The KnoW M.E. Challenge

[Ember]

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

You make an excellent case for taking the KnoW M.E. Challenge!

 

[Gingergrrl]

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.

You did not change the direction of the thread and were just posting what you felt so no worries! I think if some day ME is classified separately from CFS, this will not be as big of a concern. For me, I am less worried about the stigma and just want to spread the word in any way that I can to help raise funds to find a cure. My number one goal is to get better and my friends and family support that goal no matter what ridiculous label the US government puts on the disease. They do not define me. Anything legitimate that raises funds for the scientists at OMF working on solving this illness is thrilling for me.

 

[Ember]

I think if some day ME is classified separately from CFS....

In the U.S., that day will be October 1, 2015 when the ICD-10-CM comes into effect.

 

[Aerose91]

In the U.S., that day will be October 1, 2015 when the ICD-10-CM comes into effect.

That sounds hopeful, but I wonder what the definition will be for ME vs the definition for CFS and how they will differ.

It also confuses me that they say this is more popular than MS. I have met people with MS, I've also met more than a few people with CFS but I'd never even HEARD of M.E., let alone met anyone with it until I got It. Also considering almost none of the doctors I had, had even heard of ME (and these are very quality functional physicians)

In terms of the REAL M.E., how common really is it?

 

[Ember]

In terms of the REAL M.E., how common really is it?

Frank Twisk reported these numbers last year:

Prevalence and Impact
Nacul et al. (2011) found that 0.19% of 143,000 individuals (18–64 years) met the commonly used Fukuda criteria for CFS (Fukuda et al., 1994), while 0.11% met the more strict criteria for ME/CFS (Carruthers et al., 2003), including post-exertional malaise. Prevalence rates of ME (Carruthers et al., 2011) remain to be investigated, but based upon (Nacul et al., 2011; Jason et al., 2012b; Maes et al., 2012a; Brenu et al., 2013) it is estimated that 30–50% of the subjects meeting the CFS (Fukuda et al., 1994) criteria fulfill the more stringent criteria for ME (Carruthers et al., 2011).

 

[Gingergrrl]

I have met people with MS, I've also met more than a few people with CFS but I'd never even HEARD of M.E., let alone met anyone with it until I got It. Also considering almost none of the doctors I had, had even heard of ME (and these are very quality functional physicians)

I think no one in the U.S. including doctors have heard the term ME b/c it just is not used here. I had not heard of it myself until I found PR in June 2014 and only knew of the term CFS. I worked in the healthcare field for 16 years (12 yrs in a hospital, yet never heard this term, only CFS.) So I don't think the fact that this term is not used in the US reflects on the prevalence or severity of the illness.

 

[Sasha]

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.

Great that you're all doing this advocacy, Tom - I hope you raise lots of money!

 

[Roy S]

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.

A video of your three year old niece saying myalgic encephalomyelitis myalgic encephalomyelitis myalgic encephalomyelitis would probably be seriously cute.
In October 1992 I talked to my dear departed friend Tom Hennessy about an idea I had for an awareness and lobbying day. He founded the May 12th Awareness Day from that.
Good luck with this. I like it.

 

[Aerose91]

I think no one in the U.S. including doctors have heard the term ME b/c it just is not used here. I had not heard of it myself until I found PR in June 2014 and only knew of the term CFS. I worked in the healthcare field for 16 years (12 yrs in a hospital, yet never heard this term, only CFS.) So I don't think the fact that this term is not used in the US reflects on the prevalence or severity of the illness.

Makes sense. I wonder if once the diseases are separated, separate treatments will be given as well

 

[Ember]

I wonder if once the diseases are separated, separate treatments will be given as well

As a start, the Evidence Report finds no grounds for treating ME patients with CBT/GET.

 

[Aerose91]

As a start, the Evidence Report finds no grounds for treating ME patients with CBT/GET.

Well that could save some lives right there.

 

[Gingergrrl]

Makes sense. I wonder if once the diseases are separated, separate treatments will be given as well

@Aerose91 My guess is that this will take many years (or decades?) to occur unless a real cure is found (which cannot happen without funding for research from the government.) I am hopeful that the ICD-10 will be listing ME as a separate disease from CFS which means this new diagnostic code can now be used for insurance and disability unless I am understanding this wrong?

As far as treatment, I doubt anything will change unless this illness (ME) is taught in American medical schools which it is not. If new young doctors actually learned about it, this could really change things but sadly I am not that hopeful. But, it is still a step in the right direction IMO.

As a start, the Evidence Report finds no grounds for treating ME patients with CBT/GET.

@Ember When you say the "Evidence Report", what do you mean? Sorry if you already explained this to me and I didn't retain it.

 

[Ember]

When you say the "Evidence Report", what do you mean?

The Evidence Report (December 2014) was commissioned to inform the recent work of the NIH Panel: “This evidence report is based on research conducted by the Pacific Northwest Evidence-based Practice Center under contract to the Agency for Healthcare Research and Quality (AHRQ).”

 

[OneWaySurvival]

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

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.

Hi @Aerose91 . I must say it made me sad to read your posts and to consider that the current state of public opinion/perception/policy regarding our disease could be so blatantly warped to actually cause pwME's to be embarrassed about their own disease. I don't fault you for thinking this way, in fact, I've also at times been tempted to avoid talking about M.E. so as to avoid smug expressions and dismissive comments. But I finally put my foot down and said no more. And I have gotten more into advocacy recently, including the P2P protest last month. There is too much at stake for too many of us to let other people's ignorant views hold up the relief we need.

But seeing what this oppressive stigma is still doing to many with M.E. just makes me sad and more than a little bit mad for all of us.

However, I hope you can take courage from one recent example of a legitimate hero (the man behind Unbroken) showing deep and genuine respect to a patient with M.E. I explain the amazing, true story in this recent KnoW M.E. Challenge video. I have a feeling there are many people who don't know this story.

I think a new day is dawning for people with M.E. where we don't have to feel an ounce of shame about our disease, and instead we can boldly declare the urgent need for relief for a community of suffering people and where we loudly demand a halt to the unnecessary progression of new cases of M.E. that wrecks one life and one family every time the disease spreads unchecked.

Patients disabled by M.E. immediately need access to biomedical treatments, disability income, insurance reimbursement for all manner of tests and therapeutic procedures (as alluded to in Miriam Tucker's brilliant Medscape article Wrong Name, Real Illness - requires free account registration to view) as well as specialized medical equipment such as power reclining wheelchairs, electric recumbent trikes, TENS units and other Durable Medical Equipment designed to alleviate or accommodate symptoms or improve quality of life while research into cause(s) and cure(s) can be aggressively funded and carried out.

None of this can happen until we speak up and say the name of our disease and get the healthy public to join us in both knowledge and spirit.

I am not trying to talk you into personally taking the challenge, especially if you are not comfortable saying you have M.E. However, I hope progress in public perception will come quickly for all of us, and beyond opinions, I hope for substantial increases in private and public funding into M.E. research. Further medical breakthroughs will join the growing scientific base already forming a picture of a devastating organic disease, and make it far easier for patients with M.E. to say what we already know in our hearts. We deserve biomedical treatment and we deserve respect.

 

[Gingergrrl]

Hi @Aerose91. I must say it made me sad to read your posts and to consider that the current state of public opinion/perception/policy regarding our disease could be so blatantly warped to actually cause pwME's to be embarrassed about their own disease. I don't fault you for thinking this way, in fact, I've also at times been tempted to avoid talking about M.E. so as to avoid smug expressions and dismissive comments. But I finally put my foot down and said no more. And I have gotten more into advocacy recently, including the P2P protest last month. There is too much at stake for too many of us to let other people's ignorant views hold up the relief we need.

@OneWaySurvival Good for you and your advocacy is going to help many people. I got your PM and definitely plan to help you as soon as I am feeling a tiny bit stronger. (I also fully understand where Aerose91 is coming from.)

But seeing what this oppressive stigma is still doing to many with M.E. just makes me sad and more than a little bit mad for all of us.

Me, too.

I think a new day is dawning for people with M.E. where we don't have to feel an ounce of shame about our disease, and instead we can boldly declare the urgent need for relief for a community of suffering people and where we loudly demand a halt to the unnecessary progression of new cases of M.E. that wrecks one life and one family every time the disease spreads unchecked.

Amen!

Patients disabled by M.E. immediately need access to biomedical treatments, disability income, insurance reimbursement for all manner of tests and therapeutic procedures... as well as specialized medical equipment such as power reclining wheelchairs, electric recumbent trikes, TENS units and other Durable Medical Equipment designed to alleviate or accommodate symptoms or improve quality of life while research into cause(s) and cure(s) can be aggressively funded and carried out.

Do you really think this could happen? I can't imagine insurance paying or reimbursing us for anything!

I am not trying to talk you into personally taking the challenge, especially if you are not comfortable saying you have M.E. However, I hope progress in public perception will come quickly for all of us, and beyond opinions, I hope for substantial increases in private and public funding into M.E. research. Further medical breakthroughs will join the growing scientific base already forming a picture of a devastating organic disease, and make it far easier for patients with M.E. to say what we already know in our hearts. We deserve biomedical treatment and we deserve respect.

This is very inspiring to me and I wish we could get some celebrities to take the challenge and post it like the ice bucket challenge (but how do we do this?!!!)

 

[OneWaySurvival]

This is very inspiring to me and I wish we could get some celebrities to take the challenge and post it like the ice bucket challenge (but how do we do this?!!!)

@Gingergrrl I agree this challenge will really take off once we get a celebrity or two to take the challenge and post their videos. There is a real possibility that somebody famous will be taking the KnoW M.E. challenge soon (in the next couple weeks I hope), but I don't want to say who until it happens.

Famous or not, I am very excited to see the response already. We passed the 300 likes milestone in the first week! The thing that sets this advocacy apart I think is that healthy and sick can both participate. It is easy to do and actually a little bit fun and entertaining to see the creative ways people are doing their videos. Some are heartwarming, some are funny, some are sobering. I really think this can work - and as awareness spreads - donations can start to come in for the M.E. cause.

 

[caledonia]

Frank Twisk reported these numbers last year:

Prevalence numbers for CFS are all over the place, but the following I think are pretty realistic.

The govt. uses one million for CFS. Leonard Jason uses .42%, which extrapolated to the 2014 population would be 1.3 million. ME (CCC) based on an average 6 studies is 65% of that. So something like 650,000 to 850,000. I have an upcoming blog post at MEadvocacy.org which covers some of this info.

According to Nacul, for ICC it would be something like 390,000 to 650,000.

 

[Gingergrrl]

@OneWaySurvival

@Gingergrrl I agree this challenge will really take off once we get a celebrity or two to take the challenge and post their videos. There is a real possibility that somebody famous will be taking the KnoW M.E. challenge soon (in the next couple weeks I hope), but I don't want to say who until it happens.

That would be great and yes, please do not say who b/c we don't want to jinx it! I have been thinking of some ideas too but since they are long shots, I am not going to say anything either.

Famous or not, I am very excited to see the response already. We passed the 300 likes milestone in the first week! The thing that sets this advocacy apart I think is that healthy and sick can both participate. It is easy to do and actually a little bit fun and entertaining to see the creative ways people are doing their videos. Some are heartwarming, some are funny, some are sobering. I really think this can work - and as awareness spreads - donations can start to come in for the M.E. cause.

That is great news and we are planning to make a video of the challenge too but it may take us a little while. I am not a member of Facebook but my husband is and I am trying to think of a unique idea for the video and how to do it.

 

[Gingergrrl]

@OneWaySurvival I was wondering how the new IOM name change to SEID changes the KnoW ME Challenge?!!!

 

[OneWaySurvival]

@OneWaySurvival I was wondering how the new IOM name change to SEID changes the KnoW ME Challenge?!!!

For now, not at all. Maybe a footnote? I am going to need a lot more convincing. Maybe a phone call from the SEID Czar? (see p245 of Beyond ME/CFS) This is just unreal.