• 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.

Any suggestions for a placard for #MillionsMissing in London 12 May

Messages
2,391
Location
UK
How about something along the lines of:-
WHY? ...

WHY no reporting of the current biological research into ME?

WHY no reporting of how under-funded biological research into ME is?

WHY no reporting of how NICE guidelines are based on a badly flawed clinical trial?

WHY no reporting of the great many eminent scientists signing to say same clinical trial was terrible science?

WHY no in-depth investigative reporting of what is wrong with ME treatment in the UK?

WHY only reporting of psychiatry scientists who insist the flawed clinical trial was "a thing of beauty"?

WHY?
And then try hard to get it clearly in shot of news cameras, and make it hard for them not to show it.
 
Last edited:

dangermouse

Senior Member
Messages
430
How about something along the lines of:-

And then try hard to get it clearly in shot of news cameras, and make it hard for them not to show it.

I think the "WHY........" statements state exactly what we all want to know and it'd maybe prompt some to look into it too.
 
Messages
2,391
Location
UK
I think the "WHY........" statements state exactly what we all want to know and it'd maybe prompt some to look into it too.
A really good goal would be for it to appear clearly in a BBC news broadcast.

My thought is to not alienate/confuse the innocently uninformed, who are the very people who need to become informed.
 

antherder

Senior Member
Messages
456
@MEMum, This started off as a two line placard slogan, but has kinda morphed...erm...into a rap song... Any musos in da house/on da board wanna turn this into a youtube video? (Joke:))

Title: Sound The Alarm - First Do No Harm!

The world needs to see
The neglect of ME

It's time now to face
The scandal of PACE

The charges they follow;
The study is hollow

Statistically flawed
Errors ignored

The method is weak
With more than one "tweak"

GET doesn't cure -
Just funding insure

Making us move
Won't symptoms improve

It just makes us worse
Puts us into reverse

CBT cannot treat
It's a type of deceit

Thinking you're well
Is useless as hell

When your body is ill
-it's not about will

We just do not choose
Our whole lives to lose

The "Malingerer" Myth
Is a theory that's FITH*

It's patient abuse
No room for excuse

The Trial on trial
The verdict: DENIAL

Guilty - all counts
It's time to renounce

ME is a prison
With bars of derision

Told that we're lazy
Deluded and crazy

But our bodies are broken
Suffering unspoken

A life sentence for us
With a label of MUS

Unable to trust
In a system unjust

Years of neglect
No care, no respect

No compassion or reason
It's medical treason*

No crime we've committed
It's time we're acquitted

We're not guilty of lying
PACE is illness denying

Too many have died
Because "science" has lied

Sound the alarm!
First do no harm!

Enough of inaction
We demand a retraction

The (PACE) boil needs Lancing
The truth is advancing

Real studies are proving
Why our bodies aren't moving

PACE is not science
We march (rap) in defiance

Cos the world needs to see
The neglect of ME


It's a work in progress, needs a bit of...tweaking... Not sure about the order, or the title (likely been done before), but I figure if I don't post it now, I'll forget I wrote it...(The probability of that is quite high. Statistically robust, one might say.)

Maybe some of the two liners might be placard worthy, with bullet points added underneath, highlighting some stats like the amount of money wasted etc, as other posters have mentioned.

*(FITH = F****d In The Head.)

*The phrase, "It's medical treason," refers to medicine in a broad sense, not any particular individual(s), because the way PWME are treated by the medical profession in general is a betrayal, in my opinion, of The Hippocratic Oath. So there.:)
 
Messages
66
Just a few ideas:
  • Don't Misrepresent ME
  • CBT/GET Misrepresent ME
  • I'm here because #Millions Missing can't be
  • We need Bio Research not Psychotherapy
  • Help us to help #Millions Missing due to ME
  • #Millions Missing due to ignorance of ME
  • We need you to help #Millions Missing
  • If you don't understand, please ask about ME
  • I'm here to raise awareness of ME
 

MEMum

Senior Member
Messages
440
@MEMum, This started off as a two line placard slogan, but has kinda morphed...erm...into a rap song... Any musos in da house/on da board wanna turn this into a youtube video? (Joke:))

Title: Sound The Alarm - First Do No Harm!






This is so clever. You really have a talent with words.
@LA Cooper how can we best use this?
 
Messages
2,125
Just occurred to me the the #MM protest are smack bang in the middle of the Eurovision song contest (9th, 11th, final is on the 13th). Not sure how, but anyway to hijack coverage? I'm thinking more twitter/facebook?

Obviously too late to enter though:D
 
Messages
2,125
Or you could dress up as Florence Nightingale (you could still wear the wig if you wanted altho it could send mixed messages:D).

Given all the coverage the Mental Health Awareness week (also this week) is getting, maybe placards with:

ME is NOT a mental illness

It might cause the usual controversy but at least provoke discussion.
 
Messages
2,391
Location
UK
Or you could dress up as Florence Nightingale (you could still wear the wig if you wanted altho it could send mixed messages:D).

Given all the coverage the Mental Health Awareness week (also this week) is getting, maybe placards with:

ME is NOT a mental illness

It might cause the usual controversy but at least provoke discussion.
Maybe to avoid it being confused as mental health prejudice, tweak it slightly ...

ME is NOT a mental illness - so why do psychiatrists think they can cure it!