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

[SpecialK82]

We'll see about that...

LOL, I'm ready

 

[Sasha]

LOL, I'm ready

Interesting crew, Special...

 

[Scarecrow]

Definitely finished now.

 

[Sasha]

Outstanding! Thanks especially to @Soundthealarm21 and @DanME and @SB_1108 and other old hands for telling us what a big deal this was and for helping us through it.

Big success, excellent questions and answers, no trolls worth mentioning.

 

[DanME]

Def hoped, that she would answer more questions. But I think, the answers she gave were very interesting and detailed.

But nevertheless, this was a huge success for general awareness. We habe been on the front page for hours and a lot of people are going to read the discussion in the next couple of days. The reddit science subreddit has seven million accounts and reddit is visited by nearly 200 mil people/month.

I could not have worked out better! Thumps up!

 

[eafw]

"We have work coming out soon that focuses on spinal fluid cytokines. Stay tuned."

This should be interesting, was hoping she'd say something more about microglia and inflammatory processes in the brain, perhaps this will give some pointers.

 

[Bob]

I've made a list of links to Mady's answers, just in case helpful for anyone:

Dr Mady Hornig:
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6g774
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6gm0e
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6gvbz
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6h8tg
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6hmj6
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6hsst
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6i241
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6ia1x
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6ih6c
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp6ite6

 

[Soundthealarm21]

@Valentijn

Actually that eminent psychiatrist wasn't voicing that as his opinion, but claiming it was the opinion of the others, and that he disagreed with it. That said, he's one of the nastier sort who claim to want to protect the patients while spinning psychological research to support his theories and ignoring the biological research. But it's still important to attribute quotes in an appropriate context - they give us enough legitimate outrageous quotes that we really don't need to take any of them out of context

Which psychiatrist are you referring to?

 

[Valentijn]

Which psychiatrist are you referring to?

If I recall correctly, it was Peter White who keeps getting quoted out of context on that one ("the undeserving sick" or some such). Definitely one of the big names in the UK BPS scene anyhow.

 

[Scarecrow]

@Soundthealarm21, @Valentijn

Must admit I had hoped that Sharpe, who called us " the undeserving sick of our society and our health service.” had retired.

He didn't say that we should be considered the undeserving sick, he was using that term to make another point. He is a dick, just not for that!

Esther, Sharpe said this of ME/ CFS patients in 1999:

“Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service

How have these doctors, who harm us so badly, got away for all these years with ignoring the fact that our illness is classified as neurological? It is monstrous.

Re the Sharpe quotation, here's the horse's mouth, so to speak. To be fair to Sharpe, the very blunt sentence has to be read in context. He did NOT suggest that PWCFS are 'the undeserving sick'.

The history of CFS has its roots clearly in the last
century. The issues surrounding it are shared with a
number of other poorly understood or 'medically
unexplained' illnesses.
Despite the age and size of this problem it seems that
we have made little progress in achieving an
understanding that permits effective treatment to be
offered to and accepted by those affected.
Those who cannot be fit into a scheme of objective
bodily illness yet refuse to be placed into and accept
the stigma of mental illness remain to paraphrase
Bernard Shaw the undeserving sick of our society and
our health-service.
However things are changing. Neuroscience is breaking
down the barrier between mind and brain. Doctor patient
relationships are changing to give more credence to the
patient's subjective experience. The collaborative
integrative approach of good CBT provides one model of
how we could proceed.
Perhaps we will do better in the next century. I hope
so.
http://www.meactionuk.org.uk/ME_-_What_do_we_Know_-_October_1999_-_310805.pdf

Of course his basic stance is nonsense but if you're going to accuse him, accuse him for the right thing.
p.s. The title of the lecture 'ME - What do we Know?' was pretty amusing. Not much, in his case.

 

[Valentijn]

I stand corrected ... Sharpe would've been my 2nd guess at least

 

[SB_1108]

Just got back from my doctors appt and saw that she answered my question - yay!
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp685i2
Was a little disappointed she didn't answer the most important part (#3)... wonder why? Ideas?

Overall, I was very pleased with the AMA participation! Couldn't have asked for better really!!
Now maybe we can get Dr. Lipkin to do one too!!!

 

[Snow Leopard]

Just got back from my doctors appt and saw that she answered my question - yay!
http://www.reddit.com/r/science/com...ma_series_im_professor_mady_hornig_at/cp685i2
Was a little disappointed she didn't answer the most important part (#3)... wonder why? Ideas?

It was a great question! I guess She just didn't really know how to answer that question.

 

[Soundthealarm21]

So I've had no less than 6 people reply to my comments or message me directly saying things like "oh my god this describes me" and asking for information.

Reddit reaches a lot of people so I'm very happy with how today has gone even though I feel AWFUL after only getting 4 hours of sleep last night. It's worth it for such a good cause!

 

[Sasha]

In retrospect, I suppose we should have mentioned Phoenix Rising.

I didn't think ahead to people who'd recognise their undiagnosed condition and want info.

Send 'em all here, @Soundthealarm21!

 

[Soundthealarm21]

In retrospect, I suppose we should have mentioned Phoenix Rising.

I didn't think ahead to people who'd recognise their undiagnosed condition and want info.

Send 'em all here, @Soundthealarm21!

I'm actually doing that right now. Editing my post.

 

[snowathlete]

So I logged on at 6pm UK, up voted, posted once or twice then had to leave before things got going.
So it got on the front page?

 

[Soundthealarm21]

So I logged on at 6pm UK, up voted, posted once or twice then had to leave before things got going.
So it got on the front page?

It was on the front of /r/all for about 30 minutes. It got quite a good response: 2,216 net karma. So a lot of people saw it.

 

[oceiv]

It was on the front of /r/all for about 30 minutes. It got quite a good response: 2,216 net karma. So a lot of people saw it.

This is important exposure to add to the streak of recent, positive media attention. Since a lot of journalists pick up stories from Reddit, it can only be a good thing that this thread had so many votes and a brief front-page stint.

I voted up the thread and sent someone with questions, but the questions didn't get answered. Still, overall a really positive result. I wish more ME/CFS doctors, clinicians, researchers and orgs would do social media chats. What makes me the happiest is that some undiagnosed patients may have found their answer. Well-done, @Soundthealarm21

Thanks to @Soundthealarm21 and @DanME and others for the Reddit how-tos and to @Sasha and @Bob for getting the word out and to @SB_1108 for both Reddit how-tos and getting the word out.

Working together, we can continue to get more exposure, take advantage of good media coverage and push for more funding. We need to focus on coordinated strategies. Now is the time.

 

[Soundthealarm21]

Yeah real team effort today. Really satisfied I was able to contribute something meaningful and if I'm lucky in the process I've helped people and so have all of you.