• 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.

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

DanME

Senior Member
Messages
289
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

Senior Member
Messages
936
Location
UK
"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.
 

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
@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 :p

Which psychiatrist are you referring to?
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
@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.
 

SB_1108

Senior Member
Messages
315

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
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!
 

oceiv

Senior Member
Messages
259
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.
 
Last edited: