Due to the hard work of Jim and Pam Lutey, Rotary International Board is considering a proposal to encourage research, education and funding for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). MEadvocacyOrg appreciates the advocacy efforts of the Luteys who initiated this proposal through their local Rotary in Colorado. Read about the proposal and what adoption by Rotary could mean for ME patients.
Clarification About MEadvocacyOrg’s Position
MEadvocacyOrg advocates for recognition, definition and research for ME as defined by ME experts, for use of the term myalgic encephalomyelitis and rejects the confusing term ME/CFS.
While our advocacy is focused on using the original name, myalgic encephalomyelitis, the Canadian Consensus Criteria (CCC) that originally held the ME/CFS label is recognized as viable for research criteria for myalgic encephalomyelitis. When ME/CFS is used in reference to the CCC, this applies to ME.
Unfortunately, since 2015, “ME/CFS” in the US has been used to refer to systemic exertion intolerance disease (SEID) which encompasses patients not directly related to the disease seen in the outbreaks that led to the label ME. This has caused harmful confusion about ME. Because of this confusion MEadvocacyOrg only uses the term ME.
This Rotary resolution recognizes the close connection to various enteroviruses which are a suspected factor in ME, as referenced in the International Consensus Criteria (ICC), including the polio virus which is also a type of enterovirus.
MEadvocacy views ME/CFS in this resolution as referring to the CCC which was written by many of the same experts who wrote the ICC and the International Consensus Primer.
The Rotary Resolution
To request the RI Board to consider collaborating with those working on myalgicencephalomyelitis/chronic fatigue syndrome research - Proposer(s): Rotary Club of Greeley-After Hours, District 5440, USA. Endorsed by District 5440 through an annual district conference, Gering, Nebraska, USA, 18 May 2019.
“WHEREAS, the virus that often triggers myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is closely related to the virus that causes polio, and
WHEREAS, an estimated 15 to 30 million people worldwide, predominantly women, have ME/CFS, and
WHEREAS, government and organizational funding for research and education to recognize and treat ME/CFS is woefully inadequate
IT IS RESOLVED by Rotary International that the Board of Directors of Rotary International consider using the vast knowledge and resources Rotary has already developed and implemented to eradicate polio for the support of, encouragement of, and collaboration with those working to fund myalgic encephalomyelitis/chronic fatigue syndrome research and education. (End of Text)
PURPOSE AND EFFECT
This resolution would leverage Rotary’s worldwide reputation and expertise on polio eradication to raise awareness of the need to educate the public and medical practitioners on the importance of treating and ultimately finding a cure for those suffering from ME/CFS.
If implemented, this resolution would have a financial impact on RI which cannot be determined at this time. Cost would be dependent on the scope and extent of support provided by the RI Board for collaborating with those working on ME/CFS research.”
Note: An earlier version has been circulated and posted in other articles. This is the updated official version.
What is Rotary International
“Rotary is a global network of 1.2 million neighbors, friends, leaders, and problem-solvers who see a world where people unite and take action to create lasting change – across the globe, in our communities, and in ourselves.” https://www.rotary.org/en/about-rotary
JIM LUTEY SHARES HOW RESOLUTION CAME ABOUT
Jim’s wife, Pam, developed ME in December 2016. Since then they have been researching the disease. In August 2018, Jim made a powerpoint presentation to his Rotary club (Greeley After Hours, Colorado) about ME. In Jim’s own words:
“I am a Rotarian and when I was with the Greeley After Hours Rotary Club in Greeley, Colorado, I proposed a resolution in September 2018 that our board of directors and club members supported. I then worked with our Council on Legislation designate (Mike Forney) for our Rotary District 5440 (Wyoming, part of Idaho, part of Nebraska, and north central Colorado). We worked on a resolution in March and April 2019 that was presented at a District 5440 Conference in May 2019.
Rotary club delegates at the conference unanimously voted to approve the resolution at their business meeting. Then, the resolution was submitted from our District Governor (Chuck Rutenberg) to Rotary International in early June 2019. Resolutions submitted by Rotary clubs and districts will be voted on by each Council on Resolution delegates from 535 districts worldwide between October 15 and November 15, 2019. If the Rotary resolution is approved by these delegates, then it goes to the Rotary International (RI) board of directors for consideration. We have come a long ways to get it to the RI level, but a couple more hurdles to go.” ~ Jim Lutey
Jim & Pam Lutey at a Rotary function
BREAKING DOWN THE RESOLUTION
WHEREAS, the virus that often triggers myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is closely related to the virus that causes polio, and
Many respected doctors and researchers over the years have pointed to the connection between ME and non-polio enteroviruses.
The study titled Myalgic Encephalomyelitis a Persistent Enteroviral Infection?, by E.G. Dowsettl, A.M. Ramsay, R.A. McCartney and E.J. Bell from 1990 discusses the enterovirus connection. From the conclusion:
“Clinical, laboratory, and epidemiological data support the suggestion that ME is a complication in non-immune individuals of widespread subclinical NPEV [non-polio enteroviruses] infection.”
The recent paper Quantitative Electroencephalographic Assessment of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Support for a Novel Diagnostic Protocol by Andrew E. Pellegrini Laurentian University states:
“It appears highly likely that the vascular cuffing phenomenon arising from enteroviral infection in poliomyelitis and it’s associate ME in the early part of the last century remains alive and well in the world today with the latter enjoying the benefits of being overlooked or conflated with the nonsensical CFS definitions and their offspring by the general medical profession.”
WHEREAS, an estimated 15 to 30 million people worldwide, predominantly
women, have ME/CFS, and
While there is a great deal of controversy about the number of people affected by ME, MEadvocacyOrg has stated that there are 1 million affected in the US and 17 million worldwide for several years which also includes children and men. Until the confusion about diagnosis is resolved, these prevalence numbers are recognized as a reasonable guess based on studies done around the world.
WHEREAS, government and organizational funding for research and education
to recognize and treat ME/CFS is woefully inadequate
Everyone in the ME community agrees that more education is needed and the current approach to funding ME research is woefully inadequate.
NOTE: The IC Primer lists several other possible infectious agents associated with ME including enterovirus, epstein barr virus, human herpes virus (HHV 6 and 7), cytomegalovirus, parvovirus B19, as well as bacteria such as chlamydophila pneumonia, mycoplasma and coxiella burnetii.
How Could This Impact Patients
Rotary’s mission includes combating various diseases. From their website:
“Our members combat diseases like malaria, HIV/AIDS, Alzheimer’s, multiple sclerosis, diabetes, and polio. Prevention is important, which is why we also focus on health education and bringing people routine hearing, vision, and dental care.”
Getting this same kind of attention directed at pwME would have a profound societal impact.
Even if the proposal does not go through, this is a unique opportunity to educate millions of Rotarians about the devastating nature of ME. This is an avenue to help the wider community see that ME requires similar research and support given to other diseases like polio, AIDS, MS, etc. Rotarians have the ability to bring the invisible into the spotlight.
What You Can Do:
- Contact your local Rotary group.
- Let them know how you are connected to ME.
- Educate them about the proposed resolution.
Offer to share information about ME.
Information to share can be found at www.MEadvocacy.org/resources.