"My GP just asked me if I'd seen the news that ME/CFS 'isn't real'" (Twitter post)

[Dolphin]

Posted on Twitter:
https://twitter.com/sickandtiredCFS/status/661238058570878976

("stuggle" is presumably "struggle" for any non-native English speakers who are confused)

 

[SilverbladeTE]

should ask the dumb bastard if the pay cut for junior doctors isn't real, either...and whether they'll soon be cutting pay and conditions for GPs...

see how smart the sod is then!

 

[*GG*]

Wow, great Dr! bang-head:

GG

 

[minkeygirl]

My pcp still uses a flip phone so I'm safe.

 

[alex3619]

The problem is, in part, that there is definitional blurring here, and the psychogenic brigade is blurring the lines a lot.

I think we need to start with something like "every expert agrees that people with CFS are really suffering". Then maybe "CFS is such a broad diagnostic category that misdiagnosis might be on the order of 40% even if the doctor is careful, at least if they use the general CFS criteria". Then "however if you use ME criteria the misdiagnosis rate goes way down, and you can objectively measure most of the major symptoms". Point out that while CFS definitions may only be accurate, somewhat, less than 60% of the time, ME definitions using cutting edge technology seem to be accurate to 95% of the time.

The problem is the diagnostic category of CFS is invalid. Doctors mostly kind of get that I think. Some then go on to conflate the diagnostic category, which like many diagnoses is man-made, with the disease the patients have. Its more about diagnostic accuracy, but some take that too far and go into denial mode.

However as I pointed out in a recent blog, if you go from "this category is invalid" to "this disease does not exist", its such a leap of logic that if you believe it then you have to throw the DSM in the bin, as none of those are real either. Its a fallacy. Real disease, mislabelled, is still real disease. The people still deserve respect and care, its just the category that needs to be treated as speculative.

 

[Snow Leopard]

Just plain nasty! Why would a doctor say this to their patients?

 

[*GG*]

Just plain nasty! Why would a doctor say this to their patients?

Job security is not an issue? They are just an ass?

GG

 

[aimossy]

I had this happen sort of regarding a doctor saying to me that CFS wasn't a real illness. I asked her if she was a real doctor.

 

[maryb]

My pcp still uses a flip phone so I'm safe.

You're just a techno snob, nothing wrong with flip phones now your doc??that's a different story...

 

[maryb]

The doctor needs asking please find out the cause of my symptoms after giving me the wrong diagnosis. Over to you.....what an absolute a*se.

 

[Seven7]

BecuAse the psy have a campaign and succeeding. We need to amp the education and amounts or articles all the good work in the last year is burried now with all the series of well placed and thought out articles.

 

[skipskip30]

Id be tempted to put in a formal complaint if your GP is basing their diagnosis on a newspaper headline.

 

[SilverbladeTE]

BecuAse the psy have a campaign and succeeding. We need to amp the education and amounts or articles all the good work in the last year is burried now with all the series of well placed and thought out articles.

this is one reason why we NEED a criminal or civil court case against them, whether people believe it or not
because not until they are destroyed in court, will it HAMMER the message into the Public and Professional conscience.

 

[Seven7]

@SilverbladeTE I think as CFS organization we can open a case for defamation of character: literally.

 

[BurnA]

Would there be anything wrong in asking sickandtiredcfs to name their Dr. on Twitter ?

 

[Sea]

I think we need to start with something like "every expert agrees that people with CFS are really suffering". Then maybe "CFS is such a broad diagnostic category that misdiagnosis might be on the order of 40% even if the doctor is careful, at least if they use the general CFS criteria". Then "however if you use ME criteria the misdiagnosis rate goes way down, and you can objectively measure most of the major symptoms". Point out that while CFS definitions may only be accurate, somewhat, less than 60% of the time, ME definitions using cutting edge technology seem to be accurate to 95% of the time.

The problem is the diagnostic category of CFS is invalid. Doctors mostly kind of get that I think. Some then go on to conflate the diagnostic category, which like many diagnoses is man-made, with the disease the patients have. Its more about diagnostic accuracy, but some take that too far and go into denial mode.

Further to the blurring is that different doctors have different ideas about diagnosis. Some will use ME criteria but diagnose CFS "because that's what ME is called in Australia", and at the other end of the spectrum some doctors will diagnose anyone who has chronic fatigue with CFS with no regard to criteria or exclusions.