ME International Board of Directors
ME International Bylaws
Conflict of Interest Policy
2020 MEI Annual Report
JAMES LUTEY, President
Jim has been married to his wife, Pam, for 54 1/2 years. He is mostly retired, but does a lot of volunteer work including Rotary, HOA Board, bookwork for his son's landscaping business, Johnstown Milliken News, ME Action Colorado, ME International, as well as being a caregiver for his wife, Pam, who has ME. When Jim’s wife, Pam, became ill, she not only consulted many doctors, but in her research, found out about ME Action Colorado. That organization helped Pam and she and Jim became members of their Steering Committee. It was, and still is, the only organization in Colorado that provides some help to ME patients and that works hard on ME education and advocacy. Now, as a member of the Steering Committee, Jim does what he can as Outreach Chair for ME Action Colorado. Realizing that there wasn’t really an international ME organization, like the National MS Society for example, Jim and Pam founded ME International. Jim grew up in Nebraska and graduated from the University of Wyoming where he met Pam. He had a 32½ year career with the U.S. Fish and Wildlife Service. They moved 8 times, living and working in Montana, Oregon, S. Dakota, Washington, Missouri, Minnesota and Colorado. After retiring in Denver, he and Pam moved out of the city to Johnstown, CO. Both were co-executive directors of the local Chamber of Commerce and Jim was involved in the Historical Society and on Johnstown Planning & Zoning Commission. They have a marketing company and owned Johnstown Milliken News for several years. Jim is a generalist; always has been. He thinks it evolved from his childhood and early years. He liked to do a lot of things (fish, hunt, golf, taxidermy, fly tying, camping, etc.) and never really concentrated on any one thing to do it really well. “I was good at lots of things, but never an expert at any one thing.” So, in regard to ME International, he expects to be good at organizing and common sense, but not getting deeply involved in the details. He is pleased that ME International’s diverse board can cover the details. 
DAVID STECKEL, Vice President Currently living in Illinois, David Steckel is a Veteran who recently retired from the DoD. He has a BS in Aerospace Engineering and an MS in Engineering with a focus on Product Assurance. During his time with the USAF he held many positions, including Environmental Restoration Division Chief which led him to a second Masters degree in Bioregional Planning. Adding to his active duty time in the mid-70s, Mr. Steckel volunteered for a year’s deployment in Afghanistan where he served as the Base Master Planner at Bagram Airbase, putting him in charge of inventorying and assigning all land parcels within its 3,700 acre expanse. He is currently a volunteer/member of veteran-based nonprofits Team Rubicon and the Pamlico Rose Institute. To support his wife, who has had ME for 30+ years, David was on the board of May12.org from October 2015 to October 2019. Since leaving May12.org, he and his wife Colleen became involved in the development of ME-International. Creating an organization that promotes the International Consensus Criteria is very important to both of them as well as helping patients with ME know what they’re dealing with, and educating the government and the medical community to improve the quality of life for people with ME. |
MARY KELLEY, Treasurer
Mary Kelley lives in the very Southwest corner of Denver. She was born in Western Nebraska but moved to Colorado when she was 15 years old. She called the Palisade/Grand Junction area home for 34 years after moving there with her parents. Her career started with the IRS handing out tax forms as a seasonal employee in Grand Junction, moving into a clerical position and audit aide before becoming an auditor for 14 years, and ending her 27½ year career as an Office Audit Group Manager. After becoming an auditor, she was named to the National Teaching Cadre and traveled all over the United States teaching classes for the IRS. Mary moved to the Denver area in 2007 and retired in November of 2014.
Mary is an Enrolled Agent and started her own income tax practice in 2016. Her “fun” but sometimes trying job is ushering for the Colorado Rockies, last year working 55 games. The rest of her time is spent being a Grandma to eight Grandchildren, playing Texas Hold’em, traveling and being “mom” to her Havanese dog, Mr. Buttons.
Mary is honored to be part of the ME International team and looks forward to getting to know all of you and working with you.
Mary Kelley lives in the very Southwest corner of Denver. She was born in Western Nebraska but moved to Colorado when she was 15 years old. She called the Palisade/Grand Junction area home for 34 years after moving there with her parents. Her career started with the IRS handing out tax forms as a seasonal employee in Grand Junction, moving into a clerical position and audit aide before becoming an auditor for 14 years, and ending her 27½ year career as an Office Audit Group Manager. After becoming an auditor, she was named to the National Teaching Cadre and traveled all over the United States teaching classes for the IRS. Mary moved to the Denver area in 2007 and retired in November of 2014.
Mary is an Enrolled Agent and started her own income tax practice in 2016. Her “fun” but sometimes trying job is ushering for the Colorado Rockies, last year working 55 games. The rest of her time is spent being a Grandma to eight Grandchildren, playing Texas Hold’em, traveling and being “mom” to her Havanese dog, Mr. Buttons.
Mary is honored to be part of the ME International team and looks forward to getting to know all of you and working with you.
COLLEEN STECKEL, Secretary
Colleen is an ME patient with sudden onset in 1989 at age 29. She was originally trained as a legal secretary and then worked as an executive secretary which came to a halt due to severity of illness. ME drastically changed the course of her life and the lives of her husband and daughter. Early experiences with knowledgeable doctors who diagnosed her with CFIDS set the stage for good understanding of the reality of living with ME. Many bad experiences with medical professionals and friends and family who were misinformed showed the need for advocacy.
Having had periodic experiences with more severe ME and majority of the time as moderate or low moderate ME, she learned many tips on how to manage symptoms and improve quality of life. Colleen had been sharing information on how she managed her symptoms for many years prior to starting the North Carolina/Ohio ME & FM support group (public on Facebook) in 2014.
Colleen began advocating at a national level when she joined www.MEadvocacy.org. The mission of MEadvocacy is to Advocate for Recognition, Definition, & Research for Myalgic Encephalomyelitis as described in the International Consensus Criteria. Colleen continues her volunteer work at MEadvocacy and joining ME International is a natural fit for extending advocating for ME to an international level.
Interview of Colleen by Llewellyn King in April 2019.
Interview of Colleen by WNCT Greenville, NC 11 Feb 2019
Colleen is an ME patient with sudden onset in 1989 at age 29. She was originally trained as a legal secretary and then worked as an executive secretary which came to a halt due to severity of illness. ME drastically changed the course of her life and the lives of her husband and daughter. Early experiences with knowledgeable doctors who diagnosed her with CFIDS set the stage for good understanding of the reality of living with ME. Many bad experiences with medical professionals and friends and family who were misinformed showed the need for advocacy.
Having had periodic experiences with more severe ME and majority of the time as moderate or low moderate ME, she learned many tips on how to manage symptoms and improve quality of life. Colleen had been sharing information on how she managed her symptoms for many years prior to starting the North Carolina/Ohio ME & FM support group (public on Facebook) in 2014.
Colleen began advocating at a national level when she joined www.MEadvocacy.org. The mission of MEadvocacy is to Advocate for Recognition, Definition, & Research for Myalgic Encephalomyelitis as described in the International Consensus Criteria. Colleen continues her volunteer work at MEadvocacy and joining ME International is a natural fit for extending advocating for ME to an international level.
Interview of Colleen by Llewellyn King in April 2019.
Interview of Colleen by WNCT Greenville, NC 11 Feb 2019
PAM LUTEY, Board Member
Pam Lutey was born and raised in Lakewood, Colorado. She attended and got a teaching degree from The University of Wyoming and met her husband Jim at UW. She has moved 8 times from Colorado, Wyoming, Montana, Washington State, South Dakota, Oregon, Missouri and Minnesota and enjoyed every minute of it. She enjoyed being a teacher, a retailer and Co-Executive Director of the Johnstown Milliken Chamber of Commerce. She is currently in Rotary but is unable to attend meetings. She loves starting projects, like ME International. She is one of the lucky ones, getting ME when she was older. She has two sons, Bert and Paul and two grandchildren, Anton and Claire. She has lived the last 20 years in Johnstown, CO. She knows this organization is going to take time and it is wonderful to have such great volunteers. “We will just take each day as it comes and educate along the way.” She hopes that we might have a Foundation Fund to help those that need it the most.
When Pam became sick she tried to find out as much information as she could about ME. At the time, the only ME group in Colorado was Colorado ME Action. She tries to help as much as possible from home but is unable to attend events. She formed a small group on Facebook so they could get to know each other and help whenever possible. She made many friends in this group and they try to support each other and keep up to date about what is going on in Colorado. Pam didn’t join ME International, she founded it. It just seemed like ME should have an international organization like many other non profits.
Pam Lutey was born and raised in Lakewood, Colorado. She attended and got a teaching degree from The University of Wyoming and met her husband Jim at UW. She has moved 8 times from Colorado, Wyoming, Montana, Washington State, South Dakota, Oregon, Missouri and Minnesota and enjoyed every minute of it. She enjoyed being a teacher, a retailer and Co-Executive Director of the Johnstown Milliken Chamber of Commerce. She is currently in Rotary but is unable to attend meetings. She loves starting projects, like ME International. She is one of the lucky ones, getting ME when she was older. She has two sons, Bert and Paul and two grandchildren, Anton and Claire. She has lived the last 20 years in Johnstown, CO. She knows this organization is going to take time and it is wonderful to have such great volunteers. “We will just take each day as it comes and educate along the way.” She hopes that we might have a Foundation Fund to help those that need it the most.
When Pam became sick she tried to find out as much information as she could about ME. At the time, the only ME group in Colorado was Colorado ME Action. She tries to help as much as possible from home but is unable to attend events. She formed a small group on Facebook so they could get to know each other and help whenever possible. She made many friends in this group and they try to support each other and keep up to date about what is going on in Colorado. Pam didn’t join ME International, she founded it. It just seemed like ME should have an international organization like many other non profits.
JENNIFER CALDWELL, Board Member
Jennifer Caldwell lives in Hillsborough, NC, near the University of North Carolina-Chapel Hill and Duke Universities. Prior to suddenly developing ME in 2014, she worked as a Clinical Research Coordinator for 17 years. Unfortunately, her ME was so severe from day one that she was never able to return to work. As a single mom, she had to apply for disability benefits to survive. She found this process to be extraordinarily grueling to do on her own while extremely incapacitated, both physically and cognitively.
Due to the severity of Jennifer’s ME, she is mostly homebound and spends the vast majority of her time reclined in bed. While resting at home, she closely follows ME research and advocacy work. In doing so, she has forged some close friendships with others living with ME and they frequently offer support and tips to help each other manage this relentless disease and get through some of their darkest days.
As someone who always strives to further science, Jennifer participated in the NIH’s Intramural ME/CFS study and developed a good rapport with the clinical PI and study staff after two inpatient stays there (9 days in April 2017 and 5 days in June 2019). Note: The NIH study does not offer treatment. It is strictly a research only facility.
Jennifer tried hard to find acceptance after living with ME for almost 5½ years; but, averaging around 15-20% of pre-illness function has made this quite challenging. She would love a consistently helpful treatment regimen that offers greater functionality; but knows that this is not likely to happen without research advancements, raising public awareness, and properly educating patients and physicians. This, in turn, will empower people with ME as they try to navigate the many roadblocks the current system creates making it extraordinarily difficult to find knowledgeable doctors and get the proper support and care ME patients so desperately need and deserve.
Even though she has limited time and energy, she hopes her unique professional and patient experience allows her to provide valuable insight and information to ME International as the organization works together to positively influence the current landscape for those living with ME.
JANET FLYNT, Board Member
The mission of MEI provides a new, positive, and complementary energy among the ME Advocacy groups. Janet believes that culling the best from US and international perspectives and experience will lead to earlier and better diagnosis and therapy for ME patients.
Prior to joining MEI in 2020, Janet has supported the work of Solve ME/CFS, by participating in the annual US Congressional ME Advocacy day for the past three years.
Janet was a professional high integrity software specialist, manager and advocate with a passion for entrepreneurship for 30 years. Her career focused on developing and applying product and process software integrity within larger organizations (IBM, RTI International, UL). She has worked on and managed NASA, DoD, NIOSH, and commercial projects. Project requirements included traveling throughout the USA and to Canada, England, Germany, Austria, Italy, and Japan to accomplish project objectives. These projects included presenting and debating at international conferences and standards committees.
She holds a BS in Mathematical Sciences (UNC/CH-1976) and a MS in Operations Research and Systems Analysis (UNC/CH-1978). Her education continued throughout her career with highlights including attending the NATO Advanced Studies Institute in Electronic Systems and Life Cycle Costing (1981), Program for Technology Managers (UNC/CH-1991), and NC Council for Entrepreneurial Development (2002-2003).
Life intervened for Janet in 2001 when she was diagnosed and successfully treated for Breast Cancer. In 2002 she decided to live her entrepreneurial dream and started a small business Safety Requirements, Inc. The business focused on helping manufacturers comply with product safety requirements in different jurisdictions. Safety Requirements also developed web apps and training to streamline their compliance efforts.
Around 2003 after hysterectomy surgery and the need for blood packs, Janet’s primary care physician diagnosed her with chronic fatigue. With her physician’s support, Janet sought effective treatment by different medical specialties for more precise diagnoses and treatment. In 2006 she was diagnosed by Dr. Lapp at Hunter-Hopkins (HH) confirming CFS and adding Fibromyalgia. Subsequently HH diagnosed her with moderate ME using the ICC.
The exhaustion caused by ME led to her closing Safety Requirements in 2009 and seeking SSI which was awarded. Her only option was to rest and focus totally on managing her health through self-care and learning about the disease. This was a very traumatic life transition for her with a waxing and waning hope of disease recognition and development of effective therapies. She refers to this period as being a hermit and going through a dark night of the soul. If it wasn’t for her “5 Borzoi and a Boxer” rescues she doesn’t know if she would have made it. Her long term career motto of “there has to be a better way” helped carry her through the loss and accept the present with all its attendant difficulties.
HEATHER SECKINGER, Board Member
For over 25 years Heather Seckinger has been a survivor of ME, having been diagnosed at 15 years old. Being located in Camarillo, CA (a suburb of Los Angeles) allowed for an early diagnosis and led to a great understanding of the disease.
Her life has been severely disrupted. After having to be home schooled in high school, she went on to achieve a degree in History from CSUCI with a lot of determination on an extended timeline. What working career she’s been able to have, has been devoted to children.
Unfortunately the last 5 years she’s found herself bed-bound for most of her days. She spends a good portion of her time helping others understand this disease and alleviating fears. She keeps her brain active by participating in many Facebook groups and admins for groups like Myalgic Encephalomyelitis Global and a few others including “Loving someone with ME,” specifically for carers and supporters, which is of particular interest to her.
She’s been truly inspired by all the lives interrupted and is devoted to changing that. To the Board she brings enthusiasm and a deep desire to help her fellow warriors.
