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Finding ME in Minnesota

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Lisa Alioto
In 2016, I was diagnosed with myalgic encephalomyelitis (ME). My first thought was, what is that?? All I knew was that it was taking over my life. I soon learned that ME is a multisystem disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It’s more commonly known in the United States as chronic fatigue syndrome (CFS). This debilitating disease affects 17-24 million people globally.

My next thought was, why haven’t I heard of this before? Am I all alone in this? Ironically enough, it’s estimated that more than 17,000 people in Minnesota have ME. Approximately 75 percent of them are homebound, with a quarter of them also being bedbound. So many hidden away in their homes, hidden away from society.

As someone with ME, I felt lost and alone with this disease until I found one other person with ME, and that led to another, and another. Soon it became apparent that we needed to unite if we were going to have a fighting chance at improving our lives.

In comes the Minnesota ME/CFS Alliance, a new Minnesota nonprofit organization dedicated to supporting ME/CFS patient and caregiver needs through support, advocacy, and generating enhanced medical care options. The Alliance’s goals are to promote a timely diagnosis with qualified medical support, alleviate patient suffering, and support research for a cure for this underserved and vulnerable population.

Living with an invisible, isolating illness can be unbearable. I have found that connecting with others with the same, often misunderstood and medically underserved condition has been priceless though; the validation, the “survival” strategy sharing, and simply not feeling so alone — all of it has been invaluable in ways that are hard to explain.

I should clarify, when I say alone, I don’t just mean isolated in our homes as we work with our medical providers on managing the painful, exhausting symptoms of ME. I mean ALONE. Minnesota, a state that proudly touts a strong medical industry, is also a state with very, very minimal medical provider support for this condition. It’s embarrassingly true. As someone with ME, my biggest source of information on how to minimize the effects of my symptoms is Google and Facebook groups. Seriously!

If you are one of the thousands missing in Minnesota, I encourage you to connect with me, vice president of the Minnesota ME/CFS Alliance (lisa.m.alioto@gmail.com) or our organization (mnmecfs@gmail.com). You are no longer alone; we understand your pain, challenges, and needs. We are here to help! Together we will work toward unified goals to enhance our quality of life.

Patients, caregivers, please join us! And if you are interested in donating to this cause, please feel free to reach out to us at mnmecfs@gmail.com.

Lisa Alioto is a lawyer, career coach, and myalgic encephalomyelitis warrior with a strong belief in the power of positivity. She is also the vice president of the MN ME/CFS Alliance. Alioto is passionate about supporting ME/CFS patient and caregiver needs through support, advocacy, and generating enhanced medical care options.

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Comments (11)

  1. Submitted by Christopher Bergan on 10/07/2018 - 02:18 pm.

    My daughter also has ME.
    She was quite bewildered in her early 20’s as it took a few years, several doctors, and time combing the internet to stumble upon a proper diagnosis. She’s been in the hospice program twice, but as she didn’t pass on within a few weeks, she’s not now. Much of her journey is recorded online at DocumentingME.net.

    I wish you well, Lisa. Do what you can while you can – just not all at once.

  2. Submitted by Lisa Alioto on 10/08/2018 - 07:58 am.

    I am so sorry to hear about your daughter. I completely can related to the years of trial and error before a proper diagnosis came along. We definitely hope to change that – no one should have to go through that. I will check out her site. When it comes to pacing… I’m still a work in progress on that!

    Thank you for the well wishes. I do hope that your daughter is doing better. Please feel free to reach out to us at any time and if you would like to be added to our email list for updates on our progress in Minnesota, please feel free to email me (lisa.m.alioto@gmail) or at the Minnesota ME/CFS Alliance at mnmecfs@gmail.com.

    Take care and my best to your daughter,

    LIsa

    • Submitted by LK WOODRUFF on 10/11/2018 - 05:19 pm.

      Facts and details matter, after 30+ years of CFS patients trying to highjack ME because they want a name that ‘sounds more serious’, lumping the two together (ME/CFS) for years, or now just claiming to have ME without meeting the onset or prodomal phase, having the precise symptom clusters, and so on.

      Below are some salient facts. I have had ME 20 years. It is rare. There may be 17 patients in MN…but certainly not thousands.

      Donna F Pickett, of the NCHS–the only USA federal agency charged with accurately doing and diagnosing diseases, illness & syndromes–has clearly spoken (excerpts):

      The definitions are different. ME is not a fatigue syndrome. Some symptoms may overlap…they are different in nature and outcome….NCHS has coded ME and CFS accurately.

      CFS is by definition a symptom syndrome and coding is accurate at R53.82 (under general signs symptoms).

      ME is coded by the WHO under G93.3, Brain, Neuro, CNS.

      None of the CFS definitions define what would be recognized as identifying a neurological disease. Post exertional malaise is not a hallmark of CFS. If an illness excludes that which you have, then you do not have that illness. There is no ICD code for ME/CFS so is not a recognized diagnostic entity.

      Otherwise ME/CFS is another made up term with different meanings and should not be used in the US any official capacity.
      CFSAC should recognized the importance of having the codes accurately reflect the definition congruent with the US federal health system. They should only recommend that which is in accordance with sound scientific and taxonomic principles, and not based on politics or PR or influenced by signs, slogans, posters or tee shirts.

      HHS should not allow different agencies to change names or definitions or adopt or use different terminology or meanings…Using terms incorrectly and repeating a falsehood does not make it true.

      ME is diagnosed in the US. It is not well recognized, which is a problem, but this does not justify keeping it as a CFS (mis)diagnosis. It is of course not as common as a vague, broadly defined fatigue syndrome….

      ME should not be called CFS. CFS should not be called ME.
      The construct ‘ME/CFS ‘should be abandoned.

      The best primary source for all info is the Hummingbirds Foundation for ME website, which is the largest ME website in the world. It contains pretty much everything known to-date about true ME (even tho it’s dedicated founder, Jodi Bassett, succumbed to her disease a few years ago.)

      http://www.HFME.org

      • Submitted by Peter Bassett on 10/26/2018 - 03:11 am.

        Hi Lisa, just checking that Jodi’s website is still working, and found your post here.
        I’m Jodi’s father, and yes, still grieving. Anyhow, Jodi died in June 2016, aged 40, from Metastatic breast cancer. She battled it so stoicly for 2 years but it was too strong and she wasn’t able to tolerate the conventional treatments due to her M.E.
        She was in fact getting over the M.E. before the cancer, and was able to leave the house for the first time in 10 years or so, even drove our car.It was all so unfair, but that is life and we have to accept it. We are so proud of her.

        • Submitted by Lisa Alioto on 10/30/2018 - 08:51 pm.

          Peter,

          I am so, so sorry to hear of your loss. Your daughter sounds incredibly brave. I’m so sorry she had to go through so much in her life. She truly is an angel among us and an inspiration to keep fighting for more and better healthcare treatments and options and for cures for these illnesses.

          Thank you for reaching out – my heart goes out to you and your family.

          Take care,

          Lisa

  3. Submitted by Britter Ritter on 10/08/2018 - 11:00 pm.

    This is, sadly, a nationwide situation. Because it does not have obvious remedies, and too many doctors and medical schools refuse to accept its existence, there is little training given and very few specialists. It makes no sense, as any specialist would be swamped with patients. It simply has no cachet, unlike cancers, AIDS, and other diseases du jour. People suffer too silently, because it takes energy to organize and force change to happen.
    I have it, too, and even though my family cares, they have done little about it, no activism, no speaking out. It’s like in olden times, when sick people were hidden away and not discussed.
    And it’s embarrassing to tell people and have them say, oh, yes, I had that for a few months, a year, and then I got better. Thanks. No one wants to do anything. Even when Cher said she had it, nothing really changed. But then, she didn’t do much beyond that. I’m not aware of her doing anything like Elizabeth Taylor did for AIDS, or funding any major research or treatment programs.
    It can be treated by managing symptoms, by thorough testing and examination to uncover hidden symptoms, and finding ways to manage living within the limited parameters it gives you. Of course, too many wholistic practitioners will tell you they can cure it and take your money, but they can’t.
    It is going to take a concerted effort by a lot of people to force the AMA to take this too-common disease seriously and to make it a priority, instead of easy targets like “obesity.” CFS/ME IS the number ONE health problem in this country. Fortunately, or not, if you call it Fibromyalgia instead, you can get more help.

  4. Submitted by Lisa Alioto on 10/10/2018 - 05:34 pm.

    Britter,

    Unfortunately you are spot-on – this is a nationwide situation/mess. You mentioned a few famous people – not that I would wish this terrible disease on anyone, but what Michael J. Fox has done for Parkinson’s disease on so many levels has been amazing. We need a Michael J. Fox.

    I agree too that it is going to take quite a bit to move this big ship, but on the same side of things, I’m determined to use every little bit of energy I have to help make that happen. Please feel free to private message me for details on our Minnesota initiatives. We are also working with the larger organizations, which are making a lot of great progress and awareness is increasing (thank you esp. to Jen Brea and Unrest). Did you happen to listen to the ME/CFS Symposium a few weeks ago – if you haven’t you may want to listen to a bit of it. It provided me with quite a bit of hope to hear about the research progress they are making. Nothing will change overnight, for sure, but I feel hopeful that change will happen.

    Please, please feel free to reach out to me if I can be of any assistance. I know what it’s like to live with this all-consuming disease. While I haven’t had it long compared to many, I have also found ways to make it work for me and ways to overcome some of the challenges it presents (though, as you know, that’s not always possible). We deal the best we can and that most definitely is enough.

    My best to you,

    Lisa Alioto

  5. Submitted by Christa Richardson on 10/16/2018 - 05:09 am.

    I have had what has been diagnosed as CFS for 25 years. Been through every stage from completely bedbound, to working and socializing in what I considered a ‘essentially remission”. Now I’m in a massive relapse with tragic family circumstances, and I’m unable to participate and be there as I need to.
    I’m certain it’s largely neurological. My worst days, when I take my sleep med, a strong one, before I go to sleep, all shmprtoms, even the most persistent and debilitating ones…. Are relieved.
    I have found no one well versed in or near MN besides a practioner that does not accept insurance and may or may not have my confidence. I’ve spent thousands on specialists and their gcmaf ($12k!!) And ketapressin, which is what ended my remission of many many years.
    I’d love to connect with others. I’m completely isolated and when days become months…. Well, some of you know!!!
    Christa

    • Submitted by Lisa Alioto on 10/17/2018 - 05:55 pm.

      Hi Christa,

      It’s great to hear from you though I’m so sorry to hear that you are in a massive relapse with family challenges also in the mix. My heart goes out to you.

      I completely agree with you about the medical provider options in MN (or lack thereof). We hope to change that and already have plans in place to start educating the future MN medical professionals. More to come! We are just getting started and are off to a very successful start.

      If you would like to email me (lisa.m.alioto@gmail.com) or or organization (mnmecfs@gmail.com) we will add you to our mailing list so you can stay up-to-date on new developments in MN when it comes to ME/CFS.

      Take care (hugs),

      Lisa

    • Submitted by robin caulfield on 10/26/2018 - 12:32 pm.

      Looking for person to person if able, talking on phone. I have days I feel better and would love to help others, sharing the hard days. I would love to share more but need to rest.

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