Educating Doctors in Diagnosing ME/CFS

[Utsikt]

And doctors do? I'll claim that patients know A LOT more about ME/CFS than average GPs or even specialists by the time they are through a few.

It’s not just about knowing that ME/CFS is or isn’t, it’s about knowing about all of the alternative explanations and making a reasonable assessment of what’s most likely.

Doctors often miss the mark with BPS babble. Patients usually miss the mark with bio babble, and because we’re supposed to be so inclusive and respect everyone’s experiences, everyone have ME/CFS if they just feel they do. According to JE, the same goes for RA - lot’s of people think they have it when they really don’t.

 

[poetinsf]

everyone have ME/CFS if they just feel they do.

Well, that's not what I meant by "satisfied". You go through the standard battery of test and then decide whether you are satisfied with the diagnosis. You live through ME/CFS and its PEM, you know there is nothing like it. Doctors without the actual experience may not.

 

[Utsikt]

Well, that's not what I meant by "satisfied". You go through the standard battery of test and then decide whether you are satisfied with the diagnosis. You live through ME/CFS and its PEM, you know there is nothing like it. Doctors without the actual experience may not.

But patients that from my perspective do not at all look like they have ME/CFS still think they have PEM and the whole package because that’s what they’ve been told they have. There are so many weird descriptions of PEM and ME/CFS out there, so you’re bound to find something that fits you.

And you’ll end up potentially missing out on treatments for your actual condition. And maybe end up with hEDS, CCI and MCAS while you’re at it. The doctors will think you have a psychosomatic condition or FND, and stop checking on you because they think you’re too far gone down the rabbit hole.

That’s clearly not a good road to go down.

 

[Sean]

Fatigue and PEM are so nebulous on paper which is a huge contributor.

Especially for those wishing to twist whatever we say to their own ends.

Trouble is, things always end up being run by people who're good at running things.

And those good at convincing others they should be running things, but who are not actually any good at running things.

 

[DMissa]

Patients usually miss the mark with bio babble

I don’t think this statement should be limited to patients.

You know how much biobabble I’ve written before I learned to shut up when I’m not saying something from a position of tested experience? It gives me a stomach ache to think about.

 

[EndME]

I don’t think this statement should be limited to patients.

You know how much biobabble I’ve written before I learned to shut up when I’m not saying something from a position of tested experience? It gives me a stomach ache to think about.

Don't worry, I will continue to get stomach aches about the things I say, most of the times I speak.

 

[Utsikt]

I don’t think this statement should be limited to patients.

You know how much biobabble I’ve written before I learned to shut up when I’m not saying something from a position of tested experience? It gives me a stomach ache to think about.

At least you’re acknowledging it - the first step is to stop fooling yourself.

And I come from business management consulting - making confident statements on shaky grounds was the modus operandi in many of the sectors. I’ll stick to internal audits and projects with clear deliverables if I ever return to work.

 

[poetinsf]

But patients that from my perspective do not at all look like they have ME/CFS still think they have PEM and the whole package because that’s what they’ve been told they have.

By who? the doctors who are supposed to be in better position to assess than the patients?

And you’ll end up potentially missing out on treatments for your actual condition.

Yes, if you are misdiagnosed by the doctors.

That brings to my point. You get your diagnosis, and then you have to ultimately decide if you are satisfied with it since there is no diagnostic test to confirm the diagnosis. The main value of diagnosis is for the exclusion of other conditions after all. False positives are really what they have to watch out for and that is probably why average doctors are reluctant to hand out the diagnosis.

 

[Utsikt]

That brings to my point. You get your diagnosis, and then you have to ultimately decide if you are satisfied with it since there is no diagnostic test to confirm the diagnosis. The main value of diagnosis is for the exclusion of other conditions after all.

I thought the main point of a diagnosis is to predict future health?

And an ME/CFS diagnosis doesn’t mean that you can’t have something else - which is why regular reassessments are recommended.

False positives are really what they have to watch out for and that is probably why average doctors are reluctant to hand out the diagnosis.

That only makes sense it diagnoses are definitive, which they are not.

My point is not that all doctors are better equipped to identify probable ME/CFS than e.g. some members here, but that doctors are the only one with the potential for enough knowledge to be sure that it’s probably ME/CFS and not X, Y or Z. A layperson usually don’t know about all of the alternatives, so they will indirectly end up with loads of false negatives.

 

[poetinsf]

I thought the main point of a diagnosis is to predict future health?

I meant ME/CFS diagnosis, not diagnosis/prognosis in general.

My point is not that all doctors are better equipped to identify probable ME/CFS than e.g. some members here, but that doctors are the only one with the potential for enough knowledge to be sure that it’s probably ME/CFS and not X, Y or Z.
A layperson usually don’t know about all of the alternatives, so they will indirectly end up with loads of false negatives.

False negatives don't matter as much since there is no effective treatment anyway. And that's probably most doctors, who don't have enough knowledge or experience, are reluctant to hand out the diagnosis even when you appear to meet the criteria. (Well, at least that was my experience in this side of the pond).

"Educating" doctors so that they would hand out fewer false positives would be a good thing. But it would be a disaster if it leads to more false positives, which I suspect it would as guidelines or cookbook approach may give them a false sense of security.

 

[Utsikt]

False negatives don't matter as much since there is no effective treatment anyway.

If you actually have MS, but you feel comfortable with the suggested ME/CFS diagnosis so nobody checks for MS, then a false negative of MS would be a pretty big deal because there are treatments for the false negative diagnosis. Or Addison’s that was brought up in another thread.