V.R.T.
Senior Member (Voting Rights)
Maybe it should be something like
help us find them
and help us campaign for support for people with ME/CFS in the meantime?
So it's like an action we're doing. The wording isn't quite right but still.
There aren’t any answers, we are looking for them and will support you until we find them
- Thread starter hotblack
- Start date
help us find them
and help us campaign for support for people with ME/CFS in the meantime?
So it's like an action we're doing. The wording isn't quite right but still.
Utsikt
Senior Member (Voting Rights)
So the suggestions so far are (the first three lines seem to be approved of):
ME/CFS devastates the lives of millions.
It has no treatments.
Help us look for them.
Patients need support until then. /
We need support until then. /
People with ME/CFS need support until then.
Thinking more about it, I’m now prefer «we». Because it includes supporting pwME/CFS, and supporting the people that stand with them and are trying to help. Including carers, family, doctors, researchers, advocates and so on.
Jonathan Edwards
Senior Member (Voting Rights)
My mind threw up the phrase 'which in this case they have not got' but I became fascinated by my inability to track down its source. I remember now. It was 'Which in your case you have not got' and is part of a war poem about teaching recruits how to fire a rifle. Can anyone remember who by? Maybe Sassoon?
Edit: Naming of Parts by Henry Reed. A memorable poem.
Edit: Naming of Parts by Henry Reed. A memorable poem.
NelliePledge
Senior Member (Voting Rights)
support can include help with daily living basics which I don’t think medical care covers
V.R.T.
Senior Member (Voting Rights)
I don't remember this from when I studied the WWI poets in sixth form. Just looked it up, its very affecting.
"Us" in line three is referring to everyone trying to find an answer. "Support" is ambiguous if the second part isn't just about pwME. The support a researcher, or even a caregiver, needs is very unlike the support a bedbound patient needs, so I think the sentence would be too confusing with "we".
I think it should be focused on the pwME type of support. The preceding sentence already asks for the researcher-type support.
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Maybe as a shareable meme, even just the first three sentences work:
ME/CFS devastates the lives of millions.
It has no treatments.
Help us find them.
Devastation with no treatments sort of implies that support is needed.I think it could slightly be improved further because "them" is a bit ambiguous. Context clues make it obvious it's referring to treatments, but when quickly reading, it kind of also sounds like it's about finding the "millions".
Maybe:
ME/CFS devastates the lives of millions.
It has no treatments.
Help us find an answer.
V.R.T.
Senior Member (Voting Rights)
I was just thinking this. I think it is much more powerful this way. A succinct mission statement.
I agree that support is important (God knows I need it!) But from a messaging point of view I think it's better and more focused this way.
Sasha
Senior Member (Voting Rights)
I agree, which is why I mentioned medical care (particularly with the whole refusal of tube-feeding as the extreme case).
It can but it's too broad. People could easily interpret it as needing psychological support, or just moral support.
Good point. Comes across a bit as just a call for donations, which people might instinctually ignore, as opposed to an informational message.
Good work.
1.
I prefer 'we' to 'patients'. If it is being published under the banner of a patient group then it is pretty clear who 'we' is, and implicitly includes carers.
Also the 'us' in the previous line establishes who we are talking about, and 'we' follows on more naturally to my ear.
It also makes for a cleaner simpler line.
2.
Generally not sure about the last line. The idea is right and important, and it is in the right place, but the form and clarity could be improved.
Don't have any specific suggestions on that yet.
3.
While noting the importance of brevity and clarity, I wonder if it is worth adding something about how it can affect anybody. 'This can happen to you too' sort of sentiment. Self-interest being a very powerful motivator. e.g.
thank you.
I think if it is actually going to be used then we do need to define these a bit.
Because whilst noone will ever disagree with the idea of short is great as some general
It does actually need to be specific in a lot of these scenarios that seem to be potentially underneath what this is intended for.
For example all of this could apply to any illness - as almost all will be described as debilitating or something similar. And we've an illness where just mentioning the name means 90% of readers have a very cemented and sure picture of someone either with fatigue or 'thinking they are tired'. Without anything to point to that then the points are 'building on that'. And even patients, particularly newer ones who've been to clinics or found social media x, y, z come in different flavours as to what they are looking for (and it is fine if we aren't all things for all/define what we 'don't do' at least implicitly given the issue of some of these things causing harm I think we need to pretend that ducking that awkward issue helps anyone).
What are we trying to get across - ie do we have an end/aim to this (to start people getting the penny-drop there has almost been a real research ban for decades ie 'it is unlike they assume based on what they hear goes on for the illnesses they hear about' whilst we all were played games with as/so our lives toileted beyond saving whilst waiting for something they knew they were unpicking)
Or are we writing a charity's mission statement in the hope that one will appear that wants to fulfill that (and not just use it as a strapline)?
And the issue of patients as a term (when we don't get any care and are not 'taken on and looked after' in fact the opposite to the way such a term implies etc) is a topic I'm really glad has come up.
And yet things like that become fraught with things we have to debate to get the wording gamed out because of the very dystopian way we have been played on ideas like 'care' or 'patient' by pretending to the rest that we are being 'cared for' when really we've been 'dealt with' by being silenced and harmed. But the heartbreaking fact that 5yrs on we looked those humans in the eye, who can all read so knew the game was up, and many round them and us acknowledged it, and they just decided to wait it out until people were bored enough they let them return to the same abuse and tactics and even more harmful the pretending and gaslighting telling everyone we 'get care' as if being haunted by a system that is genuinely trying to undermine us at every stage from accessing survival is allowed to be called that still.
I've come up with straplines before that meant things and they just got nicked by people who fancied misusing them for what they wanted to do and hide underneath it and pretend somehow the specific meaning of what I'd put across could be stretched to cover what they weren't doing or intending on. It's useful to have something specific enough it keeps people on-track (mission creep often comes in to the best of situations) by them having to keep checking back to see if they are fitting/meeting those stated intention or claims.
So I'm confused what we are doing without knowing who and what aims we need to be thinking of under this.
But in support btw
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I'd avoid anything that could be construed as the blame game, and that might get doctors offside.
Keep it neutral.
And I think we have an iceberg of patients who because of the whole situation we are landed in to different extents find it so unattractive to get involved with they don't seek, admit or tell anyone their diagnosis/branding. And of those who do quietly a large amount don't know what they are talking to 'just don't want to get involved with the politics'.
But I don't think this group means if it was a fresh, clean thing more like other serious illnesses and a bit more like DecodeME managed to do - where it stuck to 'this is bad news as an illness, and we just need to start working towards a cure or other biomedical help'.
ie they are as clear in being sick and haunted by how overwhelmed by parasitic opportunists 'wanting to help' instead of getting the basic help anyone would assume would be the bare minimum out there when it's a moment that will if missed caused a scar on your life and future, key time after key time after key time. And just need a break from the stigma and having somehow ended up in this useless pit noone imagines they will be the type to get buried into but just can't have the name of the illness even attached to them to survive in their world that touches people outside the illness (many of whom term trying to sort any one of the million issues we are trapped in as 'being whingers' - hence why I keep saying the empty 'raise awareness' without a plan is not helpful, particularly when there are a million 'wellness types' throwing fatigue at them too they don't know aren't us ie that isn't ME/CFS yet, if we want to rebrand who we are seen as we have to have a joined up plan)
or something like that.
So it not only needs to seem simple and short (but I think the terms are direct and to the point) but be really non-general and somehow bridge more precisely some of the 'but we don't mean that kind of help' iterative issues that make everyone stop short of 'getting involved' even to the extent of filling in a decodeme survey. So people know it is something new and genuinely being done by someone who has gamed it through so that it can't make either the situation or the reputation worse by getting hijacked. Or being a phrase 'anyone can read what they want from'.
But I don't think this group means if it was a fresh, clean thing more like other serious illnesses and a bit more like DecodeME managed to do - where it stuck to 'this is bad news as an illness, and we just need to start working towards a cure or other biomedical help'.
ie they are as clear in being sick and haunted by how overwhelmed by parasitic opportunists 'wanting to help' instead of getting the basic help anyone would assume would be the bare minimum out there when it's a moment that will if missed caused a scar on your life and future, key time after key time after key time. And just need a break from the stigma and having somehow ended up in this useless pit noone imagines they will be the type to get buried into but just can't have the name of the illness even attached to them to survive in their world that touches people outside the illness (many of whom term trying to sort any one of the million issues we are trapped in as 'being whingers' - hence why I keep saying the empty 'raise awareness' without a plan is not helpful, particularly when there are a million 'wellness types' throwing fatigue at them too they don't know aren't us ie that isn't ME/CFS yet, if we want to rebrand who we are seen as we have to have a joined up plan)
or something like that.
So it not only needs to seem simple and short (but I think the terms are direct and to the point) but be really non-general and somehow bridge more precisely some of the 'but we don't mean that kind of help' iterative issues that make everyone stop short of 'getting involved' even to the extent of filling in a decodeme survey. So people know it is something new and genuinely being done by someone who has gamed it through so that it can't make either the situation or the reputation worse by getting hijacked. Or being a phrase 'anyone can read what they want from'.
And by cynical of the general, I feel with the last few years of what's just happened the severe and more experienced got told by their 'own' to butt out, or cut out, and leave the others to it 'as we know about severe etc, know people will twist things yeah yeah' and they didn't want to hear what they thought was our slow communicating but was telling them its more complex and nuanced than that. Then shafted. and the window of opportunity we tried to slowly build a slow plan to make the most of got turned into the same old by those inside as much as outside.
I can't be the only one and they'd want to hear specifics and nuance so it isn't another misguided person (I'm not talking about s4me in this, and this point is in the general because I know you aren't and we aren't but... we must bear the crosses that there are others who it turns out without that clarity haven't held to such things by the end ) asking to be supported in something they are being ambiguous about.
We can easily manage to nail more complex stuff into shorter 'strapline' type directness once we have agreed on the exact nuance it needs to capture (which needs longer form to discuss often)
I just think I've reached that point where things seem to have gone so bad in recent years, but only coming out now, that anyone claiming to be an advocate or part of a charity should be these days expecting to be asked (and kept being checked up on honouring) now some pretty pertinent things to actually almost swear to about their beliefs and intentions, and the most recent Canary article has made me think I'm not the only one - people will now have to be prepared to confirm who they are, really, in these types of terms/questions - and I think we can? (and there are ways around it being rude by eg saying 'within this the priorities in a way forward are/are not' or something):
- what do you genuinely believe of those who are more severe and do you believe in an approach that really believes that so approaches any 'help' claiming to do as seeing the illness as a spectrum and helping those more mild is 'because I understand what happens when they deteriorate' and we will deteriorate because the systems around us have been designed to cause that unless we reach a very high level of cushioning to avoid needing all of them.
- do you think CBT or any similar talking therapy or mental health claiming approach (or mindfulness, gong chiming or ear buds) is irrelevant in the discussion of ME/CFS noting responses about it being a side-issue or added-extra mean that it shouldn't be on the main topic agenda particularly because of the harm that term being used ambiguously has caused (ironically in harming people's lives and being of the type that attacks mental health by deliberately being used to implement a dystopia)
and I am also starting to have little alternative conclusion than they just have the Neil Riley type beliefs of the illness being a fatigue condition and that those in worse positions aren't less fortunate due to support network but just need the nightmare scenario of being treated as if they are mad, actively, for failing to have that set-up with CBT of 'how can you keep chasing getting it for yourself and wear yourself down when we know noone wants to help'.
and then there is the issue that those who might get the illness, don't make the next stage required which is to acknowledge and publicly confirm that we have been forced to live in that dystopia and most services or people we come across 'haven't changed' but worse claim they do in order to mislead in looking for a mandate to carry on regardless. If people don't confirm that - lying to themselves it is because they are being nice by not calling out and stopping the harmer with a gentle 'the game's up I see you' politely and letting them carry on harming as they've been misled as to what good kind people do is to call the truth the truth and not side that way because it makes their life easier.
the final question is them acknowledging that unless they are very specific about the ask and checking with pwme who have the 'institutional history' they aren't lessening the chances of the outcome of what they do causing more harm than good because of this habit of things being twisted to be used as another excuse to impose something harmful onto vulnerable pwme.
I don't know how this translates but it feels fruitful in focusing my thoughts for example with the research side of things we have the needing to make sure it is a group of sensible people with enough of a plan and nous as to the size of job but how it might be most efficiently tackled that we get somewhere. so we don't just create funds that get hoovered by usual suspects doing unhelpful research. but we can't stymie and strait jacket things so much noone could
because even when we think, for hope, that that is the one good way out for us one day, well we've had so many lessons we 'got schooled in' even for that
I don't disagree with the underlying point needing to be made: 'this is the situation' - that laypersons might assume 'go see your HCP if things aren't working and they might be able to try x, y, z'
and even those with not ideal situations (which a lot of illnesses are in) mightn't realise, and in fact I struggle to articulate because it seems deliberately convoluted what we've been trapped in so we can't explain the darvo/reversal of it all, that it isn't just that the services are rubbish or waiting lists long and treatment old-fashioned and all the other bad things that are more common but that 'doing the wrong thing' pervades (I don't know how to word that without downer words like misinformation or ideology, just that it's fundamental - a system planned on a different illness, not just 'passive neglect'/postcode lottery etc) .
I agree that the end phrase being forward-looking and specific (avoiding blame game or reasons for people to use oppobrium as excuse) is the ideal, whilst that term neglect happens to be one of the words that encapsulates the brick wall covering a trapdoor in the floor we face at all angles. I'd say of course we can agree meaning/gist first, then work it round to angle in the end, but it sounds pat as I'm not saying that's easy as a task to get done either.
Maybe Sean O'Neill's wording (albeit applying to a slightly different context) where he said some phrase about it isn't 'falling thru the cracks, the whole system is a big crack' but managed to get it sounding better than I've put might be one to look at on this point ?
I am not disagreeing with the underlying point Kitty is making, it is correct and important. The medical profession have indeed thoroughly botched this. That is beyond dispute, far as I am concerned.
But better for this exercise to initially simply state the fact (that there are no treatments), and let the reader themselves ask the obvious question arising from that fact: why there are no treatments?
Then we can start giving more specific answers.
As I see it, this particular piece of advocacy is to give the reader the very core of the story, and get them interested finding out more, not to tell the full story in one go.
But better for this exercise to initially simply state the fact (that there are no treatments), and let the reader themselves ask the obvious question arising from that fact: why there are no treatments?
Then we can start giving more specific answers.
As I see it, this particular piece of advocacy is to give the reader the very core of the story, and get them interested finding out more, not to tell the full story in one go.