Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Any suggestions for a placard for #MillionsMissing in London 12 May

Discussion in 'Upcoming ME/CFS Events' started by MEMum, Apr 28, 2017.

  1. PatJ

    PatJ Forum Support Assistant

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    This one is simple and has a double meaning:
    Lack of research funding is hurting ME
     
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  2. Sean

    Sean Senior Member

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    I think one one looks pretty good:
    Clear, simple, one of the core facts about both the disease and PACE, makes it personal and active for the reader, and provokes them to ask 'what do you mean?'.

    (Though it should be 'worst'.)
     
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  3. slysaint

    slysaint Senior Member

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    I don't think going for the sympathy vote has ever worked for pwME (maybe Unrest might change that eventually).
    And asking for more biomedical research is what every other 'disease' group want also.
    Until the whole scandal of the 'ME story' is exposed I think any demands will be ignored/disregarded.
    Which is why (sorry to keep banging on about this) I think that a #PACEtrial message (although it might not be immediately understood) might provoke a more 'curious' attitude, and the more people that find out about it the better IMHO.

    #PACEtrial- millions wasted - lives and money

    eta: but why stick to one?.........use all the #PACEtrial ones..........each one explains a different element..........
     
    Last edited: Apr 29, 2017
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  4. hellytheelephant

    hellytheelephant Senior Member

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    I love this!
     
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  5. PatJ

    PatJ Forum Support Assistant

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    I see how 'worse' sounds odd as I used it. I was thinking in terms of health that has become worse since beginning the trial, not the worst it could ever become. Maybe 'worsened' works better.

    How about:
    #PACEtrial: where your worsened health is our 'recovered.'

    #PACEtrial: GET worse and we'll call you 'recovered'.

    or use the pair of worse and better for:
    #PACEtrial: GET worse and we'll call you better.

    Then there's the important link between exercise and what happens to many people with CFS/ME:
    #PACEtrial: GET exercise and GET worse!
     
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  6. PatJ

    PatJ Forum Support Assistant

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    #PACEtrial: Taxpayers give $8 million, patients GET sicker.
     
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  7. hellytheelephant

    hellytheelephant Senior Member

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    I don't know if the placards are aimed at the general public or medical professionals(?)


    ..but I honestly don't think the average person has heard about the PACE trial- even those have chronic illnesses or know someone with it. We are very fixated on it, because it impacts our lives so hugely.l
     
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  8. slysaint

    slysaint Senior Member

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    The ideal would be that the message be picked up by the media.................if it appears often enough SOMEONE should at least ask what it's all about/google it.

    eta: another couple #PACEtrial- we want science not pseudoscience,
    #PACEtrial - Retract it NOW
     
    Last edited: Apr 29, 2017
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  9. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Here's a good one to put on a banner on a protest, yet won't be show on TV as the media are all cowards:

    If ME patients need CBT/GET to reduce belief in infection why are UK sufferers banned from donating blood/umbilical cord when alive and body tissue after they die? Is fear of exercise a transmittable infections disease?

    If not, biopsychosocial therapies such as CBT/GET are a lie, and clearly harming patients told they are mentally ill, but known to be a donor risk.


    Who is responsible for this NICE situation that on closer inspection is terribly BAD?
     
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  10. SamanthaJ

    SamanthaJ Senior Member

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    "NICE guidelines based on Fake Science"?

    Making the slogans meaningful, eye-catching and comprehensible to the lay person all at the same time is so difficult! Some great suggestions here, though.
     
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  11. hellytheelephant

    hellytheelephant Senior Member

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    Listen to ME!
    Fund ME!
    Help ME!
    Cure ME!
     
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  12. Barry53

    Barry53 Senior Member

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    You're a spring chicken! ;)

    Very appropriate lyrics.
     
    Last edited: Apr 29, 2017
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  13. antherder

    antherder Senior Member

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    Debunk
    PACE junk
     
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  14. NelliePledge

    NelliePledge plodder

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    Would love to see a YouTube video of some musical ME folk doing a cover version of brick in the wall. With some cool graphics. Maybe couldn't mention EC by name individually but the dodgy CBT and GET for teenagers could be mentioned by name. Would be good if adults harmed by GET could be shown campaigning to prevent the same happening to kids. Unfortunately I don't have any of the required skills to make it happen.
     
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  15. NelliePledge

    NelliePledge plodder

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    ME is bIological not psychological
     
  16. Binkie4

    Binkie4 Senior Member

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    How about emphasising the forthcoming general election? In the slogans.

    A lot of people with ME are housebound. Do they/how do they vote? I am lucky to live with a husband who will drive me there/ wheel me in so I can put my cross on the paper. And I will do that however I feel, dizzy head, slumping over etc. Just hope I don't vote for the wrong candidate.

    I know there are postal votes but that takes organising, and for people with no energy, maybe not possible. If peeps rely on getting to the polls and have a bad day, their vote is lost. ME peeps may be deprived of participating in the democratic process. A grand way of putting it but true.

    If I had the energy, I would go to see both candidates and ask for their views emphasising the specific nature of ME e.g. Energy loss. Our sitting MP has been approached by us several times but the alternative, who may well get in, ...I have no idea if he knows about ME.

    I've strayed from the slogans and I can't currently think of any. Maybe

    VOTES for ME, and a few subheadings.

    Housebound
    Heavy fatigue
    Fluctuating symptoms
     
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  17. SamanthaJ

    SamanthaJ Senior Member

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    "Voters in marginal constituencies demand ME research"

    "250,000 votes to the party that cures ME"

    Bit of a mouthful, but might touch our politicians' hearts...
     
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  18. hellytheelephant

    hellytheelephant Senior Member

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    That is brilliant @NelliePledge ! says it all.
     
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  19. NelliePledge

    NelliePledge plodder

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    cheers Hellythe ellie
     
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  20. PatJ

    PatJ Forum Support Assistant

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    @NelliePledge

    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
     
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