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CFS Affects Thousands in Our West MI; What is it?

Jessie DeDecker has dreams of going into theatre.

Lori Chapo-Kroger is a former ICU nurse.

They’re two women at two different stages in life. However, they share a similar struggle few can relate to.

That struggle is chronic fatigue syndrome or myalgic encephalomyelitis (ME).

“I worked full-time, and I worked midnights and I lost my job when I got this, because I just couldn’t keep up. The more I tried to act normal, the sicker I got,” Lori Chapo-Kroger said.

DeDecker said she had to drop out of high school because of it. For both, CFS started as a mystery illness.

A virus affected their bodies, leading to a wide range of symptoms, including headaches, sore throat, and loss of memory. Others include unrefreshing sleep, postexertional malaise, and tender lymph nodes.

Ultimately, simple tasks leave both feeling extremely tired.

“My whole body is just tired, and sometimes my muscles ache and my joints ache and I, I literally feel like sleeping for the whole day,” DeDecker explained.

“And it takes years to get diagnosed. It took me three years to get diagnosed. That’s the whole thing. There’s very few experts,” Chapo-Kroger said.

According to the Centers for Disease Control, about 17 million people have the disorder worldwide. About one million in the US have it. In West Michigan, about 8,000 suffer.

“But, the sad part is, about 84% of the people are not diagnosed,” she added.

Both women said there’s a stigma that comes with the illness.

“That you’re just lazy, that you’re depressed. Some people have a very hard time believing this is a real illness and unfortunately some doctors don’t believe this is a real illness,” Chapo-Kroger said.

They said it’s very much real, and knowing their physical limitations is the key to managing an illness with no known cure.

“I’m not going to let it stop me. I’m going to go to college, like I said, I’m not going to let it stop me,” DeDecker said.

Treatment for individual symptoms is an option, according to the CDC. Diet and supplements play a role. Also, patient history, physical exams, and routine laboratory tests are part of the process.

Chapo-Kroger runs a support called CFS Solutions of West Michigan. It can be found by clicking here.

The groups Facebook page can be found at this link.

VIEW & ADD COMMENTS

29 Comments to “CFS Affects Thousands in Our West MI; What is it?”

    Laurie DeDecker said:
    February 28, 2013 at 9:40 AM

    Thank you so much for your story on CFS. Raising awareness is so important. It is a devistating condition that takes way to long to be diagnosed, so your story is very important for all those who are affected. I look forward to the day when all those who are affected get prompt and appropriate diagnosis and care. Thanks again!

    HReed said:
    February 28, 2013 at 10:34 AM

    Until you feel the pain, tiredness, and anxiety issues I have every day, YOU have no right to judge me or my illness!! It hurts just to get up in the morning!! It hurts just as much to hear a doctor tell me its all in my head!! I wish the pain and all the other effects of this and Fibromyagia on every doctor who has ever said that to a patient!!

      Nana Connie said:
      March 1, 2013 at 12:22 AM

      I too have CFS and FMS and life in unbearable. The pain, headaches, lack of energy, difficulty getting out of bed, climbing steps you name it, I can't do it. I do my best to make every day count even if I only count to 2. I'm in MI too but on the very SE part. Fortunately my family doctor treats me for both and is very understanding of my pain.

    Cathy Kamyszek said:
    February 28, 2013 at 10:35 AM

    I also am extremely grateful for your story on Chronic Fatigue Syndrome. It is a horrible illness that really alters your life yet there is no awareness, very little medical support, and very little research. It is hard to be so sick with no real solutions. Thank You so much!

    snowathlete said:
    February 28, 2013 at 11:32 AM

    Thanks for running the story. its important that readers are educated about this illness, because truely anyone of them could get it at any time. you never think it will happen to you, but it does.

    frenchtulip said:
    February 28, 2013 at 11:42 AM

    Thank you for helping to educate the public about chronic fatigue syndrome/myalgic encephalomyelitis–an unbelievably devastating and complex physiological illness!

    Anonymous said:
    February 28, 2013 at 12:07 PM

    Thank you for running the story on ME/CFS. This is a real and a debilitating physical illness. Patients and their families have had their lives turned upside-down. The broadcasting of this story will raise awareness and for that, we thank you.

    rebecca said:
    February 28, 2013 at 12:21 PM

    It makes me so happy to see CFS being covered in the media. I have suffered for over 12 years with it, and still have trouble finding Doctors willing to help me and believe me. The public really knows very little about it, and usually assumes the sufferers are lazy or depressed. It is heartbreaking trying to convince people that you are sick and you would love nothing more than to live a healthy life!

    Jodie said:
    February 28, 2013 at 12:24 PM

    Thank you for this article! I also have CFS. It took me a little over a year to get diagnosed and I am only becoming more disabled over time. The stigmatization by doctors, friends and family is a terrible burden on top of the loss of so many aspects of my life. Raising awareness with accurate information is so valuable! Thank you!

    Nagel said:
    February 28, 2013 at 12:40 PM

    Thank you for raising awareness about ME/CFS with this story. I have ME/CFS and before being diagnosed was told I was crazy, was lazy, and had nothing seriously wrong.

    pepsilovr said:
    February 28, 2013 at 12:42 PM

    I too, want to thank you for raising this issue. It’s much maligned, much understood, and the research dollars are just not there. It’s really a tragedy, considering how many people are affected. It’s articles like this, which serve to help erase the stigma, which are ultimately part of the solution.

    Lonna said:
    February 28, 2013 at 1:04 PM

    Once again Thank-You for this article! It is difficult to get diagnosed and the doctors do not seem to have a handle on it. As one of the previous comments said it is stories like this one that help raise awareness, dispel misnomers, and help patients with CFS be not forgotten …… for they are so tired they don't get out much.

    Barbara said:
    February 28, 2013 at 1:24 PM

    When I was (finally) diagnosed with CFS/ME, I was surprised by how little I actually knew about it–except for some odds and ends, and my own misery and the loss of my "former" (healthy) life. I had so much to learn about the illness, the science, lifestyle changes, everything–and I was a very motivated learner. I try to remember that when I tell people about the illness and its prognosis and effects, and I am always deeply grateful anytime a story appears in the press, giving readers a view into the peculiar world of an illness which leaves you looking fairly well and miserably ill at the same time.

    Lynn said:
    February 28, 2013 at 1:27 PM

    Thank you so much for helping to bring awareness to this debilitating illness, an illness that has so many patients worldwide, that have become bed bound. CFS, often referred to as ME/CFS, or in other countries just ME, is so much more than just fatigue. Patients suffer terribly from muscle and joint pain, muscle weakness, headaches, sore throats, tender lymph nodes, low grade temps, air hunger, chest pain and palpitations, tachycardia, cognitive problems, profuse sweating-all the while having deep chills, sensitivity to light, sound, touch, and temperature. These are just to name a few of the strange symptoms that plague CFS patients. I hope that you will take the time to do a follow up segment with Lori or Jessie and discuss with them the patients that have become basically invisible, because of lack of understanding and proper health care. These patients are bed bound…..often going without any medical care at all. You can only go on for so long, being told time and time again that it is all in your head, and there is nothing Drs. can do for you. Many patients just give up. But there are currently Drs that are starting studies, looking for treatments and possibly a cure for this disease that has devastated so many lives. One example can be found at openmedicinefoundation.org. Thank you again, so very much, for shedding a little light on this complex illness. Bringing awareness to ME/CFS, until recently, seems to have been left to patients and their families. It's nice to see that the media is starting to give ME/CFS the coverage that it so desperately needs and deserves.

    Karen said:
    February 28, 2013 at 1:28 PM

    Thank you for running this article. As a me/cfs patient of 18 years I appreciate you covering the story to raise awareness.

    Eelia said:
    February 28, 2013 at 1:48 PM

    Thank you so much for shedding some news time on this cruse called CFS. I was thought for years to have this and lost my home job and my self confidence. There are so many people out there that need help! and are just not getting it! After a close call accident I decided to finally get a sleep study done. I am not sure why it took me years to think of it! None of my doctors ever thought of it either! It turns out I have Narcolepsy with cataplexy a rare neurological disease that effects the bodies sleep regulation. There is no cure for that either but I was started on a new type of non-addicting stimulant that helps. I am wondering if this could help people with CFS?? I take the generic brand of Provigil so it is not hard on the pocket book and it enables me to work from home now! I was on SSDI for years before I tried this treatment!

      wingedwolfpsion said:
      February 28, 2013 at 9:25 PM

      Provigil is good for short bursts of energy when you absolutely need to get something done, but the effects wear down if you take it regularly. (It's also not non-addicting from what I understand). It's a very expensive drug. It does not prevent the crash that comes from overexerting yourself; so, if you take Provigil to get stuff done, then you pay for it later. I also had no trouble sleeping while on this drug, lol. So, the answer is : yes, this can be of limited help to people with CFS, but it's certainly not a long-term solution.

    LoriChapoKroger said:
    February 28, 2013 at 2:04 PM

    Thank you Darren Cunningham, and Fox 17, for increasing awareness about ME/CFS. There are over 8,000 people with ME/CFS in the Greater Grand Rapids Area. CFS Solutions is a local P.A.N.D.O.R.A. program that provides help and hope through positive support and education. CFS Solutions holds empowerment classes and support groups in three cities in West Michigan: Grand Rapids, Byron Center and Muskegon.

    If you are reading this and believe you have ME/CFS or fibromyalgia, you are welcomed to come CFS Solutions free, open to the public meetings. Please visit CFS Solutions website for more information. http://www.cfssolutions.org/empowerment-groups.ht

    You are not alone.

    Lori Chapo-Kroger
    President
    PANDORA / CFS Solutions

    Tammie said:
    February 28, 2013 at 3:09 PM

    very nice to see it covered & it was a decent job, esp for such a short amt of time…..however, I always cringe when I hear someone say that they aren't goign to let it (CFS) stop them…..that's what I, & many others, thought when we were diagnosed (after all I was a tough marathon runner & athlete, & I had been thru a ton of traumas, injuries, & illnesses w/o ever letting them stop me, so why should this be any different?)…..but all that trying to push thru, & not let CFS stop me, did was cause it to get a lot worse permanently

    like many others, I learned the hard way that we don't get to decide to not let it stop us – there is NOTHING abt this illness that we can control thru will power or motivation or anything else like that, no matter how much we might want it to be so, and no matter how determined we might be

    yet when someone makes that statement, as admirable as it might be for them to want to not let it stop them, it actually comes across as invalidating for those who APPEAR to have let it stop them (though in most cases they probably fought tooth & nail to prevent it from doing so), & it also worries me for that person, because if she really does try to keep pushing thru it, she will wind up paying a steep price

    that is not to say that we should just give up on life (definitely not saying that), but it is to say that we have to pace, we have to allow our bodies to rest, and we have to come to some level of acceptance that it is goign to dramatically slow us down and alter our lives

    Merry Speece said:
    February 28, 2013 at 3:12 PM

    Thank you, Darren Cunningham, for your article about ME/CFS, and thank you, Jessie DeDecker and Lori Chappo-Kroger, for your willingness to talk about your lives as ME/CFS patients. All three of you are to be commended for your effort to educate the public about a devastating illness.

    Allie said:
    February 28, 2013 at 4:54 PM

    I am thrilled to see this topic being covered in our local news. In the greater Grand Rapids area alone, it is estimated by CDC figures that some 8,000 people suffer from this illness and yet there is not a single CFS specialist in Grand Rapids to treat them. This is a travesty in a city that prides itself on being in on the cutting edge of medical research and treatment. The medical community in Grand Rapids needs to step up and take some leadership about this rather than leave patients alone and suffering in their beds with the walls closing in around them and no local treatment options. I would love nothing better than to see just one doctor… just one… contact the organization mentioned above and offer their services to its clients. I would fall over in a fit of ecstasy if an organization like the VanAndel Institute took an interest. We have the medical expertise here. Now, if we could only get them to care.

    Luan said:
    February 28, 2013 at 6:19 PM

    Thank you, Darren, Great job. I, too, have felt the stigma of having ME/CFS. It hurts to have someone tell you to just get a good nights sleep, to just push through it, to get over yourself– there are lots more, but you get the picture. Public awareness is exactly what is needed to let everyone know that this is a real and terrible disease. The above comments by Tammie , are very well worded-Thank you Tammie. A special thank you to Lori for all the support and work you do to help all of us with ME/CFS.

    wingedwolfpsion said:
    February 28, 2013 at 9:26 PM

    "Treatment for individual symptoms is an option" – there aren't any that actually do much. "Diet and supplements play a role" – Not really. Obviously if you are healthier overall, you'll feel a little better, but that only works if you were actually unhealthy beforehand. (In other words, if your diet was already fine, taking supplements will not do anything).

    Holly said:
    February 28, 2013 at 10:43 PM

    Thank you for covering this story!

    Julie March said:
    March 1, 2013 at 2:30 PM

    Thank you for your coverage on CF/FM/ME which is frequently misunderstood. There are so many people who suffer in silence out of fear of sounding like a hypochondriac.

    non hiv aids? said:
    March 1, 2013 at 10:34 PM

    Chapter 33 of Hillary Johnson's: Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome (CFS) Epidemic is "HIV-NEGATIVE AIDS."

    Neenyah Ostrom's book "America's Biggest Cover-up: 50 More Things…CFS & Its Link To AIDS" cites: "Some CFS Patients May Be Non-HIV AIDS Cases."

    Will CFS ever make any progress unless we acknowledge this fact?

    Published 12 times on 4 continents, my life w/ NON HIV AIDS: http://www.ukprogressive.co.uk/the-aids-like-disease-sel...

    Or simply google “NON HIV AIDS”

    Leah said:
    March 2, 2013 at 12:41 PM

    It means so very much to people who, like me, have suffered with this terrible disease to see forward-thinking news reporting bringing awareness to the fact that ME/CFS is absolutely a real, life-stealing illness. It's difficult enough to be this devastatingly ill, to lose your health, independence, social interactions and ability to contribute even in your own physical care, but then to so often be maligned, rejected and ridiculed by your own family..people in your life and, most often, people in the medical community..it is a desperate and lonely existence.
    This story needs to be told, re-told for the sake of credibility, real serious research and treatments are achieved. People are losing their lives to this ignorance.

    Laurie said:
    March 2, 2013 at 2:39 PM

    In response to Tammies comments above,
    I hear and understand your concerns. But I do want to clarify that Jessie was 13 when she first got sick. It’s my understanding that long-term outcomes can be different between children and adults. Evidenlty some children do recover to some degree, whereas adults often may continue to decline. She has definately had to learn to pace herself…as she said, some days she stays in bed all day. But for her, an accurate diagnosis allowed her to be treated with things like vitamin B12, vitamin D3, medications for yeast and parasites, and an antiviral (for the 2 chronic viruses she has) which have all made a huge difference in how she feels and her quality of life. She has also used many non-traditional healing methods including energy healing, regression therapy and supplements aimed at some of the underlying physiology/biochemistry of her symptoms. No cure, but each thing she added made a positive difference in how she felt. Everyone is different, but without a diangosis there is no way to move in a better direction.

    Her ‘never give up’ attitude today is far different from the early days of her illness when she felt it would be better to die than to go on being sick and have doctors tell her it was all in her head. I think one of the worst things about ME/CFS is that the lack of research and a poor understanding of the cause of the condition steals all hope, since nothing seems to help. We all need to continue to push for more research so that we can find more effective treatments and work toward a cure…to that end I will never give up!!

    Gloria said:
    March 21, 2013 at 5:05 PM

    I live in North Carolina and have had CFS now for 6 1/2 years. Thankyou for your willingness to talk about it on air! Every time someone speaks about this illness helps others who have it not feel so much
    alone. I thank you so very much for your courage!

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