International Awareness Day - The 12 Days of May Project

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I'd like to post one suggestion each day prior to International Awareness Day starting on May 1st of twelve ways each of us an support ME/CFS and FM Awareness

I've come up with seven so far.. Any other ideas?


Enroll in the Solve ME/CFS Initiative's Biobank and Patient Registry
Join the ME Action Network
Support one ME/CFS/FM organization
Put yourself on the ME/CFS and FM Disease Map
Find out how much the NIH spends in ME/CFS and FM
Tell Your Story on the Solve ME/CFS Initiative's Page
Tell Your story on Health Rising's Lives Interrupted Project (coming soon)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Maybe

Enroll in an ME/CFS or FM study?
Sign up for Jennie Spotila's blog?
 

Seanko

Well-Known Member
  • Sponsor somebody on Walk for ME 2016 or similar fundraising event
  • Interest a local newspaper in ME Awareness Day (tell your own human interest story, newspapers like them)
  • Watch some of the videos on the rather good Dutch ME/CFS Society Youtube channel: includes Alan Light, Lucinda Bateman, Julia Newton
    Wetenschap voor Patienten - ME/cvs Vereniging (in English with Dutch subtitles)
  • Post something on Facebook so family & friends can see (I don't normally mention it)
  • Make a video for YouTube: relatively easy if you have a webcam or smartphone (don't worry if you can't!)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
  • Sponsor somebody on Walk for ME 2016 or similar fundraising event
  • Interest a local newspaper in ME Awareness Day (tell your own human interest story, newspapers like them)
  • Watch some of the videos on the rather good Dutch ME/CFS Society Youtube channel: includes Alan Light, Lucinda Bateman, Julia Newton
    Wetenschap voor Patienten - ME/cvs Vereniging (in English with Dutch subtitles)
  • Post something on Facebook so family & friends can see (I don't normally mention it)
  • Make a video for YouTube: relatively easy if you have a webcam or smartphone (don't worry if you can't!)
Thanks - maybe I should a month beforehand :) I like the idea of the 12 Days of May though.
 

Seanko

Well-Known Member
Thanks - maybe I should a month beforehand :) I like the idea of the 12 Days of May though.
For obvious reasons we are not able to do all of them in a short space of time but maybe a few of them over a longer period.

Meeting a friend tomorrow to brainstorm what we can do with minimal effort. :)
 

GG

Well-Known Member
For obvious reasons we are not able to do all of them in a short space of time but maybe a few of them over a longer period.

Meeting a friend tomorrow to brainstorm what we can do with minimal effort. :)
yes, I do a little here and there. The 1 thing I cannot do now, is donate funds, no income, working on getting disability. Although i did in the past, when i was working.

Planning on getting my Dr to sign/fill out the Biobank paperwork. He says I fit the IOM description.

NIH spends about 5 to 6 Million a year on ME/CFS, thought it was only $1 a patient, I think that is for the real good research, not the psycho stuff!. I think the ME/CFS population numbers range from 1 to 4 Million, depending upon the study and what definition/criteria they use, right?

And on a per patient basis, spends less on Fibromyalgia!

GG
 

Who Me?

Well-Known Member
@Seanko like you I never talk about mecfs on facenook but what I do is use some ME related thing for the big background pic.

I usually have a quote from Laura hillenbrand but right now it is about ME awareness.

(I could not remember hillenbrand's name. After a few minutes I finally remembered Seabiscuit. But I still had to google because I could not remember the author. ME brain lol)
 

candi P

Member
Hello Everyone, I am including a link to a change.org petition to increase funding for this illness at the NIH. A young woman in Louisiana started it and it is now over 24,000 signatures which automatically sends an email to the head of the NIH and Francis Collins. There is real momentum here and at the right time for the ME/CFS awareness month. Please sign and forward to anyone and everyone who may be interested.

https://www.change.org/p/increase-funding-so-we-can-find-a-cure?recruiter=519552332&utm_source=share_petition&utm_medium=copylink
 
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Seanko

Well-Known Member
@Who Me? Yes, you want to tell people without being over bearing. There are enough trying to sell a product or service.

There's also the problem of being judged, symptoms are so variable. People will only see you on a good day but not see you during the bad spells.

@GG South sounds like you're doing plenty. Good to hear about the biobank. The fact that you are on this site shows you're doing your bit sharing knowledge & resources. Getting accurate information to others out there is vital.
 
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Who Me?

Well-Known Member
@Seanko. It stops people from telling me about miracle cures or from pitying me. I'll never see any of them so .....

And whenever I change it no one ever asks me about it. People don't care.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Hello Everyone, I am including a link to a change.org petition to increase funding for this illness at the NIH. A young woman in Louisiana started it and it is now over 24,000 signatures which automatically sends an email to the head of the NIH and Francis Collins. There is real momentum here and at the right time for the ME/CFS awareness month. Please sign and forward to anyone and everyone who may be interested.

https://www.change.org/p/increase-funding-so-we-can-find-a-cure?recruiter=519552332&utm_source=share_petition&utm_medium=copylink
That's an amazing petition. I had never seen it before and it has over 24,000 signatures...Wow....It's definitely on the list. Thanks
 
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Merry

Well-Known Member
Forgotten Plague is offering to send members of Congress a dvd of the film plus a letter from Blue Ribbon through May 19th for $10 per Congressional Pack. http://www.forgottenplague.com/product/congressional-pack/

With the announcement of the new NIH intramural and extramural programs to research ME/CFS as well as the introduction of important new legislation, such as the House’s 21st Century Cures Act, Sen. Susan Collins’ S.2745 and Sen. Lamar Alexander’s S.2742 calling for important increases in the budget for underfunded diseases, advocacy, awareness and fundraising efforts conducted now will be more potent than ever before. At the Blue Ribbon Foundation, we are joining #MEAction’s #MillionsMissing protest, as well as other ME/CFS advocacy efforts, by offering this congressional pack at cost to send to congressmen/women and state representatives before the protest. The packs are available now and the offer will end on May 19th to give us time for shipping. We will ship all orders directly to representatives the following day.
Follow up your order by emailing or calling your representatives, personally. The impact of this initiative will grow exponentially with follow up emails and phone calls from everyone that participates.
 

Seanko

Well-Known Member
@Seanko. It stops people from telling me about miracle cures or from pitying me. I'll never see any of them so .....

And whenever I change it no one ever asks me about it. People don't care.
Yes, many people just don't know what to say around illness. Our target audiences are other patients, the medical profession & as @Merry points out politicians in Washington, London & other capitals.

Probably best not to bother with anybody posting 25 selfies a day or hourly updates on Kim Kardashian. :p
 

Who Me?

Well-Known Member
My friends are mostly people I went to high school with in the 60's so not much Kim K. stuff.

I don't think it's because they don't know what to say. I think it's because after a "how are you" and "have you tried vitamins C", they don't care because they have their own lives.
 

Seven

Well-Known Member
I think changing your photo to shoes in the driveway in FB is great idea, if a lot of people do it people will get curious about it. And maybe @Cort you can have a great short article explaining on what ME is and link to donatations so the traffic can go somewhere if they get curious.

Also, My work runs a news paper (reaches 1000+) People Where I want to put something but I suck at writing since English is my second language. So if I can get an article I can post it locally and send it to my local newspaper and stuff. Let me know if you are ok to do so. I will get it publish if somebody can do the writing.
 

Who Me?

Well-Known Member
Hello Everyone, I am including a link to a change.org petition to increase funding for this illness at the NIH. A young woman in Louisiana started it and it is now over 24,000 signatures which automatically sends an email to the head of the NIH and Francis Collins. There is real momentum here and at the right time for the ME/CFS awareness month. Please sign and forward to anyone and everyone who may be interested.

https://www.change.org/p/increase-funding-so-we-can-find-a-cure?recruiter=519552332&utm_source=share_petition&utm_medium=copylink
Someone else posted this petition
elsewhere

http://www.healthrising.org/forums/threads/change-org-petition-for-me-cfs-has-almost-25-000-signatures-add-yours-now.4209/
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I think changing your photo to shoes in the driveway in FB is great idea, if a lot of people do it people will get curious about it. And maybe @Cort you can have a great short article explaining on what ME is and link to donatations so the traffic can go somewhere if they get curious.

Also, My work runs a news paper (reaches 1000+) People Where I want to put something but I suck at writing since English is my second language. So if I can get an article I can post it locally and send it to my local newspaper and stuff. Let me know if you are ok to do so. I will get it publish if somebody can do the writing.
OK good idea Seven
 

GG

Well-Known Member
Forgotten Plague is offering to send members of Congress a dvd of the film plus a letter from Blue Ribbon through May 19th for $10 per Congressional Pack. http://www.forgottenplague.com/product/congressional-pack/
That is good to know, what happens if your Congress Person already is set to get a copy? Wish I had an income, I would do that!

Doesn't appear they have a Newsletter, not sure how you found that out, but that might motivate some people to buy it and send it along!!


GG
 

Merry

Well-Known Member
That is good to know, what happens if your Congress Person already is set to get a copy? Wish I had an income, I would do that!

Doesn't appear they have a Newsletter, not sure how you found that out, but that might motivate some people to buy it and send it along!!


GG
My source of information about this was a post by Tom Kindlon on the Co-Cure list. And he got the information from meaction.net:

http://millionsmissing.meaction.net/virtual/

Sorry about your financial problems, @GG. I hope you get your disability soon. Yes, it would be nice to know if someone else has ordered for a particular Congressperson. Will Congressional Packs end up in the trash?

By the way, in case this wasn't clear, the people at Forgotten Plague will mail the dvd and letter.
 
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