Proud Accessible Activism: The ME Debate Virtual Demonstration

Andy

Andy

Retired committee member
Throughout history, activism and campaigning have been a driving force for positive change across the world. From civil rights to LGBTQ rights and more. However much of this has been inaccessible to large swathes of the disability community.

For the ME community – the #MillionsMissing – the nature of this illness and the stigma attached to it have together silenced us for many years. However the internet has given us an accessible means to change this and, through #MEAction, we are harnessing the online power of virtual demonstrations to support the offline advocacy we do.

From our sofas and our beds, we are more connected than ever before. By utilising social media we are now able to speak out and reach a far greater audience. Even whilst the press might focus on other matters, we can effect change in the minds of the wider public. Moving the conversation on towards the need for biomedical research funding, the suspension of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) as treatments, updated medical training and halting the appalling use of unjustified child protection proceedings against families of children with ME.
Click to expand...
https://www.meaction.net/2019/02/01/proud-accessible-activism-the-me-debate-virtual-demonstration/
 
The from our sofas and beds part reminded me of that Churchill speech:

we shall fight on the beaches, we shall fight on the landing grounds, we shall fight in the fields and in the streets, we shall fight in the hills; we shall never surrender.

just replace various locales with beds, lounges, sofas, cots, comfy chairs . . .

and i'd probably add never ever let them forget that (most of) BPS research is not robust evidence of anything except maybe the mindset of it's authors.
 
"we shall fight from our beds, we shall fight from the landing ('cos we just climbed the stairs and need to rest briefly), we shall fight in the lounges and in the bedrooms, we shall fight from social media and forums; and we shall never stop pointing out correlation≠causation."
Something like that? :)
 
Andy said:
"we shall fight from our beds, we shall fight from the landing ('cos we just climbed the stairs and need to rest briefly), we shall fight in the lounges and in the bedrooms, we shall fight from social media and forums; and we shall never stop pointing out correlation≠causation."
Something like that? :)
Click to expand...

I want that tattooed somewhere - or maybe on a tea mug :p
 
Last edited:
I'm sorry, but I don't know if this is helpful - as much as I love many of the things ME action does.

At least here, a post like this will read as just underlining the points our LP/biopsychosocial brigade make about ME-patients online activisme. Even the word 'activisme' is used in a hostile manner here. The number of tweets/emails made etc is just the kind of argument that will be turned around against us. It want read as impressive, but organized harassment.

Where stigma once reigned we are now taking control of the narrative.
Click to expand...

Making it a battle over the narratives, is a strategy we have had to mostly leave behind - it is very risky. When the LP/biopsychosocial brigade takes up all the same tactics - as they do here, "Recovery Norge/Norway" - you can't argue against another patients story. But of course, other nations aren't in our situation.

This demonstration was proud, accessible activism. It was our community reclaiming its right to speak out for ourselves, to tell our true story, and it reached hundreds of thousands of people.
Click to expand...

Maybe it reads in other ways in other countries, but here, we've have had to learn to make it about documentation and the science. As people claiming to be healed by exercise, mindfullness, LP, diet, CBT etc also raised their voices, and claimed their right to speak for themselves. Which story is to take presedence then?


eta: spelling
 
Last edited:
Well maybe if doctors could diagnose M.E, there would be none of these nonsensical LP recoveries. It's not difficult to diagnose if a doctor can understood pem and crashes. But alas, doctors don't know or want to know in some instances? Some think fibromyalgia and M.E are the same thing. Until doctors can properly diagnose it will be a mish mash of patient reports. I also think M.E Action are doing great work and we need activism!
 
I love this thread. <3

Re: 'activism', some may shy away from the word or the impression it creates. I remember there were some countries who participated in #MillionsMissing who didn't want to call it a protest because that sounded aggressive to them, either as individuals or within the context of their area's mores and values.

It's also the strategies of our respective governmental organizations that have de facto formed our counterstrategies.

Americans will raise their sword and shield because CDC and NIH are going with an "everything's fine, we're totally listening, we're absolutely making progress" narrative. We need to shout that things are not going fine, loudly enough such that people outside the conversation hear us and take notice.

In the UK, the counter-narrative isn't that "things are fine, nothing to see here" but that patients are actively 'the enemy': loud, unreasonable, insane troglodytes unable to understand scientific progress except within a very narrow frame. It makes sense that advocates in the UK would need to be reasonable, contained, actively present yet never giving into temper -- and scientifically literate and articulate -- to counter this.

So: different countries and contexts produce different kinds of advocacy to support those in their area and fight their fights.

We so want to make a difference that we can lose sight of the fact that there is no one, most effective way to advocate for everyone, everywhere. Local context has direct influence on what will be the most effective brand of advocacy -- and in our current, international context of social media and forums like this one, something might be seen and communicated that is effective in one arena but ineffective or even may put a dint in the efforts of another.

Unfortunately, for precisely the same reason, we can't come up with one strategy that is equally effective for everywhere on the planet.

What we can do is to respond in supportive rather than co-optive ways when actively engaging with an issue that directly relates to places that aren't home to us. It's good to talk to activists or advocates who live in those areas before engaging and pressing one's own 'brand' of advocacy onto the issue.
 
inox said:
I'm sorry, but I don't know if this is helpful - as much as I love many of the things ME action does.

At least here, a post like this will read as just underlining the points our LP/biopsychosocial brigade make about ME-patients online activisme. Even the word 'activisme' is used in a hostile manner here. The number of tweets/emails made etc is just the kind of argument that will be turned around against us. It want read as impressive, but organized harassment.



Making it a battle over the narratives, is a strategy we have had to mostly leave behind - it is very risky. When the LP/biopsychosocial brigade takes up all the same tactics - as they do here, "Recovery Norge/Norway" - you can't argue against another patients story. But of course, other nations aren't in our situation.



Maybe it reads in other ways in other countries, but here, we've have had to learn to make it about documentation and the science. As people claiming to be healed by exercise, mindfullness, LP, diet, CBT etc also raised their voices, and claimed their right to speak for themselves. Which story is to take presedence then?


eta: spelling
Click to expand...

Agree completely, angry social media activism on any issue does my head in.
 
Sunshine3 said:
Well maybe if doctors could diagnose M.E, there would be none of these nonsensical LP recoveries. It's not difficult to diagnose if a doctor can understood pem and crashes. But alas, doctors don't know or want to know in some instances? Some think fibromyalgia and M.E are the same thing. Until doctors can properly diagnose it will be a mish mash of patient reports. I also think M.E Action are doing great work and we need activism!
Click to expand...

I'm not sure it's that easy. There have been severe LP-patients diagnosed by doctors I would call ME-experts here, that still have had LP-recovery stories in the press.

Many people are severe/very severe and recover some or even totally, by themselfs - withput any treatment. It's part of human nature, to think whatever treatment you tried last are what helped you. Also, even the best doctors can't be completely sure, I think we have to aknoweledge that.
 
inox said:
I'm not sure it's that easy. There have been severe LP-patients diagnosed by doctors I would call ME-experts here, that still have had LP-recovery stories in the press.

Many people are severe/very severe and recover some or even totally, by themselfs - withput any treatment. It's part of human nature, to think whatever treatment you tried last are what helped you. Also, even the best doctors can't be completely sure, I think we have to aknoweledge that.
Click to expand...
I don't agree, I think most that recover have post viral fatigue. They don't have M.E. as per ICC. Nancy Klimas has said in one of her presentations that once homeostasis is knocked out of kilter in M.E there is no way back. Same for Gulf War Illness. If it was that easy to recover, researchers would have unraveled the mystery by now. I have severe M.E, my body is broken... There is no way I'm going to recover without treatment, I am absolutely certain of that.
 
JaimeS said:
So: different countries and contexts produce different kinds of advocacy to support those in their area and fight their fights.

We so want to make a difference that we can lose sight of the fact that there is no one, most effective way to advocate for everyone, everywhere. Local context has direct influence on what will be the most effective brand of advocacy -- and in our current, international context of social media and forums like this one, something might be seen and communicated that is effective in one arena but ineffective or even may put a dint in the efforts of another.

Unfortunately, for precisely the same reason, we can't come up with one strategy that is equally effective for everywhere on the planet.

What we can do is to respond in supportive rather than co-optive ways when actively engaging with an issue that directly relates to places that aren't home to us. It's good to talk to activists or advocates who live in those areas before engaging and pressing one's own 'brand' of advocacy onto the issue.
Click to expand...


You expressed it more elequently then me :)

There can't be a 'one size fits all' for advocazy, the situation, needs and current clima is very different in US, Denmark, UK and Norway - the ones I know best. The needs and possible strategies in countries where the diagnosis is hardly known at all would have to differ greatly from the very heated situation we are in.

There is also another layer, here and I would guess the UK? Our proponents will generalise about any ME-activisme, wherever in the world it happens. The actions against Fink, as important as I understand it was in the US, have been used to berrate ME-patients advocay in Norway. It's complicated. The shoe-actions, on the other hand, have gone over very well here, combined with documentation on current situation locally :)

It's good to be mindfull about, that's the main thing, I think? :)
 
Sunshine3 said:
I don't agree, I think most that recover have post viral fatigue. They don't have M.E. as per ICC. Nancy Klimas has said in one of her presentations that once homeostasis is knocked out of kilter in M.E there is no way back. Same for Gulf War Illness. If it was that easy to recover, researchers would have unraveled the mystery by now. I have severe M.E, my body is broken... There is no way I'm going to recover without treatment, I am absolutely certain of that.
Click to expand...

But if you can't really seperate the cases clinically, even the best doctors can't be completely certain who has what. Even if misdiagnosis also is an issue. I've personally been on the very severe spectrum - but now more moderate/severe. It does happen, even if it is seldom.

Another thing about this stories, I've seen, latest today, stories about people claiming themselfs they where healed by LP - when the surrondings still saw them as very sick. There is something about the belife itself, that make people percieve themself as well, even if they are obviously not. I've had a discussion with someone that made strong statements about beeing healed by LP, and now all well again so I should try it to. Even if the same person still was so sick as to need disability benefits.

The point I'm making, there is something else going on with many of this recovery-stories, that might have nothing to do with mis-diagnosis.
 
inox said:
Another thing about this stories, I've seen, latest today, stories about people claiming themselfs they where healed by LP - when the surrondings still saw them as very sick. There is something about the belife itself, that make people percieve themself as well, even if they are obviously not. I've had a discussion with someone that made strong statements about beeing healed by LP, and now all well again so I should try it to. Even if the same person still was so sick as to need disability benefits.

The point I'm making, there is something else going on with many of this recovery-stories, that might have nothing to do with mis-diagnosis.
Click to expand...


It seems like some folks with ME want so desperately to be well, they buy deeply into a construct that heals them, and they are able / required to ignore their own reality. Belief is a very powerful psychological state. Cults depend on it.

But there can be a huge chasm between saying you are well, and actually being well. At some point in their near future, their physical reality will explode their belief.
 
JaimeS said:
What we can do is to respond in supportive rather than co-optive ways when actively engaging with an issue that directly relates to places that aren't home to us.
Click to expand...
Snowdrop said:
Hi @inox

How would you perceive the best way to move forward in Norway with changing people's attitudes toward poor quality thinking and research into psychological therapies and their use in physical illness?
Click to expand...

:hug::hug::hug::hug::hug::hug::hug::hug:

inox said:
stories about people claiming themselfs they where healed by LP - when the surrondings still saw them as very sick.
Click to expand...

One of the saddest things I've seen in ME beyond outright mistreatment was a person claiming GET and CBT had healed her -- but if you looked at her feed, every second week there was a post about how she'd "overdone it" and now had "a cold" or "the flu" or... fill in the blank here. Anything but calling a spade a spade. She was reframing what, from the outside, were obviously ME symptoms. She'd been taught not to call them that or think of them that way -- that was all.
 
You must log in or register to reply here.
Back
Top Bottom