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I'm Walking Across Michigan.

Discussion in 'Action Alerts and Advocacy' started by KGBmi, Jul 24, 2012.

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Is the CAA a good choice for facilitating monetary donations towards?

  1. Yeah, man.

    18.2%
  2. NO IT'S REALLY BAD

    81.8%
  1. m1she11e

    m1she11e Senior Member

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    Its really so sad that this community has to always worry about the media thinking we actually are well and choose to "pretend" we are sick. I understand that many are concerned about how it will look for a person who is dealing with an illness that can cause extreme fatigue and weakness to go out an accomplish a physical feat to create awareness. Yes, it seems a little backwards. We cant really have a sleep-a-thon though and have people pledge money.

    I think as long as KGB makes it clear that the level of disability varies greatly with this illness and there are indeed many that fight just making it through the day. Again, I have been there. I actually was laying on the couch about to go absolutely crazy from staring at the same walls day in and day out and logged on to a CFS chat on a different forum. The people on the forum all seemed to know each other and one was racing around the house cleaning and the other was talking about her new hair color. This was a time when I could not have raced to the bathroom if I wanted or sat through some one coloring my hair. I logged off of chat because I could not relate.

    On the other hand I would like to address the lack of optimism. People are on these forums because they are sick. I first logged on to a chat early in my illness and got off crying because I COULD still work daily and I still hoped for a day I would get well. I was told I would only get worse or may not have CFS at all by the people on the forum. Again I could not relate but for the opposite reason.

    This illness has been a roller coaster ride. The ups and downs have driven me to depression worse than a constant level of consistent illness would have. To me that is part of the torture of this illness. I think if KGB points out that she may able to do this walk at this time but be bed bound next year. That makes this illness that much worse. We just dont know what the future holds and hopes gets knocked down time and time again.

    This walk is about awareness but it is also about KGB trying to remain positive and do something at the stage of this illness she is currently experiencing, She knows her body and gets the risk. Sometimes I think it is pure jealously that some one else with this illness is doing something we cannot anymore. Believe me, I get that.

    I really think all CFS forums can be depressing KGB. Chronic illness is depressing as hell! I learned a long time ago to come on these forums for the information I need. I look for new developments and to ocassionally support some one like you who is getting the same old "be careful....you cant push or you will fall ill forever...etc." There are few people with CFS that are that lacking in knowledge that they do not understand the risk of a possible bout with PEM.

    I personally dont think I have ever had PEM in all of these 30 years and yes I have CFS! Unless I am in a constant state of PEM. I cannot go out and party and I have to get consistent sleep etc. If I have a god day and enjoy it physically and mentally I do not pay the next day or week. My good days and bad days have never had a rhyme or reason.

    KGB....YOU GO!!!!
     
    justy likes this.
  2. CJB

    CJB Senior Member

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    KGB it's your life, your decision, but please carefully inform yourself before you try to inform the public. To get the true picture of what it means to recover from this disease, PLEASE listen to what Dr. Bell has to say about patients he's been following for 25 years. It's a real eye-opener. And of course, please take care of yourself. Best of luck.

    http://www.masscfids.org/resource-library/3/309
     
  3. Wayne

    Wayne Senior Member

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    Michelle, I read your post with a lot of interest, and a lot of understanding of where you're coming from. But I think the above was really unfair. I feel I know fairly well most of the PR members on this thread who have been advocating caution for a variety reasons, and I don't believe for a moment that their (legitimitate) concerns were coming from a place of jealousy.
     
  4. SOC

    SOC Senior Member

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    I am not at all jealous of KGBmi and I am very optimistic that I will continue to improve. My concern is for KGBmi and his health. Since he is not able to work or go to school, I think it's a legitimate concern that walking across the state will damage his health. I'm rather insulted that you would interpret my concern as jealousy.

    It's rare that a person with CFS does not have PEM/PENE. Both the CCC (ME/CFS) and the ICC (ME) require it as part of the definition. That's why I asked him whether he has PEM/PENE. If he doesn't, the question of harm to his health may be not as big an issue.
     
    Valentijn and warriorseekspeace like this.
  5. warriorseekspeace

    warriorseekspeace

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    KBG asked for feedback. Experienced wise "elders" are giving that feedback, and quite kindly, I might add. If KGB wants to reject that wisdom, that would be typical of someone so young. What healthy youth head the advice or even respect the wishes of those elders offering guidance?
    We need people healthy enough to walk even a mile, to dedicate their efforts to working with existing advocacy groups. Have you contacted Lori Chapo Kroger, of CFS Solutions of Western Michigan and Pandora, in Grand Rapids, MI, to inform them of your high level of functional ability and desire to help this community?
    And Michelle, I do not appreciate your explication that I am "jealous" either.
    I fully agree with and reiterate everything stated by Adreno, above, and also SOC, Wayne, Dainty, Purple, and Sushi.
    I have limited time right now, and my neurological symptoms become cognitively disabling upon getting as upset as Michelle's statements get me.
    I have to end my comments here, as I am trying to follow one project through to completion, of challenging the ethics of a pseudopsychological study which should never have been allowed, due to risk of harm to human subjects.
    It may take me a month or more to find out where to write, what agency to confront, and to write any letter or testimony. I would love to be able to do more, but this is the first time I feel hopeful enough that I may be able to do even this small thing for the community.
    Meanwhile, people with higher functional levels (apparently) and who do not have as much personal experience living with this illness and the way media has us by the small hairs, is proposing to waste energy doing something that will be used to justify the harmful research which is diverting the precious little funds away from real biomedical research.
     
    justinreilly and Wayne like this.
  6. warriorseekspeace

    warriorseekspeace

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    Adreno said
    Dainty said, well, read the entire post. She makes all very wise comments.

    Purple said
    [my emphasis added].
    I agree. I cannot see how so many on this site have exercised as much tact as they have, at such a preposterous idea.
     
    justinreilly likes this.
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    "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"

    I think this is a good point, I have been ill for 9 years now, at my worst about 3 years ago during a flare up. I don't get out as much as I used to, but becoming more frequent due to increasing health gains. So how would I know what the "sickest" life is like. I have a general understanding, but have never been bed bound!

    GG
     
    warriorseekspeace likes this.
  8. Dreambirdie

    Dreambirdie work in progress

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    What's that saying, "be careful what you ask for, because you just might get it."
    OR maybe you might get even more than you asked for.
    OR... maybe you ask for what you already know you don't really want, and are asking anyway, just because, because, because.

    The original question on this thread was:
    IS THE CAA A GOOD CHOICE FOR FACILITATING MONETARY DONATIONS TOWARDS?

    KGBmi had clearly already made up his mind about this, and was not going to allow any of our opinions to deter his decision about donating to the CAA. This was made clear in his first post, and in this one too:

    Please note that last sentence in regard to the following, and ask yourself if this is a person who really wants some genuine input about what he's doing and why, or not.

    I think there's lots of good ideas and feedback here, but I am pretty sure they are falling on deaf ears.
     
    Wayne and warriorseekspeace like this.
  9. Dainty

    Dainty Senior Member

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    Seeing that several have been affected by Mishelle's post and I find myself with the mental and physical energy to make a thorough reponse to it, I feel obligated to do so in order to hopefully set some things aright.

    First of all, Mishelle, I'm really sorry that some in this community have badly affected you. The people who come on chat are a but a miniscule fraction of the number of people posting and frequenting these forums. If you want a more accurate view on how this community as a whole feels about those with less severe cases I'd recommend you head over to the thread, "Is there a rule that If you work, you can't be a member here?" I think you'll be encouraged by the responses, and as you can read there everyone is asked to report personal attacks (especially pertaining to their health) to the moderators. I also believe there is a rule against giving medical advise. Your feelings are understandable, but taking your frustration out on all of us by painting the entire community with the same brush as a few rule breakers is both unkind and unfair.

    I haven't seen anyone advise feigning symptoms or disability for the media's sake. Someone suggested doing the walk-a-thon and not involving the media, and SOC pointed out that circumstances begged the question: why is someone with CFS capable of walking accross a state when they cannot work or go to school? If the media were involved, they would want to know why we're capable of making athletically demanding "grand gestures" but somehow cannot do the more mudnane parts of life - i.e. work or school - that are generally considered less difficult.

    The point I made, which others have affirmed and Sushi confirmed from first-hand knowledge, is that no matter how clear KGB makes the facts the media will probably neglact to publish the facts that don't suit their story unless KGB manages to control that side of things as well. I have discovered this to be the case with many news stories about various topics, and often if I search hard enough I can find pieces of the truth buried at the end of a single artcle in a more obscure newspaper, but that's it. Often times it is a newspaper comment or a blog post that actually sheds light on the issue. But even with the truth out there on some site somewhere, the story that 99.9% of people are aware of is only what the main newspaper(s) publish. KGB might be clear, but the additional clarifying information is not likely to actually reach the ears of the people who need to hear it.

    There are also few people lacking in knowledge that chronic illness is a depressing topic. So why do you advise KGB on the matter? The answer, obviously, is because something caused you to ascertain that it might be beneficial to explain it anyway, so you did. It is the same with those advising about PEM - sometimes it helps to hear from another person what you already know. It's one way we support each other around here. As for the personal effect of forums focused on chronic illness, this recent thread discusses the topic where others echo similar sentiments that you've stated here. You aren't alone in your opinions! The earlier thread I linked to demonstrates also that you are not the only one here with your level of functionality. So please don't isolate yourself from us under the assumption that we wouldn't or couldn't understand. It's a lonely world out there on your own.
     
    Wayne, SOC and warriorseekspeace like this.
  10. m1she11e

    m1she11e Senior Member

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    Im sorry for those who I offended. I made it clear that I too have been jealous during my lowest times. I find anytime in life we are reminding people of things they cant do because we cant there is a level of envy. We have all had our lives taken away to one degree or another. I just dont see where KGB asked if anyone thought he should do this or would he pay physically, yet this has once again become the topic of conversation. After 8 years I am sure PEM and the pacing has been brought to his attention plenty of times and he wasnt looking for the advice of the elders as to what his body is capable of. I hope KGB took something from my post and understood it in the way it was intended.
     
  11. SOC

    SOC Senior Member

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    No need to feel sorry for me. I don't ask for pity and I'm not in a state of denial about my reaction to KGBmi's proposal.

    I think you are making the mistake of assuming that everyone has the same emotional reactions you do.

    I assure you that I am not, and never have been, jealous of PWME who are able to do more than I am -- and I'm certainly not inclined to discourage or otherwise undermine another PWME out of jealousy of their capability. :rolleyes: You may think that way, but don't assume that I do.

    You need to consider that this young man is 20yo, so his 8 years of illness occurred during his pre-teen and teen years -- not the age one is likely to be getting extremely knowledgeable about a complex illness. His mission statement suggests that he has only seen the typical ignorant doctors, not any ME/CFS specialist. It is, in fact, more than likely that this young man has not had PEM and pacing brought to attention plenty of times. His current mission statement suggests that he has not.

    Have you read the mission statement? If not, m1she11e, I suggest you PM him and ask for it.

    The bottom line is that KGBmi is a (very young) adult and makes his own decisions. He is also old enough to listen to others with knowledge and experience and judge what to do with that information. He will do what he chooses to do.

    KGBmi is asking, both explicitly and implicitly, for some support for the ME/CFS community, so it's no surprise that individuals are expressing their support or concerns on this thread.
     
  12. warriorseekspeace

    warriorseekspeace

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    Had many of the same thoughts. Glad you posted SOC.
     
    justinreilly likes this.
  13. Whit

    Whit Senior Member

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    I have to agree with everyone here saying this is not going to send the right message. I hope to someday live in a world where CFS is understood well enough for fundraising like this to work.

    But for this to work, the public would first have to know how difficult it is going to be for you to accomplish this, and what you are up against, and the much worse circumstances that most people with CFS are up against. For people to have admiration for something, they have to know the challenge at hand. They have to first know how bad CFS can be, and then think "wow, that terrible image of a person unable to move their hand, and he is walking across a state, wow!". But people dont have this image. There is in fact, no image. CFS is a blank slate.

    So we have to be very careful how we communicate CFS to the public, because with a blank slate, any image is very powerful and influential. And I agree with others that this will be interpreted as someone "overcoming" CFS with will power. Which will do more harm than good.

    Here's a cheezy analogy: Think of CFS as someone having to walk into strong oncoming wind. If you look at a video of that person walking, and compare it to someone walking without wind, you'd have no idea that the person walking into the wind was doing way more work for the same result. Because you can't tell from the video how strong the wind is. Before people can have admiration for someone walking into oncoming wind, they have to know what they are up against. They have to know how strong the wind is, and right now with CFS, people don't.

    the media also reduces things to simple, black and white images. The image you are presenting is a person with CFS walking. that's what people will remember. None of the backstory you're going to tell will get through. And that backstory is the image we need out there. the image we need out there is someone in a hospital bed unable to speak, a gifted 29 year old stuck at home in bed, unable to contribute to society. Thousands of silenced voices.

    So I do hope that someday, awareness for CFS will be such that people will understand how difficult it is for those with CFS, and know how amazing it is for someone to walk across the state with CFS. Because they know how bad CFS can be.

    But right now I think awareness needs to focus not on someone "overcoming the illness" but on how debilitating the illness is, all the millions of people who have never, and may never walk outside freely again in their lives. I haven't gone on a walk in 2 years. I get pushed around sometimes in a wheelchair. And just the exposure to the real world exhausts me.

    I must praise you for your courage and enthusiasm though, which is really awesome. We need more people trying to make a difference for CFS!

    Maybe we can help you hone your plans into something that will convey the right image?
     
  14. KGBmi

    KGBmi

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    Wow. Just wow. I may respond to some of your posts later, but not now, now I'll just try to determine what might produce productive interaction. For now I'm merely going to post my Mission Statement:

    Hi, my name is Koerner Gray Buchta, and I’m 20 years old. For the last eight years of my life, I’ve had an illness known as Chronic Fatigue Syndrome, or Myalgic Encephalomyalitis (often abbreviated to ME/CFS, or sometimes CFIDS). It’s basically what the name implies: I experience exhaustion on a chronic basis that is not relieved by sleep or rest, as well as headaches, insomnia, and muscle weakness. There is no known cure for ME/CFS, medical professionals are uncertain about its cause, and there is no consistently effective treatment. I lost two years of high school to CFS; I spent most of my time bed-ridden during that period, and it took an extra year to graduate as I learned to deal with the limitations that the disease has imposed upon me. This was a very difficult time for me. I lost contact with most of my friends, became depressed, and spent a lot of time wondering if I was simply lazy, or maybe just inexplicably and irreparably defective. I saw dozens of medical specialists, spending thousands of dollars, but none of them helped me. It took five years to receive a diagnosis, and it brought an official sounding name to call the fatigue and other debilitating symptoms that I was experiencing, but not much else. ME/CFS has effectively derailed my life, and has made attending college prohibitively difficult for the last two years.

    However, I am lucky in that the illness is not nearly as severe as it was two or three years ago; I’ve tried dozens of different medical approaches, and I can’t attribute my relative success to any one of them in particular. While I still find it difficult to work a normal job or return to school, I am no longer resigned to bed and can handle some physical activity. It’s frustrating how little control I feel over my health and my life, but given the fact that - for whatever reason - I feel I am more physically capable than I once was, I feel it’s almost a moral imperative to do what I can to help fund ME/CFS research and raise awareness of the disease. According to the CDC, 1,000,000 Americans are afflicted with ME/CFS, many of whom are undiagnosed, and the illness in its most severe form leaves the victim bed-ridden, in chronic pain, unable to perform basic self-care. Other people are suffering right now - going from doctor to clueless doctor, being told that it’s all in their heads, unsure of what’s happening to them, frightened, alone, tired - and I feel it would be unethical for me to merely accept my improved health (an absurdly arbitrary and maybe short-lived gift anyway) without doing something for those people.

    I plan to do this by walking across the state of Michigan - from Detroit to Holland - to raise money for the CFIDS Association of America. The CFIDS Association of America (CAA) is the largest advocacy and research organization for ME/CFS patients in the United States. The CAA is dedicated to supporting “research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.” All donations are tax-deductible in the US. You can easily donate online, as I will have a link on my website. I will begin this walk on August 15th, and plan on finishing by September 20th. I will be making multiple stops along the way, and you will be able to track my progress online.

    Any money you give goes toward finding potential causes, treatments, and even a cure for ME/CFS, but beyond that it gives me, and 999,999 other Americans hope. Few people have heard of ME/CFS, and it’s easy for victims to feel isolated and ignored. In the years before my diagnosis I witnessed my peers leading apparently healthy, normal lives - concerts, proms, football games, etc. - while mine seemed to consist of little but an endless procession of doctors in starched coats telling me that it was all in my head, that there was nothing really wrong with me, or that there was clearly something very wrong with me, but they had no idea what. I felt frightened and alone, but there were and are hundreds of thousands of other people in this country experiencing the exact same feelings, though their exact circumstances may be different. By giving any amount - no matter how small - you are acknowledging us, telling us that you care and that we are not alone.

    I may be comparatively unique in that I have ME/CFS, but I am not even slightly unique in that I have something in my life that causes me to suffer, an obstacle that holds me back. This walk is a physical and symbolic action against this obstacle in my life. Even if I fail for whatever reason, I will know that I have chosen to live in a way that I humbly believe is brave. Since some suffering is inevitable in life, I believe the bravest way to live is to live in direct acknowledgment of and engagement with the causes of your suffering, and to work tirelessly against those causes, regardless of the likelihood of your ultimate success. I don’t want you to see me as separate from you. Even if you don’t send me a penny and speak to no one about ME/CFS, I hope that my actions serve as an inspiration for people to directly confront the things that hold them back, to just do something about it. This is all I am trying to do.

    Love,
    Koerner
     
    beaverfury likes this.
  15. KGBmi

    KGBmi

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    Yes, thank you. I may respond further later.
     
  16. peggy-sue

    peggy-sue

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    How many members of the public are going to read a mission statement that long?:whistle:
    They won't. They will loose interest half-way through the first paragraph.
    This is a very major problem with communicating with the public. They have a very, very short attention span.
    What we need is a powerful image - something such as the MS poster years ago that folk STILL talk about - an image of somebody's back, with the spine half unzipped.

    As to my being jealous?
    At the moment I'm on my own - my OH is on holiday, rock climbing. I'm happy for him, but of course I'm upset I can't be with him. This disease has robbed us of being active together - one of our greatest joys.
    I can't afford to be jealous - it would eat me up. I'm grateful for the little I can do and accept what I can't - and I can be happy for him having a good time without me. It keeps him sane.
     
  17. m1she11e

    m1she11e Senior Member

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    Oh my....should have stuck to seeking out information that directly relates to my treatment as usual.

    I will make my point one last time...KGB came on here asking about which charity he should donate too. Ive seen many posts over the years where everyone swoops down with the warnings of physical activity. If his thread was asking about physical activity and if anyone thought walking Michigan would cause a price to his physical well being then I would understand. I was defensive because it doesnt make much sense to me to start warning him about "paying later." Jealously was a strong word and I am sorry I used it. Sorry doesnt always indicate pity btw.

    Too much to respond to that I think distracts from the point of this thread. This type of dialogue is draining and non productive and I am not sure why I really even engaged. Maybe I knew how I felt when I was always being told to not go and do and live or I would pay. It is very depressing and can really bash hope! I apologize (not out of pity KGB) for any further distraction coming from me.

    I enjoyed your mission statement as it is YOUR experience with CFS! I appreciate you wanting to do something for the others that have been sick too long and for those that are far sicker than most of us can even comprehend.
     
  18. peggy-sue

    peggy-sue

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    You say; "Maybe I knew how I felt when I was always being told to not go and do and live or I would pay. It is very depressing and can really bash hope!"

    For anybody who does suffer from ME which includes the cardinal symptom of PENE, this is really, really important information - it could save the rest of their lives. Better to risk somebody's hope being briefly dashed than the rest of their life bedridden.
    I'm sorry you felt badly treated on ME forums Mishelle, but it doesn't sound like whatever is wrtong with you is ME. CFS is a syndrome - it's not a diagnosis of anything. It means you have something undiagnosed which is causing your problems. You are another victim of this bucket mishmash non-diagnostic labelling.
     
    justinreilly likes this.
  19. Mark

    Mark Acting CEO

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    Consensus around the science and definition of ME/CFS can be hard to find, but it seems to me that one of the most central emerging areas of consensus amongst ME/CFS physicians and patient advocates is that post-exertional malaise (PEM), or post-exertional relapse, or post-exertional neuroimmune exhaustion (PENE), should be a required part of the diagnostic criteria. The Lights' study strongly supports this theory that exercise or exertion causes a relapse of symptoms, and a unique and identifiable pattern of inflammation, appearing 24-48 hours after exercise.

    The predominant treatment recommendations of CBT and graded exercise therapy (GET) fail to take these findings into account, and the concept of post-exertional malaise has not yet been successfully communicated to the public, to physicians, to the media, or to decision-makers, and this is one of the most fundamental problems we face as a community. The public perception that we could get better if we exercised more, and the basic idea that ME/CFS patients respond to exercise in just the same way as healthy people and would benefit from exercise just like healthy people - that perception is one of the most damaging things we have to deal with and it's a perception we constantly need to counter. It is no exaggeration at all to say that the widespread failure to understand this crucial point has caused the deterioration and deaths of countless patients.

    Against that background, I have to share the concerns expressed repeatedly on this thread that a sponsored walk by a former ME/CFS patient, however well intentioned, is highly likely to result in publicity that's very negative from the point of view of sufferers from severe PENE. However one attempts to communicate the message that some people diagnosed with CFS are able to recover to a state that they are able to attempt such a feat, but many others remain bedbound and simply can't exercise their way out, the media and the public are highly likely to be reinforced in their belief that ME/CFS patients just need to try harder and here's an example of somebody who had the will-power to do just that. It's very likely to be highly counter-productive to the message that we need to get across.

    In some ways I regret having to say this, because I don't doubt that some people who have suffered severe incapacity with a CFS diagnosis do recover to the extent that they can lead active lives, I think it is very well-intentioned to do something to raise money for ME/CFS research and a sponsored walk seems like a natural way to do that. I don't want to be negative about anybody's well-intentioned efforts to help, I certainly don't want to be negative about the personal goal to walk across your state (though I'd advise great caution on medical grounds) and I don't have a ready-made alternative fundraising plan to propose. But I can't ignore the negative publicity implications of this plan.

    I am not, myself, as severely incapacitated as the most severely-affected ME/CFS sufferers. I don't assume for one minute that I actually have the same illness as those severely ill and bedbound people, and I am extremely cautious about extending my own experience and assuming it applies to everyone. I'm also acutely aware that the most severely affected should be the highest priority for research and that their views should always be taken into account. KGBmi, I do hope that you will similarly take those concerns seriously.
     
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  20. Nielk

    Nielk

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    Mark,

    You put into words exactly how I feel about this situation.

    I, too, am afraid that as much as this walk is very well intentioned and I'm grateful to KJBmi for his desire to raise awareness, I'm afraid that it will backfire on us.

    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.

    Are there any Diabetics who are recovered enough to be able to safely eat a large amount of cake? I'm not sure but, he surely would not be representing the best picture of the illness.
     
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