The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

What some doctors really think of us

Discussion in 'General ME/CFS Discussion' started by Cheesus, Oct 15, 2017.

  1. Cheesus

    Cheesus Senior Member

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    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:

     
  2. Alvin2

    Alvin2 If humans were rational...

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    Very good evidence of why we need a disease mechanism.
     
  3. A.B.

    A.B. Senior Member

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    One doctor wrote:
    This poor guy is in for a shock when he finds out that psychotherapy and exercise do nothing beyond a small placebo effect.
     
    Last edited: Oct 15, 2017
  4. Wonko

    Wonko Senior Member

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    The other side.
    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.
     
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  5. Alvin2

    Alvin2 If humans were rational...

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    I do not understand the ax angle but apparently machine learning will solve it (from some thread a while back) hence we are already covered :D
     
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  6. Cheesus

    Cheesus Senior Member

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    As soon as we get a disease mechanism I am going to write to every single doctor that has mistreated me over the years highlighting why they are full of shit and terrible doctors. It's going to be so sweet.
     
  7. NotThisGuy

    NotThisGuy Senior Member

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    very good evidence that we Need to replace doctors with AI.
     
  8. Alvin2

    Alvin2 If humans were rational...

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    That may not work out well, dr google seems to scour data then provide the most popular evidence, a good idea in theory, a bad idea in a mischaracterized and prejudiced disease. There was a thread that mentioned this i believe, i don't have a link though
     
  9. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
  10. Joh

    Joh Inactivist

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    Thanks @Cheesus!

    Some more gems:
    :lol:

    And most of them defend PACE and GET.
     
  11. Cheesus

    Cheesus Senior Member

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

    I hope they didn't pay actual money for their medical degree. That would be embarrassing.
     
  12. Joh

    Joh Inactivist

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  13. Cheesus

    Cheesus Senior Member

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    Tom's addition of the word "some" is a fair point. I am going to edit my title.
     
  14. Esther12

    Esther12 Senior Member

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    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.
     
  15. Joh

    Joh Inactivist

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    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.
     
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  16. Inara

    Inara

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    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.
     
  17. Inara

    Inara

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    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.
     
    Last edited by a moderator: Oct 16, 2017
  18. msf

    msf Senior Member

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    Newsflash: some doctors have shit for brains.
     
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  19. alex3619

    alex3619 Senior Member

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    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.
     
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