GOING TO WAR WITH MY G.P. SURGERY

Empty

Well-Known Member
Lets take them down one by one until the next M.E. patient that shows up in front of them makes them quiver with updated M.E. science, respect, kindness and helpfulness!!
 

Who Me?

Well-Known Member
I had a doc appointment last week with a new integrative doc who says she knows some about ME. yet everything I said she either ignored (how many times do I have to say dysautonomia before she acknowledges it?) or wants to refer me to another doc. Not sure what a gyno has to do with swollen lymph nodes. She never touched me once.
 

Empty

Well-Known Member
Are you sticking with that integrative doctor? If she knew about ME she should know about dysautonomia. This is the thing, they just pretend to know about it so they can bullshit clients.
 

Empty

Well-Known Member
Anyone have any links on how to become an energy vampire? Thought I could learn this skill and just drain the shit out of them when I go see them.
Sure as hell beats them draining me with all their bullshit.
 

Empty

Well-Known Member
Now all I have to do to prepare is stay in bed for days resting and then it will be time to get up and go for a fight.
 

Who Me?

Well-Known Member
Are you sticking with that integrative doctor? If she knew about ME she should know about dysautonomia. This is the thing, they just pretend to know about it so they can bullshit clients.
I see a Naturopath who treats my ME. My hope with this doc is that she knows enough alternative stuff (histamine for example) and that she would work with the NP to order labs that my insurance won't pay for otherwise. She did do a Genova poop test which I wanted so that is good. She doesn't get that my BP is stupid high when I go out because of the amount of energy it takes and not because I have white coat syndrome. Just lots of little things she says that I wonder about.

She knows much less than I think she realizes (she clearly does not get my sleep issues) but until I find someone else (a unicorn doctor) I'll stick with her since I can't travel and there are slim pickings in my area. If I wanted to go to a ton of other specialists then I would have. Docs just don't care and medicare is on their backs.

I'll give her some time.
 

Empty

Well-Known Member
I will have the Unicorn Doctor any day. Ahhh feel better already :)

Hope it works out for you @who me

Dreadful shortage of knowledgeable M.E. doctors. I think that is something that should be being worked on as much as the research - re-training all Doctors currently out working out there, or at least one in every practice with mandatory, M.E. science and info. Dr. Ramsay seminars for G.P.s that would be great. Just so that Doctors have understanding. This could be implemented immediately.
 

Who Me?

Well-Known Member
Not much choice for now @Empty

I don't even care if the doc isn't an ME specialist. I just want someone who is open-minded, not afraid to RX stuff and understands at a basic level how complex it is. How all the body systems are involved. That you can't just treat one thing in a vacuum.

And don't question me when I tell you something I took didn't work. Oh and don't tell me you feel like shit too when you don't sleep but have no clue about sleep initiators and sleep sustainers. You have no idea.
 
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Empty

Well-Known Member
I know.

That is the scariest part, that they don't have a fucking clue or ability to look at all the systems involved. It is dangerous.
 

Who Me?

Well-Known Member
I told her I use suntheanine to help me get back to sleep when I wake in the middle of the night. She says it's stimulating. I said not for me. She said it could keep you up. I said not for me.

I think said baclofen should but me to sleep but it's like I took speed.

I think docs are not used to dealing with patients who have brains.
 

Who Me?

Well-Known Member
Its just not good enough is it. It is nowhere near good enough.
Exactly. I'm tired of trying to educate them.

I do think part of it is the system which limits payments and how much time they can spend with a patient.

Sigh
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Just saying.


I need a war like mentality.

Have had ENOUGH!

Wish me luck.
I hope you get a resolution that a) serves you Empty and b) brings your doctor to a new understanding of ME/CFS....Good luck!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I will have the Unicorn Doctor any day. Ahhh feel better already :)

Hope it works out for you @who me

Dreadful shortage of knowledgeable M.E. doctors. I think that is something that should be being worked on as much as the research - re-training all Doctors currently out working out there, or at least one in every practice with mandatory, M.E. science and info. Dr. Ramsay seminars for G.P.s that would be great. Just so that Doctors have understanding. This could be implemented immediately.
In fact as Suzanne Vernon pointed out - you can't grow the research without capable doctors feeding the researchers patients and providing insights into them..Both need to go hand in hand and hopefully they will.
 

Empty

Well-Known Member
We do not have any capable Doctors here in the UK. So maybe that is where research is failing.

Doctor Surgeries should be educated and up to date by now. Treatment experience should be vastly improved for ME patients but it is not. Patients are killing themselves.

Where are we going wrong? Surgeries have been given the CCC, scientific studies, the MEA purple booklet. Is it the psychobabblers influence?

Fearful of mentioning ME and instead reporting one symptom at a time to the G.P. is one problem. I think G.P.s need to be inundated with the term ME.

In fact I will pledge to use the term ME 5 times, because it makes them whince so.
 

Empty

Well-Known Member
I wish patients would stop killing themselves too. When I see that someone has killed themselves, I say, no, don't do that.
 

Who Me?

Well-Known Member
In theory you are right but I have no illusions it will happen in my lifetime. Maybe that's why I compromise and treat myself.
 

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