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What some doctors really think of us

Cheesus

Senior Member
Messages
1,292
Location
UK
Fair warning: this is likely to make you feel very angry. If you're not up to that, I suggest you do not continue with this.

Here is a group of doctors discussing patients with ME: https://reddit.com/r/medicine/comme...rse_on_treatment_for/?st=j8s3jj52&sh=e85049d9

Some highlights:

Wow, I forgot that they had to go and label CFS as myalgic encephalomyelitis. Must be that cold I am getting over.... I mean my sinupharyngopulmonitis.

Easily my least favorite patients to encounter. I had someone with CFS tell me last week that 'doing the dishes' should be considered exercise, that doing so depletes all her energy and then subsequently she needs to sleep for 14 hours. Towards the end of a totally unproductive and long-winded visit full of tears, she of course perks up and hands some disability forms to my attention (as is tradition)

The worst thing about this is that they cause people who go to work and generally live regular lives but still live in a state of chronic and unexplained fatigue to be ignored and written off.
 

A.B.

Senior Member
Messages
3,780
One doctor wrote:
I’m very familiar with the science around CFS and based on lots of actual research believe it is a form of somaticized depression.

This poor guy is in for a shock when he finds out that psychotherapy and exercise do nothing beyond a small placebo effect.
 
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Wonko

Senior Member
Messages
1,467
Location
The other side.
Very good evidence of why we need a disease mechanism.
Or battle axes, obviously lightweight robot battle axes, due to our physical limitations and the huge amount of work needed to rectify this unfortunate situation.

I'd suggest we have at least 3 teams, one to work on the robot battle axes and one to work on a disease mechanism. With the 3rd team doing the vital job of wandering in and out of rooms trying to figure out why.
 

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina

Hajnalka

Senior Member
Messages
910
Location
Germany
Thanks @Cheesus!

Some more gems:
The worst thing is they're the biggest contributor to my chronic fatigue.

I see nothing disproving that it's a psychiatric illness.

My favorite phrase in clinic is "see you in a year".

So I have trained and now work in the South. Never heard of this. Are these usually diseases of the Northeast?
:lol:

Oh good, something to legitimise these patients. I look forward to be told about this by our CFS regular the next time they are in the department.

Largely because of pressure from extremely vocal groups who feel mental illnesses are unimportant or denigrating. The attitude of many of these campaigners is a slap in the face to sufferers of other mental illnesses.

Finally, why are some CFS patients so angry about the idea that there is a primarily mental health component to the illness (with an added issue of deconditioning being a vicious cycle, with both deconditioning and social isolation contributing enormously to mental ill health themselves)? Do you think schizophrenia patients' illness is "all in their heads" in the derogatory sense? Do you think less of people diagnosed with bipolar or anorexia?

And most of them defend PACE and GET.
 
Messages
13,774
Perhaps also a useful illustration of the sort of tactics in these sorts of debate that can backfire. When engaging with those unfamiliar with the controversy, it's best to be very cautious and slow in the claims made. Lots of people don't really engage in discussion or debate, but can have their own prejudice or ignorance lead them to dismiss a point which they do not really understand the context to.

The use of 'myalgic encephalomyelitis' label can lead to problems, particularly when doctors are not aware of how this label can protect patients from the financial discrimination that can come with the 'CFS' label.

It was interesting how a number of them seemed vaguely aware of the PACE scandal, but had really confused ideas about what was actually going on there. I wonder where they get their info?

I thought that generally the quality of comments from patients was really good though (particularly seeing as patients aren't meant to need to spend their time trawling medical research journals), so don't want to sound like I'm being critical of them. Some of the comments from medics were painfully ill thought through, but I was just thinking if any lessons could be learnt from the way some of them responded.
 

Hajnalka

Senior Member
Messages
910
Location
Germany
This is a quote from the Solve conference yesterday. I thought it fits in well with this thread. Although Susan Levine names the rural Midwest in the US, I think the quote could be applied to the situation worldwide. When I wrote to the nearest ME organization to ask for any doctor in my state (who doesn't have to know much about the disease, just someone who would be willing to take me seriously and treat symptoms), they said they don't know any.
 

Inara

Senior Member
Messages
455
Thanks for this thread!

I met too many of those doctors. Problem is you cannot speak with them as with grown-ups because they do not behave like grown-ups. They do not think reasonably, don't accept scientific and factual arguments, but react affectively. Fear is very prominent. So they inforce an up-down hierarchy, where they position themselves as "up". The system gives them this power, but knowledge and the ability to think is not on their side. I therefore lost all respect for most of them.

I sometimes think axes are the only way against stupidity paired with arrogance and some degree of power. :D I learned that discussing with stupid human beings, especially with doctors, is a futile thing. Better the axe. :) joke.

I chose to manipulate and use them as best as possible. I have a goal.

I actually sued one of those doctors. I do not accept damaging behavior against myself or others, and I do not accept the system behind that.
 

Inara

Senior Member
Messages
455
Someone should let that doctor know that isn't how medicine works. Things aren't a psychiatric illness until proven otherwise.

First, it must be understood what "psychiatric illness" actually means, what's it used for and that it isn't an illness in the medical sense. Its evolvement from past to now has to be considered, too. Short, "psychiatric illness" means your a schmock, simulant, grouser, not conform...someone who should be disposed of. It's also preferably used to belittle someone and to say in a mean way "you are stupid, no one should listen to you".

Second, my experience is that most doctors just cannot think, let alone think scientifically. We confront them with this inability. That scares them and they either react with fight or flight. They have to restore how great they are.

This may seem injust, because there really ARE excellent doctors. I know some, I have high respect for them and the cooperation is very profitable. These doctors do not only think, they are curious. I pity everyone who can't be curios anymore.

But most are just a shame. Sorry.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
This may seem injust, because there really ARE excellent doctors. I know some, I have high respect for them and the cooperation is very profitable. These doctors do not only think, they are curious. I pity everyone who can't be curios anymore.
My guess is about ten percent of doctors. They are the ones who can learn from the latest research on ME. The rest do not engage with cutting edge research.