The KnoW M.E. Challenge

[Gingergrrl]

https://www.facebook.com/pages/KnoW-ME-Challenge/816247738446565?fref=nf

I am including a link to a new Facebook page by Tom Jarrett and his family for a new project that they started. It is called the KnoW M.E. Challenge and I apologize if this is duplicate post but I couldn't find it anywhere else on PR. I am certain that Tom posts on PR but I cannot remember under what screen name or I would tag him in this message to say THANK YOU .

This is a project to raise funds for MEadvocacy.org and The End ME/CFS Project of the Open Medicine Foundation. Here is a description from his Facebook page. I think it is an absolutely brilliant idea and his page features some really cute videos of his sons and family doing the challenge. I am sharing the message and hope others will pass it on!

The KnoW M.E. Challenge
Say it. Know it. Cure it!

Most people have never heard of the disease M.E. We challenge you to make a video of yourself (or a friend) saying "Myalgic Encephalomyelitis" 3 times in a row without practicing. If you make a mistake merely trying to say the name of the disease, then why not donate to M.E. advocacy so there can be more public awareness of this disease. Even after people know how to say the name of the disease, we still need donations to research for a cure. Post your video and challenge a friend to do the same, with these directions. Together we can change the future for those suffering with M.E.

Donate to M.E. awareness or research:

Awareness: National Public Relations Campaign for M.E.
https://meadvocacy.nationbuilder.com/donatepr

Research: The End ME/CFS Project
http://www.openmedicinefoundation.org/ways-of-giving/donate/

Tweet or share your video in honor of a friend, family member or stranger with M.E. by including in your post the patient's first name and how many years they have been sick.

Tag your videos "KnoW M.E. Challenge" so we can watch the word spread!

For more information about the disease M.E., visit:MEadvocacy.org/resources

 

[Gingergrrl]

I think I found him (after a long google site search!) and tagging @OneWaySurvival to thank you for your brilliant new campaign. I hope I am not tagging the wrong person !

 

[lansbergen]

We challenge you to make a video of yourself (or a friend) saying "Myalgic Encephalomyelitis" 3 times in a row without practicing.

That is a good one. Will give some very funny results.

 

[Aerose91]

I like the advocacy of this. TBH though, I don't even associate myself with M.E. anymore. If I tell someone that's what I have they quickly Google it and find Chronic Fatigue Syndrome. Then their whole attitude changes. "Oh, I knew some who had that, she was real tired for a few months" or " so your tired a lot huh? Maybe it's because you don't exercise"

I now just say I have either an acquired mitochondrial disease or a neuro-immune degenerative disorder. I believe those are both accurate and very honest about my condition while giving people a sense of the severity. I stay as far away as I can from saying ME anymore though

 

[lansbergen]

I would reply with: It is renamed chronic fatique syndroom because they could not pronounce Myalgic Encephalomyelitis

 

[Gingergrrl]

@Aerose91 I totally understand what you are saying and I usually tell people that I had severe mono which led to a re-activation of EBV which led to severe autonomic dysfunction, orthostatic intolerance, POTS and microvascular angina, Hashimoto's disease (all true diagnosis that I have been given by my doctors backed up by testing and documentation.) I do not use CFS for the very reasons that you mentioned.

My family and close friends know about "CFS" and the politics of how this horrible name came to be. They knew me healthy for over 40 years and they see me now barely able to breathe or walk so the label is less important to them. I do not use ME only b/c this term is still virtually unknown in the United States but maybe we can change that.

However for fundraising and advocacy we need to use ME (IMO) and get away from CFS which is just about the worst name for a disease in history. I have had minimal "fatigue" today but I am extremely impaired in my ability to function b/c ME messed up the part of my brain that controls the autonomic system and so far I have not been able to reduce the viral re-activation.

We need something catchy like this campaign (and others) to lead people to legitimate websites like MEadvocacy and OMF where they learn about the illness and how to donate money.

 

[Sushi]

I do not use ME only b/c this term is still virtually unknown in the United States but maybe we can change that.

I believe it is in the US diagnostic codes this year.

Sushi

 

[Ember]

I would reply with: It is renamed chronic fatique syndroom because they could not pronounce Myalgic Encephalomyelitis

You would be giving misinformation. ME and CFS are to be mutually exclusive diagnoses in October's ICD-10-CM.

 

[lansbergen]

You would be giving misinformation. ME and CFS are to be mutually exclusive diagnoses in October's ICD-10-CM.

They are but they claim they are the same.

 

[Ember]

They are but they claim they are the same.

Why would patients collude in this lie?

 

[Sea]

I think I found him (after a long google site search!) ...] to thank you for your brilliant new campaign. I hope I am not tagging the wrong person !

Probably not a good idea to link someone's real name and their PR identity without knowing whether they want that. We use pseudonyms to keep our identity private.

 

[Gingergrrl]

@Ember I looked at the link with the codes and if I understood it right, are post viral fatigue and ME under one code and CFS was under a newly created code?

If so I like the link that this is caused by a viral illness b/c you can test and prove viral titers (which have nothing to do with psychiatric issues.)

 

[Gingergrrl]

Probably not a good idea to link someone's real name and their PR identity without knowing whether they want that. We use pseudonyms to keep our identity private.

He linked it to PR himself when he organized the protest at P2P. He posted he and his wives names, their Facebook page, and their different videos and campaigns on PR. That is how I learned of this to begin with. I believe he wants it as widely publicized as possible to raise funds. I would never post a random persons name who had not posted it themselves and respect confidentiality more than anyone!

ETA: I am not a member of Facebook and only viewed the links that he publicly posted here on PR. I hope this clarifies?

 

[Ember]

I looked at the link with the codes....

ICD-10-CM will classify but won't define diseases. In case it helps, here's a little more information.

 

[Gingergrrl]

ICD-10-CM will classify but won't define diseases. In case it helps, here's a little more information.

@Ember Thanks for clarifying. I am confused though, if the ICD-10 only classifies the diseases (like the ICD-9) then who actually defines the new criteria? Where does it come from? I am sorry if I missed that part. Does it come from expert ME doctors (like OMI, INIM, Cheney & Peterson, etc) or from government nonsense like P2P?

ETA: Side note, I love your avatar. Did you paint it?

 

[OneWaySurvival]

Thanks for posting about the KnoW M.E. Challenge, @Gingergrrl

You are correct that we want it to be shared far and wide to start getting the public acquainted with the severe disease M.E. It starts with even being able to pronounce the name Myalgic Encephalomyelitis, which even my 3 yr old niece was able to do today, but it may surprise you that many people are unable to pronounce it let alone remember it.

Maybe this campaign can help change that.

Say it. Know it. Cure it!

Tom Jarrett
OneWaySurvival

P.S. I give credit to my wife Christine for coming up with the idea of this campaign, and we are launching it together. She is my hero.

 

[Ember]

Does it come from expert ME doctors ...or from government nonsense like P2P?

The ICD-10-CM classification follows the International Consensus Panel's recommendation in the ME Primer (ICP). But the NIH Panel continued to use ME/CFS instead. What the IOM decides to do remains to be seen.

 

[Gingergrrl]

@OneWaySurvival Thank you for saying that and for a brief second, I thought maybe I was not supposed to post it! It is a brilliant campaign and your wife, Christine, is a genius for coming up with the idea. I have been racking my brain trying to come up with a creative fundraising idea for the End ME/CFS Project but my mind is a total blank. You guys knocked it out of the park . We just have to come up with a way to really publicize this across the U.S. and world.

ETA: Please send me a PM if there is anything that I can do to help the campaign.

 

[Gingergrrl]

The ICD-10-CM classification follows the International Consensus Panel's recommendation in the ME Primer (ICP). But the NIH Panel continued to use ME/CFS instead. What the IOM decides to do remains to be seen.

So they may use the ICC criteria or make up their own random criteria? Ugh...

 

[Aerose91]

Sorry guys I didn't mean to change the direction of a positive posting, I guess it just triggered me because I would never tell anyone about this campaign due to them thinking this is the disease I have. It's the unfortunate reality but I will continue to distance myself from it.