper is unhelpful:

Mechanic: I may have reverted to psychiatric and psychological language in presenting my paper, but everything I said about "intervention" could be done without referring to mental illness or psychological factors.

Kleinman: In many ways one of the most intriguing things you have said is that one can affirm the illness experience without affirming the attribution for it; in other words, we can work within a "somatic" language, and do all the interventions that we heard earlier had been done from the psychosocial side, but in such a way as to spare patients the experience of the delegitimization of their bodily experience.
@p329

Or, in other words, we cannot trust a word they say. The comment by Kleinman was apparently received without demur by the attendees, including White, Wessely, Sharpe, Edwards R.
 
Inara said:
I think what can also be clearly seen in this example is how similar the contents of different authors are. This is not science. I always wonder how something can be published that just cites what others have already written, without adding anything new or without something that needed extensive thinking/analysis/logic.
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I think the proper scientific terminology is a mutual admiration society, aka a circle jerk.
 
Mithriel said:
" It is still not well enough known that for enduring and disabling bodily symptoms a purely biomedical explanation of the extent of the symptoms is hardly ever appropriate."

I really begin to wonder if we would be better off being treated by vets. My planned career was in plant pathology where enduring and disabling bodily symptoms were not treated with CBT
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Describing literally the only thing that matters as "still not well enough".

Actually, yes, definitely well enough, to the point where nothing else actually matters in comparison.

Like an insurer saying "well, I guess we could reimburse you for the cost of your burned down house, but is that really what you want from us?" Yes, yes it definitely is.

The incompetence is just breathtaking. If everyone involved in this nonsense was kicked out of medicine entirely, absolutely nothing of value would be lost and society would massively gain from it. Astounding.
 
"I think what can also be clearly seen in this example is how similar the contents of different authors are. This is not science. I always wonder how something can be published that just cites what others have already written, without adding anything new or without something that needed extensive thinking/analysis/logic."

My husband is a microbiologist, scientifically trained. When he was doing a degree in computing he had to do a sociology course. In that, essay questions had to be answered by quoting what other people thought rather than what you thought about the topic. It felt totally alien to us. Either because of my arrogance, or because of my experience with ME, I wondered why someone else's ideas should be better than mine as long as I gave reasons for what I thought.
 
Peter Trewhitt said:
Here is a clear statement in the 'Guidance for health professionals on medically unexplained symptoms (MUS)' Royal College of Psychiatrists, which states "Investigation causes significant iatrogenic harm" see https://www.rcpsych.ac.uk/pdf/CHECKED MUS Guidance_A4_4pp_6.pdf

It has a reference list and cites two seen as supporting this statement.

[Added - these references are
  1. Kouyanou K, Pither CE, Wessely S. Iatrogenic factors and pain. Psychosomat Med 1997; 59:597-604.

  2. Fink P. The use of hospitalizations by persistent somatizing patients. Psychol Med 1992; 22:173-80. ]
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Bless you, sir.

Wessley and Per Fink. Not exactly a surprise.
 
Peter Trewhitt said:
This 'Implementing a psychotherapy service ... ...' has some interesting comments, my favourite so far is a suggestion that treating people with MUS can be so stressful for clinicians that they may end up somatising their own distress and themselves present with MUS. So not content with adding large swaths of patients to their psychiatric client list they also want to add the clinicians treating them to their patient list as well.
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Hyde found that the three professions seen most often in his office were:
  1. Health care workers (nurses, doctors)
  2. Teachers and uni profs
  3. Foreign aid workers and people whose jobs meant they often traveled abroad
High stress and frequent exposure to a wide variety of infectious organisms?

Probably more possibilities to develop ME than the general population.

When the doctor begins to say to his/her colleagues: guys, I think this is for real... I think I might have something like this... I had this infection and now...

Their colleagues cluck their tongues and believe this is evidence of the "well-documented" spread of hysteria.

As Dir Sci & Med Outreach, I've talked to more and more clinicians who have ME, and the stigma they experience from their peers is really sobering.
 
Hutan said:
An ugly term based on a stupid idea. Any number of conditions get worse when someone is emotionally stressed. It doesn't mean there isn't an underlying biomedical problem.
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Let's say that ME symptoms could be brought on by a severe enough emotional challenge or trauma.

Even accepting this premise, there is literally no evidence to say that resolving the emotional trauma will repair the biological damage.

I'm not sure why more people don't point this part out. Except that it may reinforce the wrong idea, I suppose.
 
chrisb said:
@JaimeS how far back are you wanting to go. This is all over the early literature. Are you looking for earliest attributions?
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I want proof people are still saying/citing it.

It's so damned terrible.

The impact this has on the clinician’s ability to address ME symptoms is incalculable. Treatable comorbidities exist, and palliative treatments exist, and clinicians ignore them to their patients’ detriment.

And the potential harm caused in the case of an early misdiagnosis of ME is potentially fatal. Cancer, Sjorgen’s, MS, and mitochondrial disorders have all been misdiagnosed as ME. One study found that 30% of people with MS were diagnosed with chronic, severe fatigue or CFS before an eventual diagnosis of MS. Soooo once you get a diagnosis of ME, your doc should stop looking beyond CBC, though, right?

In the event that ME is correctly diagnosed, there is no biological law that guarantees that a person can have only one disease over their lifetime. Sooooo once someone has ME, they can never get another illness?

It's just so clearly engineered to save the UK money and save clinicians the hassle of bothering to figure out what's wrong. Unconscionable.
 
chrisb said:
…… and it is known that in patients with severe chronic fatigue a skilled interview is more likely to provide information of use to the physician than further sophisticated investigations (Manu et al 1989a; Kroenke et al1988; Valdini et al,1989)
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Well, in the late 1980s I might have even agreed. That is to say, perhaps a clinician could learn more from patient report than the testing that was widely available at the time, which was expensive and didn't yield a great deal in the way of answers.

chrisb said:
Does this cure PVFS? Probably not. Cognitive behavioural therapy as outlined above is intended to increase functional activity, and to decrease the profound restrictions imposed by the illness...…..Nevertheless, as in so much of medicine, our approach remains a rehabilitative, rather than a directly curative, one...…..There is little doubt that PVFS is a heterogenous condition (Swartz, 1988) so it is to be expected that our approach will not be relevant to all. Further work will be needed to ensure that the appropriate patient receives the appropriate treatment.

@p329

Where did it all go wrong?
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You know, many of them did start off far more reasonable. The longer they worked in the same field, the more intractable they became.

The most glaring examples are Wessley and Lloyd, IMO. I stumbled across Lloyd's diagnostic criteria for ME the other day and it was so commonsense and plausible that I thought he was honestly some other guy than the Lloyd I knew.
 
Lucibee said:
@JaimeS - Have you seen this thread? : https://www.s4me.info/threads/abnormal-illness-behaviour-and-the-missing-citations.6174/
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No -- thank you!

Jenny TipsforME said:
Peter White said about not doing tilt table test, though gave the reason it was too demanding for us

https://books.google.co.uk/books?id=lXcVAgAAQBAJ&pg=PA10&lpg=PA10&dq=peter+white+tilt+table&source=bl&ots=LkxNmA9l28&sig=UgrdcTszXY64qu-bcg22F4qfhJ4&hl=en&sa=X&ved=2ahUKEwixqfLGjcLeAhXRY8AKHUjcAM4Q6AEwDHoECDQQAQ#v=onepage&q=peter white tilt table&f=false

That says 2007 though I have in my mind this idea of explicitly not testing orthostatic intolerance goes back to the mid 90s.
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Aaaahhhhh. For heaven's SAKE. It's so EASY to test for OI. And there are treatments! If the standard ANS panel is too demanding, take a page out of Bateman's book and use the NASA lean test!

And I HAVE to say: temporary ANS test too demanding.

GET? Totally the right idea. :banghead::banghead::banghead:
 
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