"Do doctors understand test results" - layperson's article explaining relative vs absolute risks etc

[Tired of being sick]

The really important number to monitor, for your own purposes, is heart rate recovery time. This automatically covers a number of problems which doctors typically consider separately. If you are deconditioned, this time will be unusually high, and it will drop as you improve. If you become sick, HR recovery will demonstrate a reduced capacity for aerobic exercise. Our problem is that not only will it be high to begin with, it will also remain high despite attempts at regular exercise.

This is much easier to measure than a 2-day CPET. It will guide you to do the best you can tolerate in your current condition. The rule is simple: if HR recovery time increases, your exercise is too intense; if HR recovery time decreases, you are gaining ground within an exercise envelope you can tolerate. During an episode of PEM, HR excursions while exercising are greater and recovery will be slower. This is the only simple objective measure I know for PEM.

If doctors measured this number, and believed it, there would be far less argument about PEM or PENE. Instead they insist that high HR and long recovery times mean we are not getting enough exercise, and talk about will power. If they were looking at the effect of exercise on HR recovery times, they could quickly recognize how narrow the gap is between our thresholds for useful exercise and PEM. For some the gap is non-existent.

The problem here is that if they are confronted with numbers which violate their preconceptions they insist we must be lying or cheating. After all, how often are doctors' ideas proved wrong in medical journals?

If I shower at least 3 times a week
Well then
Why am I not "conditioned" to take a simple shower?

No such thing as conditioned in my vocabulary..........

 

[Tired of being sick]

All you have to do is observe ANY very young Dr. in order to know
how "puppetized" the CORPORATE Medicine/"Insurance industry" has become.....

[A]ll they can say is NO!

You'd get a larger vocabulary out of a Gawddamned parrot.......

 

[MeSci]

The really important number to monitor, for your own purposes, is heart rate recovery time. This automatically covers a number of problems which doctors typically consider separately. If you are deconditioned, this time will be unusually high, and it will drop as you improve. If you become sick, HR recovery will demonstrate a reduced capacity for aerobic exercise. Our problem is that not only will it be high to begin with, it will also remain high despite attempts at regular exercise.

This is much easier to measure than a 2-day CPET. It will guide you to do the best you can tolerate in your current condition. The rule is simple: if HR recovery time increases, your exercise is too intense; if HR recovery time decreases, you are gaining ground within an exercise envelope you can tolerate. During an episode of PEM, HR excursions while exercising are greater and recovery will be slower. This is the only simple objective measure I know for PEM.

If doctors measured this number, and believed it, there would be far less argument about PEM or PENE. Instead they insist that high HR and long recovery times mean we are not getting enough exercise, and talk about will power. If they were looking at the effect of exercise on HR recovery times, they could quickly recognize how narrow the gap is between our thresholds for useful exercise and PEM. For some the gap is non-existent.

The problem here is that if they are confronted with numbers which violate their preconceptions they insist we must be lying or cheating. After all, how often are doctors' ideas proved wrong in medical journals?

Thanks, @anciendaze - that is interesting and useful, and I have saved the info.

 

[MeSci]

Won't they just put it down to stress, and maybe come up with some Freudian BS like an aversion to taking your clothes off or to water?

or maybe a phobia acquired after seeing the film 'Psycho'!

 

[Esther12]

This stuff is even more problematic with the prejudices and quackery around CFS:

There are three other questions Gigerenzer advises patients to ask doctors to ensure they get all the facts:

• "What are the alternatives?"
• "What's the benefit and what's the harm?"
• "Please tell me this in terms of absolute numbers. If 100 take this medication and 100 people don't, what happens after five years?"

Once they get the answers it is up to them to make up their own mind about treatment, he says.

Dr Glyn Elwyn at the Dartmouth Center in the US, shares this zeal for shared decision-making, but has found that even educated patients feel uncomfortable asking their doctors too many questions or questioning their recommendations, for fear of being labelled "difficult".

He encourages patients to ask questions in a way that doesn't antagonise doctors or put them on the spot. "Framing it in such a way as, for example: 'I happen to have been doing some research. I know there is a controversy here. You may not know this immediately but could you guide me towards some reading?'"

But if a clinician dodges a question or gets angry, he says, patients should switch doctors.

As for the doctors, Elwyn recommends they come clean when they don't know something, and make use of tools like option grids - which clearly lay out treatment options and their consequences - to work through difficult decisions with patients.

"It's surprising that in the 21st Century, many still think of doctors as Gods and you don't ask God," says Gigerenzer.

"A physician is someone who can help you but also someone you need to challenge in order to get the best treatment."

 

[MeSci]

This stuff is even more problematic with the prejudices and quackery around CFS:

There are three other questions Gigerenzer advises patients to ask doctors to ensure they get all the facts:

• "What are the alternatives?"
• "What's the benefit and what's the harm?"
• "Please tell me this in terms of absolute numbers. If 100 take this medication and 100 people don't, what happens after five years?"

Once they get the answers it is up to them to make up their own mind about treatment, he says.

Dr Glyn Elwyn at the Dartmouth Center in the US, shares this zeal for shared decision-making, but has found that even educated patients feel uncomfortable asking their doctors too many questions or questioning their recommendations, for fear of being labelled "difficult".

He encourages patients to ask questions in a way that doesn't antagonise doctors or put them on the spot. "Framing it in such a way as, for example: 'I happen to have been doing some research. I know there is a controversy here. You may not know this immediately but could you guide me towards some reading?'"

But if a clinician dodges a question or gets angry, he says, patients should switch doctors.

As for the doctors, Elwyn recommends they come clean when they don't know something, and make use of tools like option grids - which clearly lay out treatment options and their consequences - to work through difficult decisions with patients.

"It's surprising that in the 21st Century, many still think of doctors as Gods and you don't ask God," says Gigerenzer.

"A physician is someone who can help you but also someone you need to challenge in order to get the best treatment."

Of course there is a fundamental problem in that, if someone is seeking treatment, s/he has an illness. Being ill can seriously impair one's ability to think. It's hard enough to remember to tell doctors everything and remember what they said without also having to tread on eggshells trying to get them to do what they are supposed to do anyway.

Vaguely on-topic, there was a BBC Radio 4 programme last night which included an item on recording appointments with doctors. You can listen to it here. Sorry but I can't recall where that item came in the programme. I do, however, recall shouting at the radio that I would prefer to have the info ON PAPER (that's me shouting! ).

In most professional practices this is what customers get. Why are health services so primitive by comparison?

Even if it might not be possible for a doc to personally record his/her info for patients in writing/print, there is software which can transcribe speech, and the doc could just have a look through the transcript to check for errors before giving it to the patient.

I'm sure it would save money in the long term, as patients would make fewer mistakes with their medicines and appointments and wouldn't have to do what I often do, which is to phone the doc after the appointment for clarification on things.

 

[anciendaze]

If I shower at least 3 times a week
Well then
Why am I not "conditioned" to take a simple shower?

No such thing as conditioned in my vocabulary..........

At least you are able to stand up and shower. I was reduced to sit-down baths years ago.

I suspect we are dealing with two distinct meanings of "conditioned" one used in exercise physiology, and quite a different one in behaviorist psychology. When people pull linguistic bait-and-switch, it is always appropriate to be cautious about buying what they are selling.

 

[alex3619]

The really important number to monitor, for your own purposes, is heart rate recovery time. This automatically covers a number of problems which doctors typically consider separately. If you are deconditioned, this time will be unusually high, and it will drop as you improve. If you become sick, HR recovery will demonstrate a reduced capacity for aerobic exercise. Our problem is that not only will it be high to begin with, it will also remain high despite attempts at regular exercise.

This is much easier to measure than a 2-day CPET. It will guide you to do the best you can tolerate in your current condition. The rule is simple: if HR recovery time increases, your exercise is too intense; if HR recovery time decreases, you are gaining ground within an exercise envelope you can tolerate. During an episode of PEM, HR excursions while exercising are greater and recovery will be slower. This is the only simple objective measure I know for PEM.

I think @SOC and I had a similar discussion here some time ago, but looking at breathing rate. If you are breathing heavily, even if you are not doing much, its a problem.

People with ME have elevated lactic acid, and possibly carbonic acid as well. Both these can drive heart rate and increased breathing I suspect. The body is attempting to increase oxygen and carbon dioxide exchange in the blood. Sadly this does not translate to our muscles for some reason, as muscle lactate remains persistently high for some time.

 

[xchocoholic]

I only have breathing problems when I'm upright. (Eyes rolling) :/

Seriously tho, how much of this is due to OI ?