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

hotblack

hotblack

Senior Member (Voting Rights)
Thinking about various topics discussed recently, this sentence seems to encapsulate a lot of the problems we see and also leads to solutions needed

There aren’t any answers​

People get caught up in a lot of things because either
  • They have been abandoned by the medical profession so seek their own answers
  • Someone in the medical profession says they have answers when they don’t (this applies to the full range from BPS to alternative diagnoses and unproven or alternative treatments)
That there are answers is something perpetuated by patients, charities, governments and healthcare systems. Acknowledging we don’t have answers is the best first step. It’s also hard for all concerned so is the most controversial but really is needed to move forward.

We are looking for them​

This is the next obvious step. If we don’t have answers we need to find them. So invest in research.

And will support you until we find them​

Of course the other major piece missing is support. In acknowledging the first two points this leads to giving us the health and social care we need until we have answers and treatments.

I suggest this sentence could be a message we could use. It feels like we need something and this is relatively simple. Nothing is earth shattering or new or will magically solve things but it feels like something clear and hopefully unifying people could get behind. This is what we want our charities, governments and healthcare systems to be saying.

Just something I was thinking this morning and would appreciate others thoughts.
 
hotblack said:
That there are answers is something perpetuated by patients, charities, governments and healthcare systems.
Click to expand...

And researchers. Scheibenbogen and co claim they can identify subgroups. Some of it may be marketing to get more research funded, but I suspect they really believe they're on the right track and patients believe her.

hotblack said:
So invest in research.
Click to expand...

But preferably the right kind. Money invested in viral persistence or Amatica Health would be better off not invested at all. This will obviously receive a lot of pushback. If the sentence is aimed at governments instead of patients then BPS is a bigger problem.
 
hotblack said:
I suggest this sentence could be a message we could use. It feels like we need something and this is relatively simple. Nothing is earth shattering or new or will magically solve things but it feels like something clear and hopefully unifying people could get behind. This is what we want our charities, governments and healthcare systems to be saying.
Click to expand...
I agree, that's exactly what we want our charities, governments, doctors and healthcare systems to be saying.

It shouldn't be so hard for them to do it but it will involve both humility and being able to accept their own discomfort about not being able to offer more.
 
Sasha said:
I agree, that's exactly what we want our charities, governments, doctors and healthcare systems to be saying.

It shouldn't be so hard for them to do it but it will involve both humility and being able to accept their own discomfort about not being able to offer more.
Click to expand...

Seconded.

Thinking back to the management of MND (ALS) in the 1980s and 1990s many medical services had problems arising from the lack of any curative treatment, however once services recognised the availability of management options including medical options there was a dramatic improvement in care for this patient group. We need this recognition for ME/CFS, which must include discarding the current fantasy treatment approaches of many doctors and current services.
 
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.
 
Utsikt said:
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.
Click to expand...
This is a very good point.
 
Utsikt said:
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.
Click to expand...

I have been pondering recently what basic 'positions' about our situation we could get the largest number of patients to support, in order to have the greatest weight of numbers that we can have behind the messaging, and this is a great list. My only suggestion would be to add at the start, "ME/CFS devastates the lives of millions".
 
Andy said:
I have been pondering recently what basic 'positions' about our situation we could get the largest number of patients to support, in order to have the greatest weight of numbers that we can have behind the messaging, and this is a great list. My only suggestion would be to add at the start, "ME/CFS devastates the lives of millions".
Click to expand...
Thank you!

ME/CFS devastates the lives of millions.​
It has no treatments.​
Help us look for them.​
We need care/support until we find them.​

If anything else should be added, more women than men, and also affects children are a couple of candidates.

I tried swapping support for care because I think it emphasises the disability more. And we don’t need cheering, but action.
 
Last edited:
Sasha said:
The more detail you add, the less impact the statement will have. I wouldn't add anything else.
Click to expand...
Agree.
Trish said:
Really good ideas. I'm unclear about the purpose. Who do you envisage saying this, and to whom?
Click to expand...
My original thought was just this is sort of message I’d like to hear from government, healthcare, charities etc. The people I/we turn to for help. I hadn’t really thought beyond that.

Translating it into something we say to people or campaign or whatever is a good idea too. Although obviously needs a different message with a different tone, more like @Utsikt laid out.
 
Trish said:
Really good ideas. I'm unclear about the purpose. Who do you envisage saying this, and to whom?
Click to expand...
Maybe we could make an S4ME branded meme/image for sharing on social media. The message seems impactful and gets across both the problem of ME/CFS and what S4ME is focused on.

With slight change from:
ME/CFS devastates the lives of millions.
It has no treatments.
Help us look for them.
We need care until we find them.
Click to expand...

To
ME/CFS devastates the lives of millions.
It has no treatments.
Help us look for them.
Patients need support until then.
Click to expand...

"We" doesn't seem like it would work when talking about S4ME because there are people without ME/CFS here.

(Though I'm not a big fan of referring to people with ME/CFS as patients either. To me, a patient is specifically someone presently in the care of a medical professional.)
 
Jonathan Edwards said:
I would go for support rather than care, otherwise before you know it you will have an 'agreed care plan...' and off we go into the rehab jungle again. Both words make sense; I just think care is easier to subvert in the present context.
Click to expand...
That should probably be the main criteria: the lowest probability to end up with BPS or checkbox-healthcare.
forestglip said:
"We" doesn't seem like it would work when talking about S4ME because there are people without ME/CFS here.
Click to expand...
I took «we» to mean «pwME/CFS and their advocates, depending on the context». I was hoping it could be adopted by the associations etc., but maybe starting with S4ME is more realistic? That would require more discussions.

Perhaps it could be used to link to our factsheets when those are put as landing pages? A «learn more about ME/CFS» QR or url at the bottom of the image.

I can’t think of any alternatives to «patients».

«Until then» is better.
 
I am happy to be a part of 'we' - part of a community that needs to have its struggle appreciated. The main meaning is transparent enough.
I try to avoid talking of 'patients'. People with ME/CFS are, ironically, not patients because being a patient is defined by a relation of caring from a professional, 'which in this case they have not got'.
 
Could someone start a new thread at some point for preferred terminology. I have recently changed to ME/CFS instead of ME. I do take the time to consider change and whether I agree so I don't just follow without thinking about it.

I miss a lot of discussion and would like to know what terminology does suit better. Like support instead of care in an above post. I feel like I miss a lot and a thread would be helpful to check in on.
 
You must log in or register to reply here.
Back
Top Bottom