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

[rvallee]

support can include help with daily living basics which I don’t think medical care covers

Doesn't cover but is derived from. Most forms of support for respected diseases are not medical, but they require and derive from medical assent as an explicit requirement. They don't do the support themselves, but they must approve it. They aren't just the gatekeepers, they also print out the tickets, validate the tickets, decide which tickets are valid and how many are available.

Just the same, if all along the medical profession had adopted the position that "we don't know what this is, frankly we don't even know where to begin with this, so we won't do anything, but we fully support this disabled population in doing everything they can to do so, and will participate in anything they require assistance for, as long as they fully cover the costs", we would likely already have solved this.

We would have raised huge sums of money, would have created all the basic infrastructure to do the research, the clinical networks, the tenured experts and all the downstream forms of support. We would have done the work, and all it would have taken was for the medical profession to take a back seat cheerleading position where they don't do anything on their own, but fully support us in doing their work for them. It would have required them to follow on the right path, instead of controlling everything and blocking it.

Everything here requires explicit assent, health care is entirely a "you need to ask permission for this and every single part of it" kind of thing, and permission has historically never been granted. They barely have to do anything of their own, or spend much of their own money on it. All they have to do is allow us to do their job and encourage anyone to at least support it.

The vast majority of efforts that go into helping sick people aren't done by health care professionals, it only requires their support. And they still can't even do that, still explicitly refuse to. Not even with Long Covid exposing the complete sham of their rotten biopsychosocial/psychosomatic ideology.

 

[V.R.T.]

Just the same, if all along the medical profession had adopted the position that "we don't know what this is, frankly we don't even know where to begin with this, so we won't do anything, but we fully support this disabled population in doing everything they can to do so, and will participate in anything they require assistance for, as long as they fully cover the costs", we would likely already have solved this.

If as Chris Ponting has talked about, a GWAS was actually done 15 years ago, and findings properly followed up on, we might all be living very different lives.

 

[rvallee]

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.

One framing to avoid the (much needed) blame is to go with something like "the current way is not working".

There is a current way. It's clearly not working. The blame is implicit, there will be a time for it, but for now it simply states that what has been done so far has not changed anything. I don't know how we can get across that it's literally the common loop for the same charlatans to offer themselves as the solution, but it has to be said that this way of doing things has been tried, it has failed, and it will never achieve anything.

 

[V.R.T.]

Surely while 'the answers' implies an answer biomedically, 'the solution' implies a solution to the biomedical/treatment issue AND the care and support crisis, therefore negating the need for a forth line?

I understand the need to get something about care in there but if the purpose is to draw people in to get involved with s4me, something catchier like the 3 line version would be more effective than something that also clearly conveys the need for care.

 

[bobbler]

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.

Agree

They don’t need to do any pulling apart of this they’ll just say they agree with it… so aren’t they wonderful offering the LP to save everyone and use it.

And I think in our long list of issues the generic idea that we need help is the one thing laypersons don’t deny - different matter of course when we translate that into eg getting x medical care once a year and then we might get the whole raft of excuses. We then leave all sorts of other people the option to take this and run with it turning the narrative and our reputations into what they want. And they can move faster and have an easier job and an easier sell (theirs ‘cures’ if they’ll just open their minds so this support they provide will make them more independent and positive)

And most of those who ‘like’ it are liking thinking of the illness as the mind making the body think it’s tired or needing sleep hygiene and GET. So aren’t bacme heroes. I’m not sure what this could change for the better vs worse. But it can get used to drown out more specific educating things in future rather than it laying some path for that.

It’s just we mean something very specific and complex that we are avoiding elucidating

And there is the question of why are we doing this that comes up - asking for a voice but without being clear about intentions or purpose

Even if we don’t have a specific eg sewurnceME to campaign we could be being clear about what the ‘ask’ is and not having done that work before asking people is a choice - blank checque stuff.

And they mean more of what we’ve had chucked at us to get us more motivated into fixing ourselves by working out (and they are helping us by not parking near the door) or the classic pathologisinv us being treated badly as needing to be sent to mental health rather than them (laypersons) having to hear about it (the injustice and gaps)

What is missing from most communications is saying the specifics and I’m not sure we are short on ‘in support of ‘ communications that people can either interpret to hear what they want to hear from , or, I suspect at the moment we are hitting a turning point of everyone finally getting very rightly to the point where they realise they need to critique and ask what are the intentions behind it etc because lots of hidden things others might think they’ve been kind ‘supporting in our name’ have made our lives much worse or would so I wouldn’t support them.

Which doesn’t mean they would either be baggy or not short but they would be nuanced and precise and built on discussions of what do we intend to do and not do ergo honest

 

[bobbler]

If as Chris Ponting has talked about, a GWAS was actually done 15 years ago, and findings properly followed up on, we might all be living very different lives.

I think this sort of line is better, would make more headway, and actually reads shorter to those who would be reading it (which is the most important thing, along with purpose, to confirm as a starting point) than the four lines for most purposes so it would be good to confirm what we are doing this for

 

[MrMagoo]

I don’t even like myself for writing this but…

There are no effective treatments

Before the usual suspects appear, to blather on about brain training and neuroplasticity and manifesting magical elves or whatever it is today, and the conversation gets diverted to whatever BACME and the ME A are confusing “managment” with…

 

[Jaybee00]

There are no effective treatments

No.

There are no APPROVED treatments.

Saying there are no effective treatments is an opinion.

Saying there are no officially approved treatments is a fact.

 

[Jonathan Edwards]

Saying there are no officially approved treatments is a fact.

Yes, but it is not what matters. And of course official approval depends on some people's opinions - so isn't any more rigorous. And politics comes into it a lot.

I would say there are no known effective treatments. If you want to be pedantic. But no effective treatments is the reality.

 

[StellariaGraminea]

Just catching up on the thread. I like this one for clarity and simplicity:

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

It sets the big picture - millions affected. (I think it's obvious it means millions of lives, no need to specify any further).
It outlines the key facts very briefly. And the last line implies that help is needed on the 3 previous issues... treatment, support & med. care.

 

[AliceLily]

ME/CFS has no treatments.Help us look for them.We need support until we find them.

I really like this original.


I'm not keen on "ME/CFS devastates millions". Some people switch off and don't want to know more because there is so much of it around calling for our attention. Where the original version intrigues me to know more.

Just my thoughts. I could be wrong.

 

[MrMagoo]

I think

no known effective treatments


Is powerful, because the likes of BACME seem to think they’re able to do cures, and everything about ME/CFS services at this point in 2026 really needs to remember that what it ‘can’ help with is ‘management’.

Obviously the likes of magical brain pathway bending experts and other people who deal with resetting bodily inflammation by listening to an app or eating less carbs, or writing “stop doing ME” on a piece of paper are also included in this statement.

 

[hotblack]

It’s been really good to watch how this discussion has developed and to see different people’s thoughts.

We seem to have the shape of something. I collected a few of the options, maybe we could just run a vote to find what’s most popular? Or what phrases people like most individually? We could probably mix and match a bit into a couple of differently targeted messages?

Deciding on an aim may be useful as that can guide wording. Lots or options here though. A campaign, a forum slogan, a message we get other people or organisations to support, something we individually or collectively send to governments….

I think this covers the options (there’s some logical grouping and branching here in my head but I have no idea how to easily represent it well, but hopefully people get the idea)

ME/CFS affects millions
ME/CFS devastates lives

We don’t yet have the answers (for ME/CFS))
There are no effective treatments (for ME/CFS)

Many get no appropriate support or medical care (edit: added appropriate)

Help us find them
Help us look for them

Help us to change this

Support people with ME/CFS
We need support until we find them
And support us until we do (edit: could prefix support with appropriate in these phrases too)

 

[hotblack]

On the mix and match thinking, if we had terms we all liked then the precise usage may vary

So along my original line of thinking we could have a catch all message of:

There are no effective treatments for ME/CFS​

Help us find them​

And support us until we do​

Maybe if we were running a campaign or writing a letter focussed on the need for care and support we could go for:

ME/CFS affects millions​

Many get no support or medical care​

Help us to change this​

While if we were focussing on research it could be:

ME/CFS affects millions​

There are no effective treatments​

Help us look for them​

 

[Trish]

They are all good, and vary in suitability for different contexts, I think.

 

[Sean]

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.

Brevity and clarity work together, but they are not the same. Make it too brief and you start losing clarity by leaving out critical info.

I agree that it asks for help without defining what the help should look like, which is something I generally don’t like.

We do need to to be very careful that how we frame requests for help cannot be hijacked and perverted by BACME, et al, into meaning we just need more of their kind of 'help', as opposed to real help.

One framing to avoid the (much needed) blame is to go with something like "the current way is not working".

Something like this.

 

[hotblack]

While I understand the concern and we should of course consider hijacking from the usual suspects, I think we also need to be careful we don’t spend too much time focusing on what they may do to the detriment of our own messaging or actions.

Edit! That said I just realised ‘appropriate support’ may be better than ‘support’ because well, we have all been offered support right! A bit like ‘effective treatments’ as opposed to ‘treatments’.

They are all good, and vary in suitability for different contexts, I think.

That’s the other way of looking at this, we’ve had a nice community brainstorm, got loads of great ideas, so now have things if or when we need them. Nice work all!

 

[richie]

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 exactly the problem and we have to be subtle. If BACME, BPS, whoever you view as quacks etc etc are going to take advantage anyway, then what is the harm in being splitters and saying "OK you 've got you lot who present as ME/claim to/are claimed to presnet thus, get on with them and do not make unfounded assertions that there are not vast numbers who you cannot help, thru no evident fault of the sufferers and do not dare present of patient attitudes as the reason that they do not respond". I know peoplel fear any concession encourages but the opposite encourages too and it makes us look doctrinaire and monolithic as they have been and too often still are. And basically we are still diagnosed by symptoms and it is not at all inconceivable that within a mixed bag you will have some who do benefit from sth. and these may really require differentials e.g speaking "LP responsive syndrome presenting as ME". Fair enough if people on here say I am not a suitable person to speak as I now have a differential in sarcoid, but that was not the established case for 30 odd years. My phrases do nt make a snappy slogan but whatever we come up with needs imo to accommodate the thoughts I am having as BPS fundies will attack on these weak points and we have done all that before.

 

[Trish]

That said I just realised ‘appropriate support’ may be better than ‘support’ because well, we have all been offered support right! A bit like ‘effective treatments’ as opposed to ‘treatments’.

Good points, I agree qualifying in this way is very helpful.

we’ve had a nice community brainstorm, got loads of great ideas, so now have things if or when we need them. Nice work all!

Yes, thanks for starting the thread.