• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Reddit AMA with Dr Mady Hornig (March 6th at 1pm)

SB_1108

Senior Member
Messages
315
Dr Mady Hornig will be answering questions re ME/CFS on Reddit Science.
Friday 6th March, 1pm Eastern Time:
http://www.reddit.com/r/science/

People should be able to post questions and comments starting in the late morning, Friday, and Dr Hornig will start answering questions at 1pm Eastern Time.

I think we should get a specific weblink for the discussion nearer the time.

Note that, as far as my understanding goes, reddit users get to vote on the questions that Dr Hornig will eventually answer. Users can ask questions and also vote questions up and down on a list. I believe that the top questions on the list will be answered. So, getting involved will help get decent questions asked and answered.

I just wanted to make sure this message by @Bob was seen by everyone! This is a huge opportunity to get major exposure for CFS/ME. If you have not made a Reddit account PLEASE SIGN UP, ask questions, then upvote/downvote questions according your preference and comment as necessary!
 

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
Also, people, if nothing else make an account and UPVOTE the thread when it gets published so that we can push this to the front page and get maximum exposure.

For those of you not aware, Reddit is one of, if not the, largest link sharing/forum based websites in the world. Hundreds of thousands to millions of people browse reddit every day. If we can help get this thread to the front page it could really help get us some awareness.
 

oceiv

Senior Member
Messages
259
I hope the reddit community is a little more open minded than this guy I encountered on there today:

""Chronic fatigue syndrome" AKA: tired from working a 10 hour shift. Cool."

:bang-head::bang-head::bang-head::bang-head:

Hopefully this will be a chance to get some awareness out there.

Reddit is known for having a pretty harsh environment. Just know this in advance and ignore the trolls. I only go there when following links. Would it be helpful to suggest questions in advance here? That way, if people can attend on Friday, but don't have questions, they can get some ideas? I'm not well at that time of day, but will see if I can get someone to attend and upvote good questions..
 

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
Reddit is known for having a pretty harsh environment. Just know this in advance and ignore the trolls. I only go there when following links. Would it be helpful to suggest questions in advance here? That way, if people can attend on Friday, but don't have questions can get some ideas? I'm not well at that time of day, but will see if I can get someone to attend.

Haha yes I know it is doesn't make it any less frustrating. I've been on reddit for almost 3 years now. I'm just hoping the trolls will be at a minimum, and they usually are on a subreddit like /r/science. The mods get rid of off topic content.
 

oceiv

Senior Member
Messages
259
Haha yes I know it is doesn't make it any less frustrating. I've been on reddit for almost 3 years now. I'm just hoping the trolls will be at a minimum, and they usually are on a subreddit like /r/science. The mods get rid of off topic content.

So true. The ignorance out there (in general) is highly frustrating. When I read one recent ME/CFS article recently. I saw the here that that article's comments were mostly negative and had to practice some serious self-restraint and not click on them. I'm trying to be on a low-stress diet. How in the heck you've survived on Reddit for 3 years is a miracle to me. ;):lol:

I'm just hoping the trolls will be at a minimum, and they usually are on a subreddit like /r/science. The mods get rid of off topic content.

Good to hear. If it is on-topic-trolling, do the mods get rid of it?
 

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
So true. The ignorance out there (in general) is highly frustrating. When I read one recent ME/CFS article recently. I saw the here that that article's comments were mostly negative and had to practice some serious self-restraint and not click on them. I'm trying to be on a low-stress diet. How in the heck you've survived on Reddit for 3 years is a miracle to me. ;):lol:



Good to hear. If it is on-topic-trolling, do the mods get rid of it?

I don't use reddit for the disease or advocacy or anything like that. The only reason I even found that comment was because @mallen12132 happened to be involved in it. I use it to keep up with sports and laugh mainly. So it's pretty stress free on that end. There is an endless amount of cool stuff on that website and since I'm ill I use it a lot.

Mods will get rid of anything that is a joke or trolling. They only want serious discussion instead of low effort puns. That's specific for the /r/science subreddit.
 

SB_1108

Senior Member
Messages
315
Reddit is known for having a pretty harsh environment. Just know this in advance and ignore the trolls. I only go there when following links. Would it be helpful to suggest questions in advance here? That way, if people can attend on Friday, but don't have questions, they can get some ideas? I'm not well at that time of day, but will see if I can get someone to attend and upvote good questions..

I've been on Reddit for several years but mainly just read/lurk because posting can be stressful. I'd love a friendly critique of my questions prior to posting (to hopefully keep the trolling to a minimum).

Questions for Dr. Hornig:
  1. What is the current status of the CFS/ME microbe study?
  2. Because the crowd funding study only raised about $200k, how will you and Dr. Ian Lipkin obtain the remainder of the funding necessary to complete the study?
  3. CFS/ME expert, Dr. De Meirleir has found the positive effects of fecal transplants on CFS/ME patients are only temporary because he believes the transplants were not treating the core pathology and that bad flora regrows back in patients over time. Hypothetically, if the microbe study is able to identify a pathogen as the culprit for a majority of CFS/ME patients, why haven’t current treatments such as probiotics, antibiotics, and fecal transplants shown to be more effective managing the disease?
If someone wants to steal my questions, thats cool too... Its all about the answers!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Also, people, if nothing else make an account and UPVOTE the thread when it gets published so that we can push this to the front page and get maximum exposure.

For those of you not aware, Reddit is one of, if not the, largest link sharing/forum based websites in the world. Hundreds of thousands to millions of people browse reddit every day. If we can help get this thread to the front page it could really help get us some awareness.

I've only vaguely heard of reddit and didn't realise what an opportunity this is. I think we need a separate thread titled something like 'Action alert: Fri 6 March: register on reddit to upvote Dr Mady Hornig to the front page and ask her questions', with an explanation of what reddit is (what you just said, basically), a link to the registration page and explanation that you don't need email registration, and instructions what to do: with a link back to this thread for discussion as the main thread.

And I think we need to keep bumping it up the forums so it's visible.

Is anyone who understands reddit willing to do this?
 

aimossy

Senior Member
Messages
1,106
Some people may struggle learning about how to use Reddit in time. I am wondering if people post questions on here that a kind person might put a selection of them onto the reddit? The information from the reddit will probably be shared after the event for many to see.
 

SB_1108

Senior Member
Messages
315
I've only vaguely heard of reddit and didn't realise what an opportunity this is. I think we need a separate thread titled something like 'Action alert: Fri 6 March: register on reddit to upvote Dr Mady Hornig to the front page and ask her questions', with an explanation of what reddit is (what you just said, basically), a link to the registration page and explanation that you don't need email registration, and instructions what to do: with a link back to this thread for discussion as the main thread.

And I think we need to keep bumping it up the forums so it's visible.

Is anyone who understands reddit willing to do this?

Mods - Can we change the title of this current thread?

Some people may struggle learning about how to use Reddit in time. I am wondering if people post questions on here that a kind person might put a selection of them onto the reddit? The information from the reddit will probably be shared after the event for many to see.

This website is pretty helpful: http://mashable.com/2012/06/06/reddit-for-beginners/
 

aimossy

Senior Member
Messages
1,106
Thanks because I'm struggling to understand how to use it properly and many get intimidated with new things and cogs find it tough. I will check out that link.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Mods - Can we change the title of this current thread?



This website is pretty helpful: http://mashable.com/2012/06/06/reddit-for-beginners/

To be honest, I think we need to start a new, separate thread on that topic that has instructions in its first post - I don't think we can expect people to plough through all the discussion on this thread. I think we'll have lost them.

We'll be issuing a call to action (hence the 'Action alert' bit) and the first post needs to be that call to action.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I've only vaguely heard of reddit and didn't realise what an opportunity this is. I think we need a separate thread titled something like 'Action alert: Fri 6 March: register on reddit to upvote Dr Mady Hornig to the front page and ask her questions', with an explanation of what reddit is (what you just said, basically), a link to the registration page and explanation that you don't need email registration, and instructions what to do: with a link back to this thread for discussion as the main thread.

And I think we need to keep bumping it up the forums so it's visible.

Is anyone who understands reddit willing to do this?

I'm doing this now and I'll post a link here when the new thread is ready.