I'm Walking Across Michigan.

[justinreilly]

Hi, KGBmi,

welcome to PR. thanks so much for raising funds for ME research!!

I Very strongly recommend against donating to CAA, even for research. They do take salaries for the officers and staff and overhead out of the research budget, so any donations for research, would, I believe also support CAA. (There may be an option to avoid this and put all funds directly into a grant pool, you'd need to ask, of course)

And even if this werent so, adding to CAAs research budget increases their power and influence, which is sub-optimal to say the least.

I strongly recommend Dr. Enlander's ME/CFS Center at Mt Sinai. (disclosure: I am his patient) Equally helpful would be Dr. Peterson's Simmaron project where donations have a five-times multiplying effect!

A second best, IMO, would be Dr. montoya's center at stanford. All These centers would do a much better job of meeting the criteria you mentioned of satisfying patients as well as the mainstream.

pls feel free to PM me of course and best luck in fundraising!

 

[Wayne]

Walking across a state to raise awareness of an illness so disabling that many sufferers (even moderate cases!) very quickly and uniquely lose the ability to walk any meaningful distances while at the same time facing frequent doubts about their physical inability to walk or do anything physically strenuous (or indeed whether they are ill or not) does not strike me as a good way of raising awareness. Severely affected ME/CFS sufferers often cannot walk as far as their front door (or the bathroom) while a longer walk would likely lead to a great and possibly irreversible deterioration in their health. Additionally, PEM limits ME/CFS's sufferers to do much physical activity beyond their (often very low) thresholds for any sustained periods of time. --- Please take this as constructive feedback rather than negative criticism. --- Other than that, welcome to the forum! And hopefully your planned walk will not lead to deterioration in your own health.

Hi Purple,

Thanks for articulating my own sentiments so well.

Koerner, I commend you for wanting to raise awareness of ME/CFS, but I have to believe that a walk across an entire state is NOT the way to do it. How many healthy people could accomplish such a feat, much less someone who claims to have an extremely disabling disease? And if you did manage to do this, it really wouldn't be at all representative of what most pwCFS are able to accomplish. If you were able to garner any publicity at all, I would have to believe it would be mostly negative, with many observers becoming extremely skeptical about the validity of the disease. Again, I appreciate your desire to raise awareness and help us all. But I would encourage you to find a different way of approaching it.

Best Regards, Wayne

 

[SOC]

Hi Purple,

Thanks for articulating my own sentiments so well.

Koerner, I commend you for wanting to raise awareness of ME/CFS, but I have to believe that a walk across an entire state is NOT the way to do it. How many healthy people could accomplish such a feat, much less someone who claims to have an extremely disabling disease? And if you did manage to do this, it really wouldn't be at all representative of what most pwCFS are able to accomplish. If you were able to garner any publicity at all, I would have to believe it would
be mostly negative, with many observers becoming extremely skeptical about the validity of the disease. Again, I appreciate your desire to raise awareness and help us all. But I would encourage you to find a different way of approaching it.

Best Regards, Wayne

KGBmi
I want to commend KGBmi for his efforts to raise funds for and awareness of ME/CFS. My daughter and her bf ran into KGBmi at her ME/CFS specialist's office and they found him enthusiastic and sincere.

At the same time, I have a little concern about the "awareness" issue. It did not help my daughter's bf understand her limitations having spent time talking to this young man in the doctor's waiting room. IMO, KGBmi needs to be extremely careful in how he presents ME/CFS and PWME or there are going to be more people who do not understand the severe effects of ME/CFS and that most PWME do not recover to the degree he has.

I suggest that KGBmi keep a useful story or analogy at the front of his awareness efforts that explains that while he can now walk across Michigan, there are very few who will ever be able to do anything close (until we get much better treatment than we currently have). Perhaps Lance Armstrong and cancer patients would be a good comparison...? Or maybe something like, "I'm one of the 0.5.% (or whatever the percentage is) of PWME who recover enough to be able to do something like this, which is why I want to do this -- for the many PWME who are bedbound and housebound, blah, blah, blah" (You get the idea.)

 

[KGBmi]

Hi Purple,

Thanks for articulating my own sentiments so well.

Koerner, I commend you for wanting to raise awareness of ME/CFS, but I have to believe that a walk across an entire state is NOT the way to do it. How many healthy people could accomplish such a feat, much less someone who claims to have an extremely disabling disease? And if you did manage to do this, it really wouldn't be at all representative of what most pwCFS are able to accomplish. If you were able to garner any publicity at all, I would have to believe it would be mostly negative, with many observers becoming extremely skeptical about the validity of the disease. Again, I appreciate your desire to raise awareness and help us all. But I would encourage you to find a different way of approaching it.

Best Regards, Wayne

Thanks Wayne, I can understand your concern. I'm very thankful that I've gotten to the point I have physically. To be fair, I will be walking 3-5 miles a day, and expect the walk to take me over a month. I do sort of worry that I'm putting too much on my plate, but I would rather try and fail than do nothing at all. I am going to do the walk; I've no doubt about this. I am curious what you might suggest besides this walk, feel free to suggest whatever.

In my encounters with the media, I recognize the need to tailor my rhetoric, and to emphasize the fact that people with more severe cases of CFS couldn't do what I'm going to. I'm going to send you a private message (start a conversation or whatever) consisting of my mission statement for the walk. please read it and tell me what you think, particularly with respect to how i can best represent and advocate for persons with the most debilitating cases of CFS. Look forward to hearing from you!

 

[KGBmi]

KGBmi
I want to commend KGBmi for his efforts to raise funds for and awareness of ME/CFS. My daughter and her bf ran into KGBmi at her ME/CFS specialist's office and they found him enthusiastic and sincere.

At the same time, I have a little concern about the "awareness" issue. It did not help my daughter's bf understand her limitations having spent time talking to this young man in the doctor's waiting room. IMO, KGBmi needs to be extremely careful in how he presents ME/CFS and PWME or there are going to be more people who do not understand the severe effects of ME/CFS and that most PWME do not recover to the degree he has.

I suggest that KGBmi keep a useful story or analogy at the front of his awareness efforts that explains that while he can now walk across Michigan, there are very few who will ever be able to do anything close (until we get much better treatment than we currently have). Perhaps Lance Armstrong and cancer patients would be a good comparison...? Or maybe something like, "I'm one of the 0.5.% (or whatever the percentage is) of PWME who recover enough to be able to do something like this, which is why I want to do this -- for the many PWME who are bedbound and housebound, blah, blah, blah" (You get the idea.)

Small world. You spelled handsome wrong. I appreciate the feedback, these are legitimate concerns. Obviously in the waiting room, my intent was to scout out personal stories for my site, not to fully go into the walk and my reasons for it.

I'm not quite sure what you mean by 'a useful story or analogy,' and I don't know where you're going with the Lance Armstrong thing.

I'm going to send you a private message consisting of my mission statement for the walk. please read it and tell me what you think, particularly with respect to how i can best represent and advocate for persons with the most debilitating cases of CFS. Give my regards to your daughter and her boyfriend.

 

[SOC]

Small world. You spelled handsome wrong. I appreciate the feedback, these are legitimate concerns. Obviously in the waiting room, my intent was to scout out personal stories for my site, not to fully go into the walk and my reasons for it.

I'm not quite sure what you mean by 'a useful story or analogy,' and I don't know where you're going with the Lance Armstrong thing.

I'm going to send you a private message consisting of my mission statement for the walk. please read it and tell me what you think, particularly with respect to how i can best represent and advocate for persons with the most debilitating cases of CFS. Give my regards to your daughter and her boyfriend.

Oh yeah, I forgot "handsome".

The idea for a story or analogy is simply to make it clear that you are in a tiny minority of PWME. eg Lance Armstrong can win the Tour de France multiple times after his cancer treatment, but that does not mean most cancer patients can hope to do the same. Similarly, most PWME can't walk across the state. Perhaps not the best example, but I imagine you get the idea.

My daughter is currently in remission, but even at her worst was not as ill as the many patients who are bedbound. Her story is dramatic, but not typical because most of us haven't been able to achieve remission.

If you can get your message clear enough to advocate for the most disabled, that would be terrific. If you are only planning to walk 3-5 miles a day, you might be able to have some PWME in wheelchairs to join you for short parts of your trip. Parts that are receiving publicity would be best. We might even get daughter and bf to join you, especially if you are planning to go through Ann Arbor.

I look forward to your PM with your mission statement.

 

[KGBmi]

Well, I was 31 when I got sick. Now I'm 50. Female, yes. White, yes. About to go to medical school when got ill. Went anyway. Had to take extra 2 years to finish. Sorry, doesn't quite fit your profile, but probably a lot of your 40-55 demographic were a lot younger when they got ill. It takes a while to hook up with resources, or even (as in my case) to figure out what is wrong with you.

Thanks for your reply, sorry it's taken so long for me to get back to you. I'm definitely interested in your story - the fact that you went to school anyway is inspiring and would be a good story for people to read. Please "Start a Conversation" with me with a little more info!

 

[KGBmi]

To Enid, m1she11e, SpecialK82, and dmbaken: I would like to thank you all in particular for your support, but more than that, I'd like to thank you for your optimism - something I haven't seen all that much of in my interactions on this forum. I've received a few discouraging responses/reactions from people online and offline (mostly offline, I'm not trying to trash this forum) about this walk. I figure if I wasn't receiving any criticism/verbal attacks, that'd be a good sign that what I was doing wasn't all that worthwhile anyway.

 

[SOC]

KGBmi
I'll give you more detail about your mission statement in a PM when I'm less mentally tired, but I want to make this statement publicly:

I am very concerned about your health in undertaking this trip while you are still unable to work or go to school. I don't think any of our top ME/CFS specialists would recommend that kind of activity at this stage of your illness. I think it's particularly unsafe if you're not under the care of an ME/CFS specialist. You could easily drive yourself back to a bedbound condition. My daughter is healthier than you are at this point and neither I, nor her doctors, would support her walking across the state at this time. No one wants to see you get sicker through this venture.

Your mission statement is mostly very good, though. I continue to commend your desire to do something positive for the ME/CFS community.

 

[adreno]

I agree with others here that walking across a state to gain awareness of a disabling disease is unlikely to be productive. By accomplishing such a feat you are actually showing that ME is not as serious as other patients claim. I would even doubt that someone who can walk 3-5 miles every day can still be diagnosed as having ME. And it won't help telling the media that most patients couldn't do this. People believe what you do, not what you say. So if you can do this, they will say that other ME patients should be able to do this as well, and that they are likely exaggerating their problems. It will also be a victory for the psychobabblers. It will show that even someone who has a disabling, chronic disease can overcome it, if they set their mind to it. The media loves these sort of stories. No one wants to hear about the chronically disabled who never gets better. I really think it is a bad idea. If you want to make a personal goal of walking across the state, do it. But I wouldn't make a media spectacle of it.

 

[SOC]

Having read the KGBmi's mission statement, I can no longer support this fund-raising activity because of
1) my perception of the risk to KGBmi's health
2) the message that is being sent about ME/CFS and patients' ability to "fight through" our obstacles

 

[KGBmi]

Did one of my posts from last night disappear?

On the off-chance that I said something in it that was moderated, I'll summarize it with less detail, but perhaps more bluntness, than I originally used:

Having read the KGBmi's mission statement, I can no longer support this fund-raising activity because of
1) my perception of the risk to KGBmi's health
2) the message that is being sent about ME/CFS and patients' ability to "fight through" our obstacles

Your post appears to be gone, but I read it in my email. I have had CFS for eight years; I know my body. Those eight years have taught me when I am doing too much, and I am very willing to listen to myself (over anyone else, really). I reserve the right to begin this walk and quit after 24 hours. I do appreciate your concern though. And to your second point: there is an enormous semantic difference between "fighting through" and "fighting," and I advocate the latter.

 

[peggy-sue]

I appreciate the thought, but have to add my own reservations.
I (personally) get absolutely furious when folk do great athletic, physical stuff such as this for ME.
It rubs it in that I can't do it any more, it's just completely inappropriate.
Get somebody to push you across the state on a bed, rather than walk it yourself.
Make a point about the damned disease.
I really think something like this, done by a sufferer, only minimises and trivialises the disease and it supports the "malingerer" idea.

 

[KGBmi]

I agree with others here that walking across a state to gain awareness of a disabling disease is unlikely to be productive. By accomplishing such a feat you are actually showing that ME is not as serious as other patients claim. I would even doubt that someone who can walk 3-5 miles every day can still be diagnosed as having ME. And it won't help saying to the media that most patients couldn't do this. People believe what you do, not what you say. So if you can do this, they will say that other ME patients should be able to do this as well, and that they are likely exaggerating their problems. It will also be a victory for the psychobabblers. It will show that even someone who has a disabling, chronic disease can overcome it, if they set their mind to it. The media loves these sort of stories. No one wants to hear about the chronically disabled who never gets better. I really think it is a bad idea. If you want to make a personal goal of walking across the state, do it. But I wouldn't make a media spectacle about it.

I would like to understand the context of your statement more, adreno. Do you count yourself among the "chronically disabled who never gets [sic] better?" Your post has been helpful to me in considering how I am going to frame the narrative of my experience with CFS to the media, and has given me some things to think about. I appreciate the criticism. If you're interested in reading and giving me feedback on my Mission Statement, I've sent it to you in a message.

 

[Dainty]

I remember reading a comment pertaining to CFS from an outsider's perspective. The blog post itself was something generic about overcoming obstacles, and one person commented referencing a professional athlete who currently "has" CFS, I think they had to take a break for a while but came back. So the point the commenter was making is that people with CFS can become professional athletes*.

From the way I've observed the media works, they're more interested in sensationalism than in the truth. You may personally emphasize the truth, but they'll only report on the most interesting bits and pieces, presenting a dumbed-down version of what they feel the highlights are, and that's what everyone is going to remember. It doesn't even matter if you have the right information on your website; your intent is to use the media for awareness, yes? Right now it's "cool" to ridicule people with CFS as having a fake disease, so the reporters' slant is predictable - you're setting the stage to give them a good laugh at the entire community's expense.

I don't doubt your sincerity of your efforts, but it doesn't shake out in my mind as having a reasonable chance of accomplishing the desired effect.

*I do think it'd be amazingly wonderful if someone with CFS recovered so well as to be an athlete. The point here is that what sticks in people's minds is "CFS + athlete" not "CFS is a serious illness".

 

[Purple]

What Dainty said above is very astute and sadly, realistic in my opinion. Especially the bit about the athletes... as I mentioned before, our illness needs to become known by how sick the sickest are.

 

[SOC]

Your post appears to be gone, but I read it in my email. I have had CFS for eight years; I know my body. Those eight years have taught me when I am doing too much, and I am very willing to listen to myself (over anyone else, really). I reserve the right to begin this walk and quit after 24 hours. I do appreciate your concern though. And to your second point: there is an enormous semantic difference between "fighting through" and "fighting," and I advocate the latter.

It's good that you reserve the right to quit if you find you are unable to continue this walk.

However long 8 years feels like to a 20yo, it does not make a large reservoir of ME/CFS knowledge. Many PWME feel better after some years, push themselves physically, and then find themselves in a worse condition than before. Longer term patients and our top ME/CFS docs could give you more insight on this topic.

I stand by my statement that if you are too ill to work or go to school, I am not comfortable supporting you in undertaking a 30-day walk-a-thon.

Whether you do this walk or not is entirely up to you, but as the parent of a 20yo who has also been sick for 8 years, and is in better health than you currently, I cannot see my way to encouraging this activity. I applaud your desire to do something for the ME/CFS community, but I suggest that there are more appropriate advocacy activities.

I fully understand the semantic difference between "fighting" and "fighting through". I contend, however, that the vast majority of the population will not get that distinction from your mission statement or your walk. You need to consider what message the general population is going to take away from your cross-state walk. What they "hear" may not be the message you are trying to send, but it still gets across.

I ask some personal questions that you are in no way obliged to answer if you feel you do not want to share this information. I ask only because it might help some of us understand where you are coming from and how we might either support your walk, or suggest advocacy activities that seem more appropriate.

1. Do you have (or have you had) PEM/PENE? I'm not talking about extreme fatigue; I'm referring to a physical relapse or increase in symptoms following "normal" physical exertion.

Pushing your self physically every day for a month or two seems very unwise if you do have PEM/PENE. If you have not had PEM/PENE, it might be a different issue.

2. If you can walk 3-5 miles daily for 30-60 days, what are the symptoms that keep you from working or going to school? The general public is going to ask that question, you can be sure.

Might there be an advocacy activity that would allow you to continue to improve so that you can get past the symptoms that prevent you from working, rather than one that could easily make you even less able to work or go to school? It's not going to be a good pr statement that PWME can't work, but can spend a month or two walking across the state.

If you have recovered sufficiently to work or go to school, and otherwise live a normal social life, and you can undertake this walk, then you could put across a different message, but you will have to be very careful to make it clear that spontaneous recovery from bedbound to work + cross-state walk is extremely rare in ME/CFS, and nearly non-existent in people much older than you.

Whether or not you do this walk is entirely up to you, of course. Ultimately, only you know what is right for you. If you want the support of many fellow patients, however, you may need to rethink your choice of activities or your message.

 

[Wayne]

From the way I've observed the media works, they're more interested in sensationalism than in the truth. You may personally emphasize the truth, but they'll only report on the most interesting bits and pieces, presenting a dumbed-down version of what they feel the highlights are, and that's what everyone is going to remember. It doesn't even matter if you have the right information on your website; your intent is to use the media for awareness, yes? Right now it's "cool" to ridicule people with CFS as having a fake disease, so the reporters' slant is predictable - you're setting the stage to give them a good laugh at the entire community's expense.

Hi Dainty,

I share your observations regarding the media. It's good to always keep in mind they are quite often more interested in sensationalism than the truth, because that's what sells and makes them money. One form of sensationalism is to get viewers/readers a bit riled up about something. I believe the media is well aware that chronic fatigue is something a lot of people think they have, but feel they just pull themselves up by the bootstraps and get on with life any how. As such, they tend to view people with the debilitating neuro-immune disorder ridiculously labeled as CFS as malingerers (thanks in large part to the CDC and William Reeves).

I can't help but think that many who see somebody with CFS able to walk a long distance will only reinforce this stereotype. Temporary remission is not something they've heard of before, and will most likely dismiss without delay. I've seen several instances where our naysayers will point out that pwCFS who post online is also proof they're not nearly so disabled as they claim to be. It seems any capability we display, whether posting online, or even going out into the world for brief periods at a time, is always fraught with the likelihood of misperceptions. "Gee, you look good", is an often heard refrain.

I may be rambling a bit, but Koerner, no matter what you decide, please be prepared for the media. Be ready to repeat and stress certain important points over and over with them. Perhaps they'll get it, and report accordingly. But unfortunately, I think it's highly likely they'll get it wrong. On the other hand, I could be wrong, and a walk across state as you envision could be a huge success. Maybe times have changed. Perhaps just an old-timer rambling here.

Best, Wayne

 

[Sushi]

I remember reading a comment pertaining to CFS from an outsider's perspective. The blog post itself was something generic about overcoming obstacles, and one person commented referencing a professional athlete who currently "has" CFS, I think they had to take a break for a while but came back. So the point the commenter was making is that people with CFS can become professional athletes*.

From the way I've observed the media works, they're more interested in sensationalism than in the truth. You may personally emphasize the truth, but they'll only report on the most interesting bits and pieces, presenting a dumbed-down version of what they feel the highlights are, and that's what everyone is going to remember. It doesn't even matter if you have the right information on your website; your intent is to use the media for awareness, yes? Right now it's "cool" to ridicule people with CFS as having a fake disease, so the reporters' slant is predictable - you're setting the stage to give them a good laugh at the entire community's expense.

I don't doubt your sincerity of your efforts, but it doesn't shake out in my mind as having a reasonable chance of accomplishing the desired effect.

*I do think it'd be amazingly wonderful if someone with CFS recovered so well as to be an athlete. The point here is that what sticks in people's minds is "CFS + athlete" not "CFS is a serious illness".

I've unfortunately worked for a newspaper, and I'm afraid Dainty is right--they generally manipulate the story to fit certain paradigms that "sell." For instance, they would jump on a story about someone who died while walking across a state to raise awareness, and they might jump (less enthusiastically) on a soppy (they would make it soppy!) story about someone defying the odds and overcoming physical obstacles.

If you get media attention, ask to read and have the right to correct anything they write, before it is published.

On another note (this is support not criticism!) the effects of exercise are cumulative and I have crashed many times by doing a "reasonable" amount of physical activity day after day. I could handle it on one day, but daily repetition didn't allow me to recover. Please take these comments as concern for you!

Best wishes,
Sushi

 

[warriorseekspeace]

Hi, KGBmi. I am so ill today from having gone to the dental school just for an examination, and then sitting up some time, rather than lying flat all day, that I can almost not gather the strength nor cognitive clarity to reply. I was shocked when I heard your plan, but have been too ill to reply. BTW, I have been ill close to 25 yrs. Although there have been times in the first decade when I was only moderately ill, and was able even sometimes to work part time, the progression of this illness has robbed me of my entire life and all my dreams.
I am so relieved to find some voices of reason above.
If you do this walk, you certainly are not representing me! I am sick of being told from every direction that if I can triumph over illness, I am worth something. If not, it must be my own fault.
I want to quote some of the above statements, for emphasis, but it is too many steps for me to go back to get the names of who said them. I am so overdue to be lying flat again, in the dark, quiet room with earplugs and eyemask.

So if you can do this, they will say that other ME patients should be able to do this as well, and that they are likely exaggerating their problems. It will also be a victory for the psychobabblers. It will show that even someone who has a disabling, chronic disease can overcome it, if they set their mind to it. The media loves these sort of stories. No one wants to hear about the chronically disabled who never gets better.

It's not going to be a good pr statement that PWME can't work, but can spend a month or two walking across the state.

I wish I could state more clearly. I feel so strongly that you need to find a more appropriate way to help the community, but I do not get adequate blood flow to my brain. I have lost my career. If you only knew.
Could you start a group which will go around your region cleaning houses for people who cannot leave bed, and then do PR about that, ro something.