There aren’t any answers, we are looking for them and will support you until we find them

[Ravn]

Generally, shorter is better, more effective. If you try to make too many points, anyone just skimming won’t take them in anyway

It doesn’t need to be a single message

You can have a part that repeats in each message, to create a recognition effect, here maybe the first one or two lines

That’s then followed by a different line or two, either to target a specific audience, or just to create variety

 

[hotblack]

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.

There’s something about the phrasing of this feels as if it shifts things. It feels to me closer to more generic charity stuff. Just my opinion.

It can but it's too broad. People could easily interpret it as needing psychological support, or just moral support.

I’m also wary of us going in circles thinking about how things may be interpreted.

Stick to a message thot feels right and you can deal with subsequent details later. My aim was to keep it simple and broad. Maybe allowing different interpretation isn’t a bad thing if trying to draw lots of people in. Some of the most unifying messages and even legal agreements and treaties rely on ambiguity!

How about tweaking the original suggestion to something we could use rather than others if that’s the aim?

There aren’t any answers
Help us look for them
Support people with ME/CFS until they’re found

Or perhaps
We don’t yet have the answers
Help us find them
Support people with ME/CFS

 

[hotblack]

Generally, shorter is better, more effective. If you try to make too many points, anyone just skimming won’t take them in anyway

Strong agree.

It doesn’t need to be a single message

Good idea. A couple of variations on a theme could be useful here.

 

[Sasha]

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.

I think this could be death by a thousand cuts, where we just pile on one more thing, and one more thing. It already feels baggy to me to add that on (sorry!).

There are so many things that we could say about how awful and important it is and about why people should care, but the more we say, the more the message loses its power. I don't think that people do believe that it could happen to them, any more than they think that MS could happen to them, or Parkinson's, and I don't think they're going to be persuaded by a brief phrase that ME/CFS could happen to them.

 

[Sasha]

Should it be 'there are no treatments'? It fits better with 'help us look for them'

I'd say not, because 'them' clearly relates to the most recent plural noun, which is 'treatments'. I'd stick with 'it has'.

 

[Peter T]

To be contrary, to me the suggestion of the title “There aren’t any answers, we are looking for them and we will support you until we find them” still sounds the most impactful, though I recognise the ‘we’ would be a distraction without some long rigmarole to give context. I guess we this formulation we are saying this is what we want services to be saying and to cast off their psycho or bio babble while we seek evidence based answers.

Off the subsequent re formulations, the following feels the most immediate

There aren’t any answers
Help us look for them
Support people with ME/CFS until they’re found

However as others have said, is this putting the cart before the horse until there is a campaign to go with the slogan.

 

[richie]

If it’s supposed to be a communications strategy, it it might have to be phrased differently:

ME/CFS has no treatments.​

Help us look for them.​

We need support until we find them.​

​

I’ve chosen to focus on treatments because that’s the end goal, and knowledge about the disease mechanisms alone won’t help our suffering.

1) We assert your points es[ point 1)
2) Sb says "diagnosed by symptoms, I had those symptoms, I did LP etc, I no longer have the symptoms. I no longer have (or do) ME. Sb who has had full remission/cure after a biophysical approach might say similar.
3) We say "You would have got better anyway"
4) They say "How do you know"?
5) We say "you never had ME"
6) They say "I had the symptoms and diagnosis is by symptoms"
7) We say but even so it can't have been ME because ME has no treatments
8) They say "circular argument"

We have to be subtle and careful. Garner might have your first point for breakfast as I outline. and he would probably throw in an accusation of "negative thinking".
I am still convinced that "splitters" have the edge over "lumpers" in dealing with the realities. There are some/many/most/ an overwhelming majority for whom no effective treatment has been found, there are some who are/claim to have been helped by a variety of treatments whether from the likes of Teitelbaum's cookbook, or indeed LP . MT. RT ect , there are straightforward misdiagnoses (eg. missed Lyme) and there are conditionsn whch may have substantial overlap but with key differences which may also be diagnosed wrongly as straightforward ME. Splitters are also on abetter position to counter the BPS/LP etc lumpers "Ok you have your group but why esp. when symptoms are non specific should that apply to al"

I accept there is a vast lump to which what you say applies, but it does not coincide with the set of ME sufferers diagnosed as things stand by symptoms.

 

[Utsikt]

Maybe:
ME/CFS devastates the lives of millions.It has no treatments.Help us find an answer.

ME/CFS devastates the lives of millions.​

It has no treatments.​

Help us find an answer.​

Help us until then.​

If we want to make it a plea for help, repeating «help us» at the end might be one way to do it.

If we want it even shorter, this might be something:

ME/CFS devastates lives.​

It has no treatments.​

Help us find an answer.​

Help us until then.​

 

[V.R.T.]

ME/CFS devastates the lives of millions.​

It has no treatments.​

Help us find an answer.​

Help us until then.​

If we want to make it a plea for help, repeating «help us» at the end might be one way to do it.

If we want it even shorter, this might be something:

ME/CFS devastates lives.​

It has no treatments.​

Help us find an answer.​

Help us until then.​

I just wonder if finding 'an answer' is only understood to mean finding breakthroughs that lead to treatments if you understand the language used around it by researchers etc on here?

But maybe looking for treatments sounds a bit too much like a phoenix rising type approach I don't know.

 

[Sasha]

ME/CFS devastates the lives of millions.​

It has no treatments.​

Help us find an answer.​

Help us until then.​

I find that final line simply confusing, since it doesn't say what sort of help we want - and leaves us open to BACME 'helping' us, or to them claiming that they already are.

 

[Trish]

A useful exploration of how short messaging can work, but I think we are in danger of falling into the trap of brevity over clarity.

Most people won't have a clue what this message in all its iterations is saying about what we are asking for. We know the meaning behind it, but the average doctor, neigbour, employer, funder won't have a clue what we're talking about when we say we want help or care or support, and why that's different than for any other illness.

 

[Trish]

ME/CFS devastates millions.
There is no treatment.
Many sufferers get no support or medical care.
Help us to change this.

 

[Utsikt]

I just wonder if finding 'an answer' is only understood to mean finding breakthroughs that lead to treatments if you understand the language used around it by researchers etc on here?

But maybe looking for treatments sounds a bit too much like a phoenix rising type approach I don't know.

Maybe «solution»?

I find that final line simply confusing, since it doesn't say what sort of help we want - and leaves us open to BACME 'helping' us, or to them claiming that they already are.

I agree that it asks for help without defining what the help should look like, which is something I generally don’t like. Maybe it’s impossible to get it right in this format or this particular message, so it should be addressed on its own.

ME/CFS devastates millions.​

It has no treatments.​

Help us find the solution.​

​

That would be a call for action in regards to research.

ME/CFS devastates millions.
There is no treatment.
Many sufferers get no support or medical care.
Help us to change this.

I think that could also lead to BACME style «help». I adopted your devastates millions.

 

[V.R.T.]

ME/CFS devastates millions.It has no treatments.Help us find the solution.

I like this, but think it should be millions of lives for clarity.

Also is solution the best word considering its...20th century history? Just throwing it out there but other than that I think this is a powerful way of putting it

 

[Trish]

I think whatever we say in general terms about wanting help with anything will be in danger of being answered by the likes of BACME, the NHS and all the quacks in the world as an opportunity for them to say they are helping, and to promote their views. I can even imagine the likes of Sharpe and Garner saying, 'we told them how to help themselves but they don't want to get better and attack us'. They are practiced in the art of self promotion while claiming to be silenced.

 

[Alinda]

Maybe asking for change as opposed to "help"? My mind instantly went to financial help, this being used as a slogan and asking for money by some charity.

 

[Utsikt]

I like this, but think it should be millions of lives for clarity.

Also is solution the best word considering its...20th century history? Just throwing it out there but other than that I think this is a powerful way of putting it

I see things like «we provide the ultimate green solutions for you» all the time, so I think solution is okay as long as we avoid the word final.

 

[V.R.T.]

I see things like «we provide the ultimate green solutions for you» all the time, so I think solution is okay as long as we avoid the word final.

Yeah I think you're right there.

In scientific circles solution will probably come across as JE has used it. I think my concern is that a broader audience might not understand that it means 'understand enough of the mechnism that we can design effective treatments'.

But other than outright saying treatment I think it's the best way to go. 'Answers' works too.

 

[Utsikt]

Yeah I think you're right there.

In scientific circles solution will probably come across as JE has used it. I think my concern is that a broader audience might not understand that it means 'understand enough of the mechnism that we can design effective treatments'.

But other than outright saying treatment I think it's the best way to go. 'Answers' works too.

I think most people will understand solution as «fixing the disease», and not think much about how you’d go about doing that. I just want them to understand that we need to work on it.

 

[Sasha]

I think whatever we say in general terms about wanting help with anything will be in danger of being answered by the likes of BACME, the NHS and all the quacks in the world as an opportunity for them to say they are helping, and to promote their views. I can even imagine the likes of Sharpe and Garner saying, 'we told them how to help themselves but they don't want to get better and attack us'. They are practiced in the art of self promotion while claiming to be silenced.

This is why I think we should say 'medical care'.