I'm Walking Across Michigan.

[KGBmi]

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.

 

[Marg]

I did not vote, it is your decision. I am not sure of anything much anymore. I could never dream of doing such a thing, so good for you! How far is that? Do you sleep outside? I hope it is not as hot there as it is here, 107 yesterday, not sure about today. When do you go?

Are you doing it just yourself or are others involved?

Good luck and welcome.

 

[Dreambirdie]

My post disappeared...? could it be a conspiracy??? Here is the gist of it again.

I posted Khaly Castle's Petition To Disassociate From the CAA As Our Advocacy Representative, (signed by 622 people about a year and a half ago) so you could check the comments there to see why so many ME patients loathe the CAA. http://www.change.org/petitions/pet...ion-of-america-as-our-advocacy-representative

And also, here is a link to Mindy Kitei's blog post on Why Some Patients Have Had Enough
of the CAA http://www.cfscentral.com/2011/02/bad-company-22222.html

According to many, the CAA has NOT been a group that supports the needs of people with ME/CFS. I would have to agree.

 

[Esther12]

Sorry, but I have no idea which organisations for CFS are best. In an area where there's such uncertainty, it's normal for there to be a lot of disagreement over what response is best... I don't know if CAA is particularly bad beyond that.

I wanted to add a post of 'thanks' and 'best wishes' though, in advance of your journey.

Oh, and 'Welcome To The Forum'.

 

[Purple]

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.

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.

Perhaps while raising awareness, you need to stress it extra strongly that you are one of the few and very lucky patients who are actually able to accomplish such a feat while the great majority of your fellow sufferers could not even contemplate such a thing (as they may struggle even with the basics of daily living). More awareness needs to be brought to the plight of the most sick with this illness rather than the least sick. Many illnesses are known by how sick the sickest are while this is generally not the case with ME/CFS. And the ME/CFS patient population as a whole is *VERY* sick: think of all the completely bedbound, immobile or tubefed people (and children) who are not able to talk or lift a cup or watch TV or read - for years or decades and who have deteriorated after physical activity and/or exercise beyond their limits. I fear your planned walk - while you being a patient - will hinder progress in recognizing how sick ME/CFS patients really are (as a patient community as a whole) and therefore not bring good awareness to the illness.

Please take this as constructive feedback rather than negative criticism.

Since you are walking across Michigan, there are local orgs to you which you may consider and/or may like to contact: CFS Solutions of West Michigan and/or Dr Henry Heng's research programme at Wayne University and/or Dr Martin Lerner's Foundation in the Detroit area (perhaps other people can advise you on more orgs).

Other than that, welcome to the forum! And hopefully your planned walk will not lead to deterioration in your own health.

 

[Purple]

One more thing: if you do donate to CAA, please see if you can specify it's for research. Another place to consider donating to is Dr Derek Enlander's research initiative at Mount Sinai Hospital in New York. A patient has donated matching funds - so in effect you could double the amount you raise and know it will go to worthwhile research by a committed ME/CFS doctor who now co-operates with some high profile researchers (e.g. Dr Eric Schadt or Dr Ila Singh). (someone please correct me if the matching information is no longer current)

 

[*GG*]

Interesting. I have made donations to CAA, even thought they say some things that are not helpful to the patient community. My understanding is that they help get some good studies done, and then more money after that. Any solid results from all this? Not sure of any.

Perhaps you should/could split the proceeds to another org(s), although maybe people will not want to donate to the other org also. Catch 22.

How many miles will this be? How are you raising the money? Per mile?

GG

PS Be careful for your health! Does Michigan have it's own support group, like MA CFIDS?

PSS Welcome to the forum.

 

[kurt]

KGBmi, you must have not been sick long, or have a light case of CFS. I think for many of us, walking across Michigan would take several years. I totally support what you are trying to do though, and think donating to CAA would be a good choice, particularly if you specify that the money is to go to research. They have sponsored some important studies.

For those of us who are sicker, maybe we need some alternative to walking, to make a point. For me, I would need a recliner on wheels, with a motor, or something like that.

 

[Sushi]

And please be careful! If you have a "light" case of ME/CFS, this project could take you out of your "energy envelope" and push into into a deeper level of illness. Many of us have done that.

Best wishes,
Sushi

 

[Enid]

Wish I could do it but such a lovely thought KGB - do it !. (Sounds such a happy making trek if you can - is Michigan as beautiful as we hear here in the UK).

 

[KGBmi]

One more thing: if you do donate to CAA, please see if you can specify it's for research. Another place to consider donating to is Dr Derek Enlander's research initiative at Mount Sinai Hospital in New York. A patient has donated matching funds - so in effect you could double the amount you raise and know it will go to worthwhile research by a committed ME/CFS doctor who now co-operates with some high profile researchers (e.g. Dr Eric Schadt or Dr Ila Singh). (someone please correct me if the matching information is no longer current)

What are you referring to with this "matching donations" thing? I'm not clear on what you're saying exactly. I have also heard of the Mt. Sinai CFS Initiative, can't find anyway to donate online to it, nor is there any specific page that i've found for it. I found his office number online and may contact him that way.

I like/appreciate the suggestion about making specifications solely for research, and will see if that's a possibility.

Overall I think I understand the frustration (barely-contained rage may be more appropriate in some cases) with the CAA among the (online) patient community. I think some implications of collusion between it and the CDC are a little . . . crazy (I'm sorry, I can't think of a better/gentler word. No judgment, I'm bat-shit-insane myself). I'm still leaning towards the CAA. It may not be the best option, but I don't think there is a best option. Not one that will satisfy both victims and the general populace that is completely unaware of CFS. What narrative can be presented to them that will be satisfying but true to people like you and me with the disease? That's not a rhetorical question.

I would like to keep this discussion going. I have a 'pitch' - sort of a mission statement - that I've written, and would like to get peoples' feedback on it. I will PM it to certain members who've responded to this thread.

 

[Purple]

Here are two threads from this forum about the Mount Sinai hospital initiative - hope this helps!

http://forums.phoenixrising.me/index.php?threads/mount-sinai-me-cfs-center-how-to-help.13851/
http://forums.phoenixrising.me/inde...-to-the-mt-sinai-me-center.13081/#post-220868

 

[KGBmi]

KGBmi, you must have not been sick long, or have a light case of CFS. I think for many of us, walking across Michigan would take several years. I totally support what you are trying to do though, and think donating to CAA would be a good choice, particularly if you specify that the money is to go to research. They have sponsored some important studies.

For those of us who are sicker, maybe we need some alternative to walking, to make a point. For me, I would need a recliner on wheels, with a motor, or something like that.

That's insulting to me. Please don't feel a need to apologize. I have had CFS for 8 years (I'm 20), missed 2 years of high school because I was bed-ridden. It has derailed my life in a way I'm sure you can relate to. I am better now, though it still affects me.

I'm choosing to walk across Michigan because I'm a native and it's the sort of grand, romantic gesture that people pay attention to. I'm presenting an attractive narrative to people who don't even know CFS exists. Thank you for your suggestion though, I'm well aware that most people with CFS couldn't walk across a state (170 miles), and plan on highlighting the contrast between my relatively high (compared to other persons w/ CFS) physical capacity in the social media work that I do.

 

[snowathlete]

maybe some others who are well enough could 'join' you for a leg, even if it was only a mile.

i think its a good idea, personally. if you are well enough to do it. man i miss walking, swimming etc. if you can do it, then why not. sure you might decline, but thne you might not, and even if you do, at least you did it while you could. I know this isnt a common view. people talk so much about pacing and all that, and i agree it has its place, but for me, if i paced fully all the time then i woudl do nothing, ever, at all. it might be easier, slightly, but it would also be worse, in my own personal opinion.

Having said all that, its probably a good idea to have a plan about what to do if you start to decline, i.e. have somewhere to rest for a while. dont just push on through to get it done and set fairly soft targets for how far you walk how quick etc.
a blog and a map and photos and stuff like that is also well worth setting up so that people can track you and that will gain you more support and your cause more attention.

good luck.

 

[m1she11e]

KGB (and others who commented)

I have been sick for 30 years. Ive never paid attention to the notorious energy envelope I have always been warned about. I believe that if I had, I would have missed out on having any life at all. If I feel good I do what I can to enjoy that day or hour. A few years back I took a horrible dive and could not even walk across the grocery store. Im not sure why I declined so badly but it was not from pushing myself. I believe it was an environmental thing. Regardless, there was no way of pushing through that level of fatigue at all. Many told me once they got that bad, they never recovered to their previous "push through" level of CFS. It was terribly depressing!!!

I am now feeling better (still feel like crap but not house bound). I work almost full time again but it is not easy. I do understand there are many that have pushed and as a result, crashed very hard. This illness is different for us all though. I still believe we have to live when we can though and we all are constantly reminded that we could crash or decline. We really dont need a constant reminder!

I could walk across Michigan as my health is today. I would need breaks and to get plenty of sleep of course. I assume KGB isnt gonna jog across the state in a day!!

I say enjoy the energy when you have it or sit back and just have no life at all while you protect your envelope! Good luck to you KGB!!!

With that said....I have no idea who you should donate the money to. Good for you though for doing SOMETHING!! I am glad that you are able to do this! I look forward to hearing how it goes...

Michelle

 

[SpecialK82]

Good Luck KGB, thank you for doing something to publicize this illness. I hope it's a fabulous success!

 

[dmbaken]

Hi KGBmi

I don't think there would be any group that everybody here would agree would be a good recipient of the money. Just do it.

What you are doing sounds great. Take care of yourself.

Thanks for what you are doing.

Don

 

[Hope123]

If people have the physical ability or interest, they could do a 'virtual walk" anywhere. E.g. there are contests in some fitness clubs to "climb Mt. Everest" via the stairclimber. People do a bit each day, log it, and then track where they are "on the mountain." Similarly, same could be done for "walking across MI" or elsewhere. A little everyday may amount to a lot. Just don't overly push yourself.

Like everyone else here, I would caution you to be careful though. There are people who have recovered enough from this illness to climb mountains but who have relapsed, not neccesairily directly related to their climbing, years later.

[As a child, I once raised money for a MS charity by reading -- I was paid per page -- I read so much in the allotted time that my sponsors couldn't pay for it all!]

There are at least 2 orgs in MI I know of that may accept donations
: http://www.cfssolutions.org/
http://www.treatmentcenterforcfs.com/index.html

Like others here, I donate to a number of CFS charities, including the CFIDS Association, but I reduced my giving to them due to concerns about how they have operated. But to each their own.

 

[KGBmi]

Thank you all for your responses. After doing more research online and talking to certain people, I feel more comfortable with working with the CAA. I hope to have a website up soon. In the meantime, I thought maybe I could send a copy of my Mission Statement to some of you who've replied to this thread to get your thoughts? It's sort of my manifesto for the journey. Reply to this if you're interested in receiving it.

Another thing:

On my website, I would like to set up a page with a few personal stories - just short personal anecdotes and a picture for each person - from people who have been afflicted with CFS. I would like to get as diverse a selection of people as possible. In my encounters with other CFS patients and in meetings with a local advocacy group, I’ve found that almost all the people I’ve met have been white women aged 40-55. I have nothing against featuring some stories from people who come from that demographic, but I would like to have diversity on my page - I want to show people that CFS can and does affect people from all persuasions, ages, races, and walks of life. If you're interested in sharing your story, please reply to this message. I would love to take everyone's story, but I can’t without risking losing peoples’ (nowadays very short!) attention spans. I am particularly interested in anecdotes from people who are non-white, male, very ill, in recovery, below or above that 40-55 age range, and/or have something that might distinguish them in peoples' memory . . . like “I was about to get married/sign with the Dallas Cowboys/expand my multi-million dollar business, but then I got CFS.”

Thanks, and I look forward to hearing from people! Just please post a little info about yourself if you’re interested and believe you represent the diversity of the ME/CFS community! Even if you are female, white, and between the ages of 40-55, feel free to post if you are so compelled - please don't feel that I don't recognize your suffering, or that you are a legitimate part of the PWC community.​

 

[valentinelynx]

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.