I'm Walking Across Michigan.

[SOC]

I would compare it to a Diabetic who wanting to raise awareness for his illness, enters a cake eating contest. For a Diabetic to eat cakes filled with sugar is akin to a Chronic Fatigue Syndrome patient walking across a State.

Good analogy, Neilk. Even if the diabetic had his symptoms under control, I doubt other patients would encourage him to enter a cake-eating contest, and would probably fervently advise against it out of concern for the patient's health.

 

[Andrew]

I used to support and defend CAA. Now I would not give them a single penny of support. They accepted money from the CDC to promote the CDC view of CFS. This shows where their priorities are. And more recently, with their blood sample bank, they dismiss the importance of tracking which definition of CFS was used to gather samples.

If you want to give to an organization, try PANDORA



http://www.p-a-n-d-o-r-a.org/

 

[Whit]

The cake eating diabetic analogy is a good one.

You have to realize how simple the media likes things. A pr stunt like this will be reduced to a simple image, as I said before. Awareness about CFS isn't going to come from an image of someone walking with CFS. Just like no one will better understand diabetes if they picture someone with diabetes eating cake.

Most people won't even read a mission statement at all. They will just register the image.

Look at marketing. Cigarrettes aren't popular because of the backstory. In fact, they are popular despite the very negative backstory. They're popular because of the simple image of sexy, classy, well respected people smoking. That's it.

We need images of what the majority of people with CFS can't do. Not images of what 1% of people with CFS can do.

also, I hate to say it, but if you can walk across the state, you may not even have CFS. There is no diagnosis. I think you have to be very careful about identifying yourself with people who are much sicker when we know so little about the illness.

 

[justinreilly]

I agree with Mark and the others who expressed similar concerns that this will probably send an unhelpful message.

Id like to ask a favor, that if you do this walk that you refer to the disease as ME or ME/CFS.

Do you want to walk across the state because that would be fun or enjoyable? If not, and you're doing it because it is a challenge, then I would suggest that you do some other advocacy instead, lobbying your members of congress, etc., or the idea suggested here of going around and helping pwME who really could use some help with physical work like cleaning their house. Pls note, I,m not telling you what to do, just making a suggestion.

I hope all this hopefully constructive feedback isn't a sign to you that you should definitely do your plan since if the plan weren't criticized a lot, it wouldn't be something worth doing. : )

 

[KGBmi]

Thank you all for the feedback. Though I am impressed and encouraged by the passion of your responses, nothing that has been said here has really swayed me significantly. I've made the decision to keep going with the walk. I have no intention to argue with any of you. I believe there is some validity to the point being made - expressed most eloquently (and constructively) by Mark - that the media's interpretation and construction of my walk may be counter-productive in that it may promote the narrative that sufferers must simply work harder, 'stop being so lazy,' etc. Not enough validity to change my mind, for several reasons that I won't go in to (my apologies), but validity nonetheless; and so I'm wondering, in my dealings with the media, if you have any suggestions as to how I should present myself, what points I should make, etc.? My Mission Statement is not something that I will be handing out to people - it will be on my site and is simply a description of my walk and the motivations behind it.

Digression re: 'Fighting vs. Fighting Through Something:' When I was a freshman in High School, I dropped out of school because of the symptoms I was experiencing. I was bed-ridden for most of that year, and partially bed-ridden for the next. I was diagnosed at the Cleveland Clinic that second year. I tried fighting through it, ignoring it, exercising like a healthy person; it made things worse. I tried a lot of things. I began to write, I began to write all the time; about myself, life, books, people, music. I didn't want to understand and live my life solely in relation to my status as a sick person. Writing was an internal act of defiance, of fighting - I knew that it would not make me healthy. That's not why I did it. I did it because I wanted to choose to live my life - to the fullest extent that I could - independent of my idea of myself as a 'sick person.' This attitude has kept me sane. In many personal ways, this walk is like writing was for me. I couldn't have walked in the past, but I can now, and I will.

Another thing: justinreilly, I hear what you're saying with respect to use of ME/CFS or ME vs. just CFS. CFS is an insulting, ridiculous name. It is also - in the US - the most commonly used term to refer to this disease. I don't like that, but I can't change the fact of it overnight. Think of the NAACP. I'll be referring to the walk as the Walk Across Michigan for CFS, but will try to make sure that I refer to the disease in all my other content as ME/CFS.

 

[peggy-sue]

I'd far rather you simply referred to CFS.

I really don't want to see the ME moniker tied to this public effort you're making.
In fact, I'd really rather the whole thing wasn't public.

 

[Andrew]

Well, considering that you are going ahead with this, I have a couple suggestions. One point you can make to the press is that with most illnesses, people are seen as heroic for all they accomplish despite being sick. But with ME/CFS, our accomplishments are used to dismiss us. They are used to discredit us. Hopefully, this will help fend of their knee jerk reaction that you can't possibly be sick, considering what you are doing.

And in regard to this, you might mention that people also dismiss us because we don't look sick. And if it helps at all, you could use my experience as an example. I didn't look sick the day I was diagnosed with cancer. I didn't look sick the day I was diagnosed with COPD. I didn't look sick the day I was diagnosed with arthritis. And I still don't look sick. But with ME/CFS people use my appearance to tell me I'm not sick.

Anyway, I hope this doesn't backfire on you. And considering that you have ME/CFS, I hope you realize that this could send you into a health crash that could last for years. I went through a physically stressful period three years ago, and I'm still not back to where I was before the crash. Of course, if you end up unable to stand up, it would make great press. But it's really not worth it.

 

[Nielk]

Hello, my name is Koerner, and I am going to walk across the state of Michigan. I am going to do this because I have had ME/CFS for 8 years, and I would like to raise awareness of and research money for this disease. I plan on funneling donations to the CFIDS Association of America. I know (i.e. I have read some angry posts online in the past few days indicating that) there is some irritation/distrust/frustration with the CAA. I have chosen the CAA because 1) it's the largest, most prominent organization of its kind in the country 2) it is the only CFS-related charity that is partnered with the online fundraising/social media site Razoo 3) I honestly don't expect to "change the world" (e.g. cure CFS, make my or your lives significantly, qualitatively better or easier) with this walk, but believe it could have a lot of value in raising awareness and as a (personally and perhaps publicly) symbolic action.

Please respond with your thoughts, criticism, advice, etc. This is my first post on this forum.

KGBmi,

You started out asking for our advice.

When we ask for advice, we are usually looking for an accomplice.

Saul Bellow

It is clear now that you had made up your mind from the initial get go. I would just ask of you to think deeply into yourself and judge for whose benefit really are you doing this?

 

[justinreilly]

Thank you all for the feedback. Though I am impressed and encouraged by the passion of your responses, nothing that has been said here has really swayed me significantly. I've made the decision to keep going with the walk. I have no intention to argue with any of you. I believe there is some validity to the point being made - expressed most eloquently (and constructively) by Mark - that the media's interpretation and construction of my walk may be counter-productive in that it may promote the narrative that sufferers must simply work harder, 'stop being so lazy,' etc. Not enough validity to change my mind, for several reasons that I won't go in to (my apologies), but validity nonetheless; and so I'm wondering, in my dealings with the media, if you have any suggestions as to how I should present myself, what points I should make, etc.? My Mission Statement is not something that I will be handing out to people - it will be on my site and is simply a description of my walk and the motivations behind it.

Digression re: 'Fighting vs. Fighting Through Something:' When I was a freshman in High School, I dropped out of school because of the symptoms I was experiencing. I was bed-ridden for most of that year, and partially bed-ridden for the next. I was diagnosed at the Cleveland Clinic that second year. I tried fighting through it, ignoring it, exercising like a healthy person; it made things worse. I tried a lot of things. I began to write, I began to write all the time; about myself, life, books, people, music. I didn't want to understand and live my life solely in relation to my status as a sick person. Writing was an internal act of defiance, of fighting - I knew that it would not make me healthy. That's not why I did it. I did it because I wanted to choose to live my life - to the fullest extent that I could - independent of my idea of myself as a 'sick person.' This attitude has kept me sane. In many personal ways, this walk is like writing was for me. I couldn't have walked in the past, but I can now, and I will.

Another thing: justinreilly, I hear what you're saying with respect to use of ME/CFS or ME vs. just CFS. CFS is an insulting, ridiculous name. It is also - in the US - the most commonly used term to refer to this disease. I don't like that, but I can't change the fact of it overnight. Think of the NAACP. I'll be referring to the walk as the Walk Across Michigan for CFS, but will try to make sure that I refer to the disease in all my other content as ME/CFS.

I'm not sure why NAACP is still called that, it seems silly to me. In any event, it's not as harmful as us calling ME by the name "CFS" since no one is going to start calling black people "colored people.". But by using "CFS" you will be perpetuating that harmful meme. Many orgs have started using "ME" and that is ONLY because we patients have started using it. Of course I don't expect you to change things overnight, but if we don't start taking more constructive action including using ME and not supporting CAA, things will NEVER get better for us, at least in our lifetimes.

 

[Wayne]

and so I'm wondering, in my dealings with the media, if you have any suggestions as to how I should present myself, what points I should make, etc.?

Hi KGBmi,

Well, I'm just going to start rambling a bit here regarding your dealing with the media, and don't anticipate putting this into a concise format. First, I think you should be prepared to answer some questions you'll likely get, such as, 1) Do you have a steady job? 2) Are you going to school? 3) How do you support yourself? 4) Are you on disability? Depending on your answers, they may then probe a little deeper. Who are these organization(s) you're advocating that be supported with financial donations? If you're able to be out here advocating for donations, how is the public to know this isn't some kind of scam? (My own take is that people would be suspicious of a seemingly able-bodied person soliciting donations for CFS).

Perhaps most importantly on my part, I would like you to inform the media that a significant percentage of people who have ME/CFS would have preferred you didn't do this kind of public domain initiative on their behalf, feeling it would send a damagingly wrong impression about the serious nature of this neuro-immune disorder ridiculously known as CFS. Regarding this last suggestion, I was wondering if you've considered starting another thread with a poll, asking PR members whether they think your trip across Michigan on our behalf is a good idea, and/or whether they thought it would benefit us or harm us. Perhaps give about four different answers, such as 1) favor, 2) strongly favor, 3) opposed, 4) adamantly opposed.

To wrap up, I'll make a bit of an analogy based on my own situation. I've now reached the point where I can hardly mow our lawn anymore, even though it's a relatively small one (takes about 30 minutes total). So I'm now breaking it up. About a week ago, I went out and stopped after mowing about a third of it, rested a couple of days, did another third, and finished up about 3-4 days later. It's not difficult for me to imagine that if somebody had looked out their window and saw me mowing the lawn, and were aware I was collecting disability, they might be sorely tempted to get out their cell phone and start video-taping me and report me for scamming the system. Little would they know that it generally takes several hours to get my neurological system to start settling down after such an effort, that my sleep is likely going to be significantly impacted during the night, that I'll wake up with a nasty headache and be utterly exhausted, and that I'll experience exacerbated vertigo for another 1-2 days (and more). I could explain this all to them, but they would most likely feel they've already sized things up. As they say, a picture is worth a thousand words.

Regards, Wayne

 

[SOC]

I agree with Wayne about preparing in advance some answers to questions that are likely to be asked regarding your ability to do this walk while suffering from CFS to the extent that you cannot work or go to school.

This statement of yours needs some modifying, IMO, if you do not wish to give an entirely wrong impression of people with ME/CFS:

That's not why I did it. I did it because I wanted to choose to live my life - to the fullest extent that I could - independent of my idea of myself as a 'sick person.' This attitude has kept me sane. In many personal ways, this walk is like writing was for me. I couldn't have walked in the past, but I can now, and I will.

The idea that you are now walking because you "choose to live your life" can easily be interpreted to mean that most people with ME/CFS choose not to live their lives to the fullest extent they can. You'll have to watch the spin on that very carefully.

Most of us do live our lives as fully as we can, but we engage in activities that meet our needs -- working, for example -- and don't make us any less functional than we already are. I choose to work part-time at a job that is very limited in it's physical requirements in an extremely supportive environment because I think helping to support myself is more important than "grand romantic gestures".

I, for one, would prefer that you use the name "CFS" in your publicity efforts. ME/CFS as defined by the CCC and ME as defined by the ICC both require PEM/PENE, which would prevent you from doing this walk, so you are not representing patients who have ME/CFS (or ME).

I think you need to get a great deal more educated about this illness before you claim to represent the patient population. You might start by reading the CCC and ICC and follow up with some interviews with some of the top specialists like Dr Petersen, Dr Klimas, Dr Enlander, etc. You might even ask them what they think of your "advocacy" activity.

You have a definite talent for writing that could be used to great effect for advocacy on behalf of people with ME/CFS. It seems like that would be a much better application of your skills and abilities than a counter-productive physical activity for the purpose of making a "show". However, it is your life and you will do with it as you see fit.

I hope you can achieve something positive for yourself and the CFS community with this activity and that you don't have a serious relapse as a result.

 

[Nielk]

I just came across Koerner's "walk across Michigan for CFS" website.

http://www.wamcfs.org/index.html

He has so far walked 60 miles and raised $1,173 for CAA.

 

[Esther12]

I wish him all the best with everything.

 

[justinreilly]

I skimmed through it and he did mention most of the points we made to him, so at least that's good.