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Tortoise & Hare Reflections

An open letter from Lucinda Bateman MD

CindyAs many do, I spent some time over the holiday break reflecting on the past year and making new goals for 2016.

Although 2015 started out on an emotional high with the release of the IOM report and new clinical diagnostic criteria for ME/CFS, what followed was a period of disappointment and uncertainty, largely around the new name recommendation, but also because there wasn’t a clear response from the federal agencies.  Progress seemed stalled.  Meanwhile, in the spring I was diagnosed with Stage 1 breast cancer, underwent surgery in June and daily radiation treatments throughout August.  My mother was battling a disfiguring cancer on her face.  One of the providers in my clinic left for a job with better pay, and we were also buried in the numerous administrative changes necessary to transfer finances and administrative responsibilities from a small business model to a non-profit organization, the Bateman Horne Center. Slow and steady was the key. Patience and persistence. The year ended with a BHC fundraising push—a task far outside my comfort zone.  It’s not my style to ask for help.  Never was rest and relaxation more needed than the end of 2015.

tortoise

Things feel different in 2016. The change actually started in late October with the press release by the NIH Director, Francis Collins, who validated ME/CFS and made a commitment to support research. (Read more HERE.) I’ve had many opportunities to interface with federal agencies in the last 10 years, and this announcement is unprecedented.  Wheels are turning.  Progress will come.

I’ve been a tortoise alongside my patients for 20 years, modeling patience and persistence. Now, while those who are ill must of necessity maintain turtle pace, it is time for researchers and clinicians to pick up the pace as hares, only this time the hare and the tortoise will rewrite the fable’s ending. The hares will carry the tortoises toward the finish line. The race is for ME/CFS biomarkers. Hare_cary_tortoise

So as 2016 is getting started, I’m ready to roll up my pant legs and run the race with the persistence of a tortoise and the speed and stamina of a hare.  How will I prepare?

First, I vow to wear wild socks until useful biomarkers are discovered.

CrazySocks

Why wild socks?  A symbol of support for ME/CFS patients.  Weird compression socks are worn by people with POTS and orthostatic intolerance.  Weird wild socks are worn by people with confidence and enthusiasm.

All who dare—-wear wild socks!wearing socks

Second, I will cut off my hair.  I’ve cut my long hair off only twice before—first after college when I departed for 18 months in Southeast Asian refugee camps, and then after medical school graduation when I began internship and residency.   It’s time again. Stay tuned…

 

I’m ready to chart a new course and win the race together. Join me.

CindySignature

30 Comments

  1. Laurel on January 15, 2016 at 4:08 pm

    I think this will be the year where the culmination of many things that have been going on will come together. I feel more hope for progress than I ever have.

    I love the socks! They really make a statement. Are you going to donate your hair?



    • Dr. B on January 17, 2016 at 9:14 pm

      I’ll definitely donate my hair.



    • Dr. B on January 20, 2016 at 9:26 pm

      yes I will donate my hair!



  2. Clark Ellis on January 15, 2016 at 5:05 pm

    I didn’t realise you had had to contend with cancer last year, on top of all the good work you achieved, you obviously had a challenging year. I hope you have a healthy and prosperous 2016 – I long for biomarkers! – and thank you for making your wild socks commitment for us.



    • Dr. B on January 17, 2016 at 9:15 pm

      I long for biomarkers too!



  3. Katherine Reynolds on January 15, 2016 at 5:08 pm

    Thank you for all that you do. Love the socks idea. I’ve been a proud wearer of weird socks all my life. I’d rate myself moderate as someone who worries very much about our severe patients. I have discovered that toxic mold and other biotoxins/ environmental gunk is what threw me into M.E./CFS and CIRS. I claim to have both, refusing to separate the two. Good luck. We are poised to make great progress. I’m a half glass full kind of gal and I feel a shift coming too. Onward. And I think you will look great with short hair.



    • Dr. B on January 17, 2016 at 9:17 pm

      The next push will be for the severely ill. Their journey may teach us what we need to know.



  4. Cynthia McCoy on January 15, 2016 at 5:09 pm

    So sorry to hear of your additional health problems this past year. But I am encouraged to hear of the NIH response to ME/CFS–I do feel a bit bereft, though, when there is no mention of Fibromyalgia (although I do see a mention at the head of this comments section which makes me feel better!). People like me cling to Bateman Horne like a bobbing branch in a flash flood. I no longer really expect to be rescued, but signs of life on the shore are appreciated!



    • Dr. B on January 17, 2016 at 9:18 pm

      Don’t worry! We haven’t forgotten FM.



  5. Kathleen on January 15, 2016 at 7:14 pm

    Dr. Bateman and staff, I love and appreciate all the hard work and effort you put forward to help and find a answer to CFS/ME. You give me help and hope. Thank you and best wishes for 2016! Kathleen



  6. Myra Gish on January 15, 2016 at 7:39 pm

    Way to go! You are an inspiration!



  7. Jo Ann Somers on January 15, 2016 at 8:59 pm

    I am overwhelmed by your personal and professional support. Only you and my husband understand what I go through every day. I have no Dr. who even comes close to knowing what my life is like. I too will wear wild socks, on the days that I wonder if I can get out of bed and know that I must or I may not be able to. I will look down at my wild socks and smile or even laugh knowing that you will be wearing fun socks too. Maybe some day I will be lucky enough to have you be my physician in person.
    Jo Ann



    • Dr. B on January 17, 2016 at 9:19 pm

      Maybe some day you won’t need a physician like me! 🙂



  8. Kimberly Deneris on January 16, 2016 at 7:20 am

    I am so very sorry to hear of your struggles with breast cancer, and of your mother’s cancer as well. May you both regain your health and be found cancer-free in 2016.

    It seems that the IOM report has resulted in a seismic shift in the landscape for ME/CFS patients, and I am feeling very hopeful about our future. I also love your wild socks, and I’m going to wear wild socks myself until biomarkers are found!

    Wishing you the very best of luck in 2016 and sending positive energy to you and your mother.



  9. Sheri Houston on January 16, 2016 at 11:19 am

    I am so sorry to hear of your recent health challenges. I had no idea you were struggling with breast cancer. I hope you recover quickly and without complications. I and so many others, really appreciate all the tireless effort you give to help patients with Fibro/CFIDS lead better, more productive and happy lives. You have been and continue to be a shining light and example of positive thinking, perseverance and someone who follows their dream and go after it! The Bateman Horne Center is a wonderful part of all of our future! Thanks for making it happen! Blessings!



  10. Bottsie on January 16, 2016 at 5:36 pm

    I will join you in wearing the wild, weird socks! In college, I had some fuzzy maroon knee-highs that I called my gorilla legs. Wish I still had those! 😀 And…cut the hair!! It is so freeing!! I originally shaved my head to honor a cousin who was going through intensive chemo. She has since passed, but my hair is still very short. It is SO much easier to take care of, which is a huge plus with this disease. WHEN treatment/cure comes, I will keep my hair short. I won’t have time to waste with trivial things like hair upkeep. I’ll be making up for lost time! Looking forward to your pics. 😉



    • Dr. B on January 17, 2016 at 9:20 pm

      Inspiring. Thanks.



  11. Linda Milne on January 16, 2016 at 6:32 pm

    Holy Cow. I hadn’t realized I was so far out of the BHC loop. Dr. B, you looked radiant when I saw you at the clinic on Friday 1/15. I had no idea what you had experienced last year with your own health. I hope you are well now. I’ll get me some wild socks, too. On the days I can’t wear them, maybe I’ll slip them on at bedtime. Much to recommend about short hair, but don’t be surprised if it is a lot more work than long hair in a pony tail. Much love and appreciation.



  12. Laurel Weaver on January 18, 2016 at 8:01 am

    Thank you so very much for all you do. Please take care of yourself. Love the socks!



    • Dr. B on January 20, 2016 at 9:27 pm

      Will do!



  13. Janeen Costa on January 18, 2016 at 9:58 am

    Lucinda Bateman is the best doctor I could hope for in treating my ME symptoms. I am pleased to see the direction her practice is going, as I trust her implicitly. I am so sorry to hear about the cancer and glad she is feeling well now…. but cut her hair??? It is so beautiful already, but I suppose it will be no matter what.



    • Dr. B on January 20, 2016 at 9:28 pm

      Thanks…hair is only dead cells 😛



  14. Laura Newlon on January 19, 2016 at 8:14 am

    So sorry for all you went through last year. Glad you are doing better, I am with you in 2016 being a better and more productive year. I have had me cfs for 22 years now. I was bedridden with a very severe case. My Dr was talking about a feeding tube I started holding my own then very slowly improving. But still mostly homebound and spend a lot of time in bed. But still improvement, would love to see more this year. Thank you for all you do. God bless you.



    • Dr. B on January 20, 2016 at 9:29 pm

      Thank you. We–all–many– go through a lot. Let’s join our combined forces for good and push for biomarkers and treatments!



  15. Kristina Henson on January 19, 2016 at 2:47 pm

    Wow – Dr. Bateman you have been through so much! Sorry to hear about your health struggles as well as your Mom’s. You are a fierce warrior and I am so grateful to have you on our side. Thank you for all that you and your team has done for us and continue to do everyday.

    Best of health in 2016 – can’t wait to chart this course with you!



    • Dr. B on January 20, 2016 at 9:30 pm

      Let’s do it!



  16. Sara on January 20, 2016 at 3:06 pm

    Dr. Bateman,
    I have not met you in person, but somehow you are my friend on line. I am in Awe of your giving nature and your positivity. It gives me hope. I am one of those moderate to severe who can only be out of bed a few hours a day and some days, it’s worse. I was a Fibro/ CFS patient for many years and after a FLU 2 years ago. I am definitely a ME patient. I’ve experienced all three Fibro/ CFS and now ME….and there is a difference. Bio markets are good, but we need solutions and desperately need our doctors to understand us. Please take care of yourself. We need you! Love and Peace.
    Sarika Narula-Patel



  17. Tamera Gates on January 20, 2016 at 4:37 pm

    Today I was blessed to be able to go outside for a few minutes for some fresh air. My heart wanted to stay outside and walk, run and skip but my illness quickly brought me back inside to rest and recover. My weakness and absolute fatigue from my adventure outside brought me both sadness for days and health lost as well as hope for more days outside in 2016. Your post gave me hope and courage to face this illness and another day. I will wear my weird socks with pride and in honor of others around the world with this illness as well as those that run the race for us. Thank you!



  18. Bradley Baker on January 23, 2016 at 8:45 pm

    Dear Dr. B. Thank you so much for all that you do. Sometimes it is easy to forget that everyone has health and living issues (not just me) I thank you for your strength and dedication. I have not kept up with the research efforts for the last few years, but the announcement of your new facility and your efforts give me the boost I need to “keep on truckin’ “. If I can be of any assistance- sample donation, study group participant, genius at large (with poor memory and mental (fog)). Please get in touch. Seriously, thank you from the bottom of my heart. Sincerely, Brad Baker



  19. Lisa Clark on January 24, 2016 at 11:49 pm

    I too am sorry for your health problems with cancer as well as your mom’ s and sister before that! Thank you for your years of study and help for so many. You have been so good to me and my mother. I’ve been really discouraged lately so thank you for your strength and kindness.. and example! See you soon! Lisa