CFS/ME needs to go viral.

[catly]

To be honest, I think doing something similar anytime within the next six months would be a bad idea. We don't want people to become desensitized.

Although as a Marketing Major, this was absolutely brilliant from ALS.

What if we planned something BIG for May 2015. That gives us some time to plan. Llewelyn King has already proposed a Mother's March for ME on May 12, 2015. Seems that @medfeb is looking for volunteers to help.

We could kick of the month of May with some sort of campaign. 2014 marked 30 years of little to no progress for ME in the US. Maybe we make 2015 the year that brings an end to the silence and the suffering by raising awareness and increasing funding for research.

We could create a web/facebook page that provides links to the research and advocay groups we want to support. Then we need a creative way to get the message out (like the icebucket challenge) and if we can all get a handful of people to donate and share the message, it might not yield as much as the ALS challenge, but then anything is better than nothing and creating awareness is key.

The ALS foundation kicked off the campaign by sending a message to 60,000 people. That's a lot especially considering the disease effects an estimated 10,000 - 30,000 people in the US each year vs. the estimated 1,000,000 with MECFS. I'm not sure how we would find that many people to start a campaign????

Let's keep the ideas coming everyone.

Meanwhile, I'm going to send @medfeb a pm, I'd like to help with the the mothers' march at least.

 

[Seven7]

If each one of us send to family and friends the millions would be easy to reach.

 

[catly]

Wow, the ALS contributions are up to $41 million vs. $2 million last year.

This young man with ALS who helped get this off the ground was on the local news tonight. Well done Patrick!

Let's get those creative juices flowing PR followers!

 

[Gingergrrl]

What if we planned something BIG for May 2015. That gives us some time to plan. Llewelyn King has already proposed a Mother's March for ME on May 12, 2015. Seems that @medfeb is looking for volunteers to help.

Just my opinion, but I don't know if a march is the best idea for ME/CFS b/c most sufferers are too ill to travel to Washington or to actually march. And if it is just for the mothers of sufferers, unless the sufferers are children (which some of course are!) then it eliminates a whole group of people as my own mom would not be able to travel and march. Many sufferers are older so their mother's may be elderly or deceased.

My other concerns are that there are frequent marches on Washington for all kinds of causes and no one really pays attention to them b/c they are just a one day event. Also, a march is a very active event and I would want to show the world that people with ME/CFS are too ill to march and not give a false impression.

Ideally it should be an ongoing campaign like what ALS did, so it goes viral and people learn about it over a span of a few weeks or months versus a one day march. I don't mean to be critical, and others may disagree with me on this!

 

[acouchy]

I think the ALS Ice Bucket Challenge is absolute genius. I LOVE the idea of doing a ME/CFS challenge to raise awareness and research funds. I think next May to coincide with awareness day would be perfect. I think any sooner than that would be too early.

I have no idea how to execute such a thing. If a current organization would take it on or if a new charity would need to be created.

Here are my thoughts...
- I think CFS should not be used. I think only ME should be used.
- The challenge itself needs to be fun or shocking.
- The challenge needs to be easily accessible. (e.g. pretty much everyone has easy access to a bucket, ice and water)
I know the ALS challenge has raised awareness but from what I have seen it is also being used as shameless self promotion. I think that is why it is so successful in this age of selfies.

I have been wracking my fibro fogged brain and I finally had a challenge idea. How about... The Spoon Challenge? The fun act of trying to balance a spoon on your nose. Not quite as shocking as a bucket of ice water dumped over the head but it is a bit of fun, it goes nicely with the spoon theory and invisible illness and a spoon is easily accessible.

 

[Snowdrop]

Trying to relate the activity to be somewhat meaningful to our situation is difficult. What's really appealing isn't really workable.
I'm thinking of John and Yoko's bed in for peace.
How about challenging people to lay down on 'challenging' surfaces and trying to get comfortable?

I'm just throwing this idea out hoping it might spur other more doable ones.

 

[Gingergrrl]

@Snowdrop I like your idea and I feel like we need something workable and interesting/entertaining to watch (equal to the bucket of ice water getting poured over people) but something that also educates and relates to ME/CFS. That is why I feel like a march is unrealistic b/c those with ME cannot do it and could portray the wrong message.

I like the idea of trying to lay down on challenging surfaces or laying down in random/inappropriate places where one would not normally lay down to show that sometimes with ME, you just need to lay down wherever you may happen to be!

I think as a group we can come up with a really creative idea, we just need funding behind it which doesn't seem to be coming .

 

[taniaaust1]

Trying to relate the activity to be somewhat meaningful to our situation is difficult. What's really appealing isn't really workable.
I'm thinking of John and Yoko's bed in for peace.
How about challenging people to lay down on 'challenging' surfaces and trying to get comfortable?

I'm just throwing this idea out hoping it might spur other more doable ones.

That might draw attention but it probably would end up being some bad attention as I can imagine some stupid kids laying on the edge of building and trying to balance there. Someone would end up hurt

 

[taniaaust1]

Selfies seem to be the in thing esp with the younger generations. I suggest to have a campaign where a site is set up and people post their most unattractive or out of it, "Im wrecked" selfies.. Some of those would be funny. It would be funnier then just in the bed selfies.

Someone could write to celebratories and get them to kick it off by posting their most out of it selfies to support (or get photos in advance from any celebratories who want to be involved to put up somewhere when the campaign starts).

 

[Little Bluestem]

Many of us do not look that bad, even when we are feeling bad.

 

[alex3619]

Someone has already posted an ice bucket challenge re ME:

Thanks to @Traskin for this link.

 

[Snow Leopard]

I prefer the rubble bucket challenge:
http://www.fastcompany.com/3034806/...bble-bucket-challenge-to-support-palestinians

I don't understand the "ice bucket" challenge. What does that have to do with ALS? It seems to be a hit, but what effect has it had on outcomes for people with ALS eg better services or more research?

 

[Sasha]

I don't understand the "ice bucket" challenge. What does that have to do with ALS?

It has absolutely nothing to do with ALS and I don't think that that's a problem. It's a small and slightly exciting personal challenge, it's fun to watch, it's quick and it's funny. That's why it's been a success.

It's also mainly not being done by people with ALS but by people who support the cause. I think that's important. I personally don't think that it's necessarily a good idea to have a challenge that PWME can do themselves because we already suffer from a widespread misperception that what we can be seen doing in a one-minute period of time is something that we can do whenever we want, like a healthy person. Imagine if you didn't know about ME but saw a lot of PWME doing the ice-bucket challenge. Wouldn't you think they were healthy, to be able to get the heavy bucket and the ice together, to set up their video, to lift that ice-bucket, to deal physically with the shock of the ice-water?

I also think that a challenge that a PWME can do is, almost by definition, the opposite of a fun challenge for anybody else, and to be avoided (unless anyone can think of anything that's actually fun for everyone).

I think we need a fun challenge for our healthy supporters.

It seems to be a hit, but what effect has it had on outcomes for people with ALS eg better services or more research?

It only started in mid-July as a way of raising money for ALS (prior to that, interestingly enough, it had been being used to fundraise for other things):

http://en.wikipedia.org/wiki/Ice_Bucket_Challenge

I think that it's far too early (six weeks!) to expect it to have had practical impact on services or research but here's Wikipedia on its huge, enormously positive effect on fundraising:

After the Ice Bucket Challenge went viral on social media, public awareness and charitable donations to ALS charities soared. The New York Times reported that the ALS Association had received $41.8 million in donations from July 29 until August 21. More than 739,000 new donors have given money to the association, which is more than double the $19.4 million in total contributions the association received during the year that ended January 31, 2013.[27] Similarly, the ALS Therapy Development Institute reported a ten-fold increase in donations relative to the same period in 2014,[28] with over 2,000 donations made in a single day on August 20, 2014, while Project ALS reported a 50-fold increase.[29]

The ALS Association, which had raised $64 million in all of 2013, raised more than $10 million on Thursday, August 21, 2014 alone.[30]​

 

[Snow Leopard]

The difficulty for is that although many people are unfamiliar with ALS, it is not stigmatised in the same way as ME/CFS.

The danger is that for a similar sort of viral campain for ME/CFS, is that people (who are ignorant - which is most people) will just think 'who cares, CFS is just made up anyway' and not bother do raise awareness or do anything.

TIMING IS EVERYTHING!

I think the best timing would be at the same time as the release of an awareness film, such as Jen Brea's Canary in a Coal mine. Jen has some serious hook-ups marketing wise and in terms of effectiveness, it would be better to combine efforts.

 

[daisybell]

Wheelbarrow rides? A challenge to push a barrow with someone in it for 50 metres.... Videoed and timed, with some sort of prize for the fastest/funniest/most original etc......
With the message being that life with ME is either being stuck in the barrow or feeling like you are pushing one all the time??

 

[helperofearth123]

CFS/ME definitely needs a successful campaign like this. Which are the largest CFS/ME organizations? Do they have email lists, if so, how many subscribers? If we have a 'delivery method' to spread the idea to the world, we just need to think up a great idea.

 

[Sasha]

CFS/ME definitely needs a successful campaign like this. Which are the largest CFS/ME organizations? Do they have email lists, if so, how many subscribers? If we have a 'delivery method' to spread the idea to the world, we just need to think up a great idea.

In the UK, the combined mailing list of MERUK, MEA, AfME etc. is upwards of 10,000, I think.

 

[Nielk]

How about a singing challenge - like a few lines from a specific song? Easy to do and challenging when one is not a trained singer. It also might be funny to watch.

 

[Sasha]

How about a singing challenge - like a few lines from a specific song? Easy to do and challenging when one is not a trained singer. It also might be funny to watch.

There's a UK radio panel game which has a regular slot in which people have to sing the words of one song to the tune of another - can be very funny with the right choices.

 

[Gingergrrl]

I don't know exactly how this would work but I was thinking of some kind of an educational campaign (like a public service announcement) as part of our project.

I was picturing something like a child asking his/her mom about ME/CFS (basic questions that we want the American and World public to know) so we could provide the accurate data in the answers to refute the false info and stigma.

I was also picturing some kind of a contest with prizes (like the people who watch the PSA then have to take a quiz and get the answers correct) to be entered to win something. The quiz could be located on an ME/CFS website that we KNOW has accurate information- not sure which one that would be since all the CDC stuff is wrong.

I thought of this because people like things that are interactive on social media and they would be more motivated if they can win something. This is just a rough idea and I have zero background in marketing!