MEAction Seattle Banner Poll- 2 Banners will be made

Hello Everyone and Thank you for the Input.

My Parents will be taking with them 2 Banners so *pick 2 Poll Options*

****please vote as soon as you can so that we can get these made****

@aaron_c is my top pick but is to large for a banner for my parents to hold and for people to see...thank you.

@JaimeS aaron_c's banner is very powerful like you noted is their anyway this could be made up for the protest? Just a thought.

Thank you again everyone!

 

I don't suppose they could hold a banner between them hung from a shower-rod-sized piece of wood? It would make a great photo-op for the paper! But I also voted for two of the above choices. I'm just thrilled that people are marching!

 

My parents are elderly and holding up a big banner would not be possible for both of them...I thought of that already....

I am hoping MEAction can take hold of your suggestion and create this banner for one of the many protests....its very powerful

Thanks

 

Big thanks to your parents for doing this for us! I voted too.

 

I like this one:
"HISTORY WILL RECALL. YOU DID NOTHING AT ALL! ME/CFS CLINICAL TRIALS NOW!"

Does a clinical trial only happen with prescriptions? I didn't pick it because I wasn't sure.

I don't like the use of the word money, how about Funding? I think the public might think we are money grubbing, lots of people are hurting financially right now!

"NIH and CDC. ME/CFS WON'T WAIT! ME/CFS MONEY NOW!"

Like this one:

Stop the Harm! Start the Treatment! Start the Research!!!!"

Seems like Research should be before treatment though? and perhaps before Treatment we could use the word "Real"? We do get treated for symptoms, but those are just band aids

Just realizing you probably have space limitations and that is why the way some of these are worded?

GG

 

Stop the Harm! Start the Treatment! Start the Research!!!!"

I agree, @*GG* -- You wouldn't start the treatment before the research.

Stop the harm, start the research is probably good on its own...

-J

 

I second that.

 

I'd like to have NIH/CDC/HHS mentioned in at least one, and ME/CFS mentioned in at least one. Preferably mentioned in both, because it makes it clear who needs to be helped and who needs to do it.

And I agree ... use "funding" in place of "money" on the relevant slogans.

 

Any suggestions.....?

 

HHS: ME/CFS won't wait! Fund research now!
HHS: Stop the harm! Start the ME/CFS research!
#MillionsMissing - Don't let HHS abandon ME/CFS!

 

All good all added

 

Thanks @Valentijn for your suggestions there are 3 more added to the poll.

 

I personally want treatment NOW!!! There are treatments available that people are experimenting with and are having a measure of success with such as Ampligen, some antivirals, Rituxan. I think they should make these readily available to any of us who want them as soon as possible.

They can continue funding research and adding to the 5,000 studies BUT it's over 30 years and long past time for TREATMENT! I don't think it's out of line at all to push for treatments!

 

I'd definitely like to see the word 'TREATMENT' somewhere in there.

 

It's just that so far, it's by chance that we've found things that work, as Edwards et al. pointed out recently.

'Approve successful treatments' might be a good line.

-J

 

Something along those lines would be great @JaimeS

 

HISTORY WILL RECALL. YOU DID NOTHING AT ALL! ME/CFS CLINICAL TRIALS NOW!

I kind of think that this last bit might read, "ME/CFS RESEARCH NOW!" rather than clinical trials. Clinical trials require something to test, and while WE know there are already things to test in clinical trials for ME/CFS (rituximab? LDN?), it sounds like putting the cart before the horse to people who don't realize that we HAVE treatments that are successful in individuals but haven't been approved by the FDA...

'research' rather than 'clinical trials' is still accurate, but doesn't have this feel.

-J

 

I will put it in. thanks for your input.

The only problem I see with this is that MS for Example they dont know the exact cause especially RR MS but they have effective treatments.

Another example is in HIV they know the virus but they do not know how ot get rid of it..

Same for lupus, SS, etc.

We are at a point where we just need options for treatment and a billion $s in research funds to make up for the mishandling of the disease.

 

I just heard that the University of Washington is doing a trial on making old dogs seem young and full of vigor again. They are using rapamycin. It seems I have heard that word here?

UW cares more about YOUR DOG than MY ME/CFS.

I wish I could go to the march. And strangely, I'm not sure I can find anyone to go FOR me. Too lazy???

Is this an empty shoes event?

 

So many things you can do even if you don't go, @Strawberry ...

10 things you can do for #MillionsMissing with limited spoons