Action alert: Fri 6 March: register on reddit to upvote Dr Mady Hornig to the front page & ask qns

J

jamie

Messages
47
I wont be able to get there in time but some questions I would love to see answered... if if she agrees with the OMI conclusion that any doctor can diagnose this disease with just the new criteria given, without the tests ME/CFS experts normally order?

Also, does she believe any doctor should be able to treat this disease as the OMI has stated by treating the symptoms like any other patient? In the ME/CFS primer there is a warning that many patients have adverse reactions to medications and need to use caution. We are easy to harm and I did not hear this mentioned when the OMI was saying that all doctors can treat this.

This is such a complex disease to treat would it not be better to create centers for excellence and train new experts? I feel like no doctor would be able to treat this disease without seeing many patients of this disorder. And 9 out of 10 would not want to give the time necessary.

So if anyone is interested in asking any or all of this please do.

I just know it took me traveling to an expert to get any good tests done and I spent 15 years looking before that happened. I think of all the drs who made me so much worse because we were both ignorant to the harm of doing too much too fast with medication. Not to mention the yahoos who just don't like or believe this disease.

I saw an interview with Dr Peterson where he said he was worried about who was going to take care of us once all the pioneers retired, We need to get new doctors studying this while they are still around to teach.
 
J

jamie

Messages
47
Soundthealarm21

You're right, I wasn't really thinking in those terms.

I suppose It's been on my mind since I saw the OMI briefing and I want to know what the ME clinicians think. but she's not a clinician?

6a00d8341bf80c53ef015390e305b6970b-320wi.jpg
 
Soundthealarm21

Soundthealarm21

Senior Member
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420
Location
Dallas, TX
jamie said:
Soundthealarm21

You're right, I wasn't really thinking in those terms.

I suppose It's been on my mind since I saw the OMI briefing and I want to know what the ME clinicians think. but she's not a clinician?

6a00d8341bf80c53ef015390e305b6970b-320wi.jpg
Click to expand...


As I said, I don't know her, but to my knowledge she is a researcher at Columbia. I'm not sure how much she'd know about the IOM topic.
 
SOC

SOC

Senior Member
Messages
7,849
jamie said:
Soundthealarm21

You're right, I wasn't really thinking in those terms.

I suppose It's been on my mind since I saw the OMI briefing and I want to know what the ME clinicians think. but she's not a clinician?

6a00d8341bf80c53ef015390e305b6970b-320wi.jpg
Click to expand...

Dr Hornig is not a clinician at all. She is a medical researcher. She is unlikely to be fully up to speed on all the politics of ME/CFS/SEID. I doubt she knows much about diagnosing ME/CFS/SEID.
 
Kati

Kati

Patient in training
Messages
5,497
jamie said:
I wont be able to get there in time but some questions I would love to see answered... if if she agrees with the OMI conclusion that any doctor can diagnose this disease with just the new criteria given, without the tests ME/CFS experts normally order?

Also, does she believe any doctor should be able to treat this disease as the OMI has stated by treating the symptoms like any other patient? In the ME/CFS primer there is a warning that many patients have adverse reactions to medications and need to use caution. We are easy to harm and I did not hear this mentioned when the OMI was saying that all doctors can treat this.

This is such a complex disease to treat would it not be better to create centers for excellence and train new experts? I feel like no doctor would be able to treat this disease without seeing many patients of this disorder. And 9 out of 10 would not want to give the time necessary.

So if anyone is interested in asking any or all of this please do.

I just know it took me traveling to an expert to get any good tests done and I spent 15 years looking before that happened. I think of all the drs who made me so much worse because we were both ignorant to the harm of doing too much too fast with medication. Not to mention the yahoos who just don't like or believe this disease.

I saw an interview with Dr Peterson where he said he was worried about who was going to take care of us once all the pioneers retired, We need to get new doctors studying this while they are still around to teach.
Click to expand...
Hi @jamie I am sure you meant IOM (Institute of Medicine) and not OMI (Open Medicine Institute)
 
J

jamie

Messages
47
Yes, SOC and Soundthealarm21 I realize I made a mistake and tried to let Emily Litella (Gilda Radners character who is always going on about something she totally misunderstood and makes a fool of herself, then realizing her mistake says "Never mind" for those of you who aren't old and from the US who missed it) express how dumb I felt.


And Kati, the funny thing is I just received an email from the OMI foundation about a donation that was made in my name. They were so nice! And I actually was thinking hard as I typed that out and still messed it up.

So that's my cue to stop writing anything,

Sorry for pushing this thread in a wrong direction.

Good luck tomorrow.
 
SOC

SOC

Senior Member
Messages
7,849
jamie said:
Yes, SOC and Soundthealarm21 I realize I made a mistake and tried to let Emily Litella (Gilda Radners character who is always going on about something she totally misunderstood and makes a fool of herself, then realizing her mistake says "Never mind" for those of you who aren't old and from the US who missed it) express how dumb I felt.
Click to expand...
:)

The Emily Litella reference was too subtle for my late-day, ME-fogged brain, lol! So I guess I need to join you (and Emily) in "Nevermind". ;)
 
Soundthealarm21

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
jamie said:
Yes, SOC and Soundthealarm21 I realize I made a mistake and tried to let Emily Litella (Gilda Radners character who is always going on about something she totally misunderstood and makes a fool of herself, then realizing her mistake says "Never mind" for those of you who aren't old and from the US who missed it) express how dumb I felt.


And Kati, the funny thing is I just received an email from the OMI foundation about a donation that was made in my name. They were so nice! And I actually was thinking hard as I typed that out and still messed it up.

So that's my cue to stop writing anything,

Sorry for pushing this thread in a wrong direction.

Good luck tomorrow.
Click to expand...

Lol I didn't get the reference, but I thought the expression in the photo was great! Gave me a good laugh!
 
Soundthealarm21

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
I'm setting my alarm for 7 (central time) and will force myself up for an hour or two to help upvote the thread and post comments/questions, and possibly answer questions on here about Reddit if anyone has any.

Are there any questions that people would like to me ask (If they don't have their own reddit account, too ill to participate at that time, etc)?
 
aimossy

aimossy

Senior Member
Messages
1,106
@Soundthealarm21
Thank you for offering to post peoples questions from here. If any questions turn up on Microbe Discovery Facebook page we will paste them here if that's OK with you? Your kindly offering to do this so would leave it up to you what you choose to post. This is really appreciated!
 
Soundthealarm21

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
Yes, please post them here. When I wake up I'll come have a look here and see what we've got. I've already got my question formatted and saved in word so no hassle at 7am ;) Haven't been up that early since this disease forced me out of school lol!

I will need people's help getting the questions upvoted. My reddit username is also soundthealarm21 and to find my page go here www.reddit.com/u/soundthealarm21 and then upvote the questions I put into the thread tomorrow morning.
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
So I've clicked the up arrow on Mady's thing and the arrow has turned red - is that all that should happen? Should I be seeing numbers next to that arrow to show how many votes it's getting?
 
Soundthealarm21

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
Sasha said:
On somebody else's AMA that I looked at yesterday, the AMA itself had numbers by that arrow, and so did individual questions. Why aren't we seeing those? Will they pop up at 1pm?
Click to expand...

That works for every single post on reddit. The numbers will not pop up until roughly an hour after the post has been created so nothing to worry about.

You can keep a look at the points (called karma) on the top right as highlighted in the picture below.
Reddit AMA Karma.jpg
 
DanME

DanME

Senior Member
Messages
289
For the first couple of hours the numbers are blocked to avoid followers, who just upvote for popularity. :) You will see the numbers later...just upvote the questions, you like. (and downvote trolls)
 
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