• 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.

"The results they really didn’t want you to see: key ME/CFS trial data released" (The Canary, Oct 2)

Messages
13,774
We are the main story on their homepage.

I don't know much about The Canary, but I do see them discussed a lot on-line as an influential lefty news source. I think that they're now bigger than a lot of widely known magazines like The Spectator and stuff.
 
Messages
13,774
My partner just pointed out that it's really amazing to have such a good piece promoted in a way that means it's likely to have a really wide reach, and I don't seem to realise it.

This PACE stuff has been getting bigger and bigger in a way that means I can take it for granted, but this piece is really on our side, really well referenced, and has a great chance to attract yet more attention. I think that knowing all the details means that we can forget what a crazy and dramatic story this is, if we can just get people to start looking at the evidence instead of trusting authority figures.

My dad e-mailed me because he was excited about it being in The Canary... must be good news!
 

A.B.

Senior Member
Messages
3,780
The PACE story sounds like some crackpot conspiracy, but it's true!

A David vs Goliath scenario.
Researchers that manipulate the study protocol.
A smear campaign to silence critics.
The science media center was an accomplice.
A prestigious journal overlooks all the problems with the study.
Sinister conflicts of interest in the background.
A legal battle with false accusations and dirty tricks.
The truth comes out... and widely held beliefs about treatment effectiveness turn out to be false.
 
Last edited:

worldbackwards

Senior Member
Messages
2,051
The PACE story sounds like some crackpot conspiracy, but it's true!
It's kind of why I wish this piece was somewhere other than The Canary. They'll believe this stuff anyway, it pushes all their buttons - conspiracy; government corruption; dodgy corporate interests. It's almost wasted on them.
 

worldbackwards

Senior Member
Messages
2,051
Maybe they're on to something?

Who knows how many times we've wrongly dismissed other people's concerns for being too conspiratorial sounding?
Yes, but it isn't the point. The point is that it doesn't make our message any more credible than it is already.
 

Skippa

Anti-BS
Messages
841
The PACE story sounds like some crackpot conspiracy, but it's true!

A David vs Goliath scenario.
Researchers that manipulate the study protocol.
A smear campaign to silence critics.
The science media center was an accomplice.
A prestigious journal overlooks all the problems with the study.
Sinister conflicts of interest in the background.
A legal battle with false accusations and dirty tricks.
The truth comes out... and widely held beliefs about treatment effectiveness turn out to be false.

I can't wait 'til the movie comes out!
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Sue Marsh writes for the guardian or something?
Some probably know a lot more about her than I do, but I see that she has 11K Twitter followers and a blog at https://diaryofabenefitscrounger.blogspot.com. She describes herself : "Occupation: Sick Person! I have a rare form of Crohn's Disease. I was diagnosed 21 years ago.[....]I have children that I often can't look after and a husband who often looks after me. Our lives are disrupted daily by the misery of a chronic condition."
 
Messages
2,125
Some probably know a lot more about her than I do, but I see that she has 11K Twitter followers and a blog at https://diaryofabenefitscrounger.blogspot.com. She describes herself : "Occupation: Sick Person! I have a rare form of Crohn's Disease. I was diagnosed 21 years ago.[....]I have children that I often can't look after and a husband who often looks after me. Our lives are disrupted daily by the misery of a chronic condition."
Yes but she now works for Maximus (DWP WCA) and is on 75K a year.