@NelliePledge
Would love to see a YouTube video of some musical ME folk doing a cover version of brick in the wall.
I woke up strangley clear headed today and had a little energy. I then read the above quote and imagined how this video could work.
The video starts with a morning desert view, looking downward from a great height. The soundtrack starts as the camera moves downward toward shapes in the sand below. Above these shapes the letters "CFS/ME" have been etched in the sand.
As the camera slowly zooms in we can see that the shapes are sick people, some lying inert in the sand, others are crawling. Some have eyes and ears covered. A few are well enough to move slowly from patient to patient, delivering water and food. The ages range from children to the elderly.
A group of people in bright white medical coats approach from off camera as the view slowly moves downward to follow the white coat people from behind. They are pushing wheelbarrows full of bricks. They arrive at the group of sick people and look over the scene. The camera shows a patients' eye view looking upward at the smiling faces of the white coat people.
The camera pans across the sick people with the white coat people visible in the background, a slight halo can be seen behind the white coats. Some sick people reach out toward them for help.
[Halo metaphor: we expect help from medical professionals.]
The white coats move in and get to work.
The camera shows close ups of their hands placing bricks on the sand and
onto patients. Brick after brick is placed and the wall grows higher. Those patients who couldn't move before are now being pushed deep into the sand. Those who could previously move are now struggling beneath the weight of the bricks being piled onto them. Many are crying. Most look shocked.
The camera slowly zooms out as the white coats are seen working dilligently building separate sections of the wall. Occasionally sand is accidentally kicked in patients faces by the white coats. More of them come from off camera to help place bricks in the wall. The view from overhead gives the impression of sheep in a herd.
The camera shows heat haze rising in front of the wall, distorting the wall's appearance. The white coat people are too busy to notice but it's quite obvious to the patients.
The sick people are baking in the sun, sweating profusely while trapped beneath the wall. Faint, sometimes muffled cries for help can be heard.
It is now late afternoon and the wall is done. The white coat people move back to examine the results of their work. The camera zooms out to reveal that the wall has words embedded within it: 'PACE - exercise helps!'.
The camera shows the white coat people smiling. They are looking upward with pride and confidence at the great wall, while ignoring the patients trapped beneath.
The view pivots from the smiling faces, to show the wall, then moves downward to pan along the limbs and agonized faces of patients trapped beneath the bricks.
[Contrast between PACE claims and reality.]
A line of tired, sick people, including children slowly walks in from off camera. The white coats point to the wall, smile, and then hand piles of bricks to the sick people. The patients strugle to carry the bricks and eventually collapse.
Patients are now piling up in front of the original wall, making a new wall of bodies. The scene is starting to look like a war zone with all the bodies and rubble.
The sun has almost set and the scene grows dark.
[Metaphor: the dark night of despair for CFS patients]
A breeze stirs the sand.
[Metaphor: change is at hand!]
A few people in plain clothes (and some in white coats), carrying flashlights walk into view and look with horror at the patients. They then look at the wall, point their lights at a few bricks and tap them gently. Those bricks instantly turn to dust and blow away in the breeze.
[Metaphor: poor research]
The new people frown and look at the distant group of white coat people while motioning toward the patients and the gaps that are now visible in the wall.
[Lights: metaphor for truth, facts]
[Motioning to patients: indicating the thought of 'can't you see that many patients are getting sicker from this treatment?']
The white coat people shake their heads and smile while pointing upward at the wall. Their pointing arms are raised at the same angle, like robots, in unthinking solidarity to point at the wall.
[Metaphor: the research is true, ignore the patients' reality]
The new people become angry and start to yell while shining their lights, striking more bricks and turning them to dust.
Then more people come from outside the camera view. These people see how the wall has been built on sand and patients bodies. These people set up brighter lights and bash at the wall, brick by brick. Gaping holes are now visible.
[More light on the issue to get attention and additional scrutiny.]
Some of the white coat people start to look doubtful. Others remain confidant and start yelling at the people dismantling the wall. These confidant ones continue to yell, wave their arms, and then start
walking on the piles of patients in front of the wall. They continue to point at the wall while yelling and and stepping on patients.
[Metaphor: this is how many people with CFS/ME feel about how we've been treated.]
But more people are coming to shine their lights of truth on the wall and bash it to dust. Eventually some of the original white coats join the newcomers, while others slink away into the darkness.
The rescuers and newly enlightened white coats work through the night turning the wall to dust, pulling patients out of the rubble, putting them into beds and carrying them to safety; treating them kindly and genuinely helping them.
The tattered white coat leaders stand near the side on a pile of patients and continue to point doggedly at the rapidly dissolving wall.
Eventually there is nothing left of the formerly great and apprently sturdy wall. The small band of tattered white coats stand at the side,
clutching piles of sand.
A new day has dawned.
Meanings:
* State of patients - we know that CFS/ME patients are on a wide spectrum. The reasonably able bodied people who don't experience much PEM aren't included in this crowd which is meant to represent the people who have been and will be harmed by GET.
* Wall trapping patients - many people feel that this is what the PACE trial has done. Patients are told GET and CBT are the only effective treatments. It has also caused a wall to be formed in many doctor's minds where they think there is no reason to look further since 'exercise helps or cures CFS/ME'.
* Patients being pushed into the sand represents those who have gotten much worse due to GET, and the weight/influence of the PACE trial on all patients.
* White coats building the wall - those doctors and researchers who have promoted and defended the PACE results.
* More coming from off camera - showing how so many doctors have helped build up the wall without even looking critically at the original recommendations, trial protocol, etc. They just joined the herd of sheep bleating 'exercise is good for CFS/ME patients!'
* Sheep - 'sheeple' is a term for people who just follow and believe what others say. These are the doctors that rely on absracts and blindly trust that research results are accurate.
* Heat haze - can form shapes that look convincing but are really illusion. The patients here see through the haze of claims and know the truth, while the white coats rely on appearances and illusion.
* White coats happily looking at the completed wall - Many doctors just want to help their patients. The message here is that they have been misled, miseducated, and haven't been diligent in examining the recommendations that they follow.
* White coat people looking at the wall instead of patients - the doctors who ignore the patients harmed by GET and tell them to try harder because 'research shows that exercise helps'. These are the doctors that rely on summaries and recommendations instead of looking at the details. They rely on the illusion presented by PACE while ignoring the patients' claims of becoming worse due to exercise.
* "A few people in plain clothes (and some in white coats)" - not all doctors or researchers accepted PACE. There are doctors and researchers who think critically.
* End - hopefully the PACE results will fall soon enough. Whether patients will see any real justice for all the harm that has been done is uncertain.
Lyrics from Another Brick in the Wall Pt. 3 by Pink Floyd, annotated to see the lyrics in terms of PACE, GET, and the situation for people with CFS/ME:
I don't need no arms around me
[Trying to push me into GET or other potentially harmful treatments.]
And I dont need no drugs to calm me.
[It's not all in my head.]
I have seen the writing on the wall.
[Thanks to all those discrediting PACE and my own experience of PEM due to exercise.]
Don't think I need anything at all.
No! Don't think I'll need anything at all.
[At least not from the PACE or 'it's psychosomatic' crowds (except maybe an apology). We need real, valid research; treatments; and a cure.]
All in all it was all just bricks in the wall.
[The bricks of a blatantly poor trial and the expert promotional spin that followed.]
All in all you were all just bricks in the wall.
[A wall made of:
bricks of doctors with contempt for patients;
bricks of pitiful lack of funding;
bricks of poor research methodology and conclusions;
bricks of poor media coverage;
bricks that deny the biological truth of this illness;
bricks of doctors that dismiss our symptoms;
bricks of public misperception of our illness;
bricks of people who just don't understand.
This is the wall that we face. This is the wall that patients and our advocates are struggling to break down so that we can receive proper respect and treatment.
]
Ok, that was nothing to do with a placard so to give this post a hint of being on topic, here are some more placard suggestions:
Break down the wall of ignorance, stop support for GET
or
NHS guidelines help many CFS/ME patients GET worse