Post in /r/medicine

[frozenborderline]

https://www.reddit.com/r/medicine/c...rogenase_function_in/?st=j9jhp5y8&sh=767e8581
I made a post in /r/medicine that has the fluge/mella study. I am curious to see the discussion. welcome anyone here to go correct some comments with some education

 

[SB_1108]

/r/medicine has basically started deleting every ME/CFS Thread. I’ll be surprised if the mods keep it.

They can be particularly nasty on /r/medicine towards patients. Example: https://www.reddit.com/r/medicine/comments/73t52q/the_cdc_finally_reverses_course_on_treatment_for/

And this is what happened with Jen’s TED talk recently...
https://www.reddit.com/r/medicine/comments/76rp5v/what_happens_when_you_have_a_disease_doctors_cant/

 

[IThinkImTurningJapanese]

I looks like they'll delete it, and for good reason.

Rule 6 (personal agenda) This forum is for medical professionals to discuss issues important to them. Not for patients to try to get medical professionals to discuss their disease.

@SB_1108 The links you posted are so informative regarding the experience that we with ME/CFS have with medical professionals.

For our sake, and theirs, I'm looking forward to such cynicism being nothing more than a thing of the past.

 

[Marky90]

That reddit emphases my general impression that many in the medical profession knows jack all about what was not in their textbooks. The harassment and disbelief of patients there is pretty shocking, guess the anonymity shows what some of them really think but don`t say. It`s certainly consistent with the treatment i have been getting as soon as "ME" is mentioned. Honestly, fuck`em

 

[perovyscus]

It is a massively heterogeneous patient population with no known etiology or cure. Your next patient is in 8 minutes.

The examples you mentioned? These doctors do not just dislike CFS patients, they don't like any patients.

 

[Marky90]

That doesn`t justify how they handle and think about us at all.

 

[frozenborderline]

I'm kind of hoping that /r/medicine is not representative of doctors in general, who I know can be shitty, but maybe not that shitty?

 

[Marky90]

I'm kind of hoping that /r/medicine is not representative of doctors in general, who I know can be shitty, but maybe not that shitty?

Let`s be honest, albeit many exceptions, most people with a life dont hang out at reddit shittalking others.

 

[frozenborderline]

Let`s be honest, albeit many exceptions, most people with a life dont hang out at reddit shittalking others.

you could have ended that sentence at reddit lmao. most people with a life dont hang out on reddit... period

 

[Marky90]

you could have ended that sentence at reddit lmao. most people with a life dont hang out on reddit... period

I was about to, but then I remembered that some friends and myself do

Well, i guess that confirms it then

 

[Marky90]

"albeit many exceptions"

 

[heapsreal]

I'm kind of hoping that /r/medicine is not representative of doctors in general, who I know can be shitty, but maybe not that shitty?

Unfortunately i think it is. I think because theres no diagnostic test or treatment for cfsme they dont know what to really do. I think because depression doesnt have a diagnostic test either they lump many of these patients together and they can treat with antidepressants, if it works is another thing.

Many drs will say theres nothing abnormal on tests but they dont test much any way, a full blood count sounds thorough but??? Even when theres something abnormal on it many drs ignore it or dismiss it as irrelevant.

At the end of the day drs follow guidelines thats backed by research, they dont really make alot of their own decisions, so are basically told what to do. Issue i think is research and for drs to be taught the current research eg nk dysfunction and cytokines studies etc etc. Most have never heard of them.