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.

 

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.

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

 

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.

 

I think the proper scientific terminology is a mutual admiration society, aka a circle jerk.

 

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.

 

It has a very strong mystical "faith healer" vibe. "I can feel your mental anguish beneath my hovering hands".

No wonder they are fans of Phil Parker.

 

"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.

 

OK I see three pages of replies and before I respond to them individually I want to thank everyone straightaway for being so amazing.

 

Bless you, sir.

Wessley and Per Fink. Not exactly a surprise.

 

Always with the studies from the '90s. It's like there was a dry spell in BPS non-science from 2000-the PACE trial.

 

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.

 

Amazing @Forbin, it was that exact thread that I was thinking of when I asked this question, you're incredible.

 

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.

 

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.

 

Oh.

That's worse.

 

Not. Without. LOOKING!

 

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.

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.

 

No -- thank you!

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.

 

This is becoming a meme. I've heard this multiple times in the past few weeks! I wonder what's led to an increase in this suggestion (tongue-in-cheek or not) in chronic illness community!

 

I think the implication is that, by that stage, it will be obvious. Like, really obvious. *spurt spurt*