Advocating for ME-ICC in Washington, DC

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It has been 50 years since the World Health Organization classified myalgic encephalomyelitis (ME) as a neurological disease in 1969. Thirty plus years of misinformation about the harsh reality ME patients face has led to a crisis of grossly inadequate patient care. For decades patients have dealt with doctors who were given inaccurate information leading to denied disability claims and blaming patients for their symptoms.

MEadvocacy was created to promote and educate for the distinct disease myalgic encephalomyelitis, including severe patients. The key to getting proper recognition and proper care in any disease is a clear description. Judging by what we are witnessing from the NIH and CDC, we have a long way to go before ME is properly recognized in the US.

Interview with Llewellyn King

On April 3, 2019, ME advocate, Colleen Steckel sat down with Llewellyn King at the National Press Club in Washington, DC, to talk about the importance of using proper criteria and name to define the disease myalgic encephalomyelitis (ME).  

The 2011 experts’ criteria - the International Consensus Criteria (ICC) - was created for clinical and research purposes to 60292627_2731296166896961_3770582596958814208_n.jpgdistinguish ME from the demeaning fatigue syndrome coined “CFS”.  Colleen pointed out the weaknesses of the government-sponsored “SEID” definition created by the Institute of Medicine (IOM), and how it is too broad, including many who do not suffer from ME.

From the interview:

8:47 -- Collating all these treatments

“And in looking at the IC Primer, it gives the doctors a really good basic understanding that helps them understand why.. why we need vitamin E, why we need lots of C, all of the anti-oxidants, because they understand we have oxidative stress…

Just that basic one-on-one understanding with our doctor, could make a huge impact on all of the patients who walk into the doctor’s office looking for some kind of help."

15:56  Need for younger doctors to become interested in treating/researching ME

“Well, if the [ICC] information was on the CDC website that specifically included some of the specifics of the immune dysfunction and the neurological changes and the cardiac, the cardiology issues. I think doctors would go ‘this is a real interesting combination of [symptoms] and I could really have an impact here.’ ”

Colleen also shared information about our organization, MEadvocacy.org, and how we have not wavered from our mission to advocate for the proper name and criteria (ME-ICC).  

You can see the video here:  https://www.youtube.com/watch?v=VqM_OUf0fBk&feature=em-uploademail&fbclid=IwAR0q7QlIetolRM4etSUZtIRWdLbMsVI07OmH5naqamAZPBap3MNagCQUAx8

Attending the NIH Conference

On April 4 and 5, Colleen then represented MEadvocacy at the NIH conference “Accelerating Research on ME/CFS”.

The NIH conference was not geared for someone with Colleen’s level of illness severity. She suffers from various sensitivities which are common in the ME community. She is in a wheelchair and while getting to and from the conference was handled by her VERY supportive husband, it was a lot of work.

The conference itself was in an auditorium which was mostly darkened with a good sound quality for the audience. 60350137_2731296560230255_4005561490378588160_n.jpg

Unfortunately, the wheelchair slots at the back were often taken by people who didn’t need to be in that area leaving those wheelchair bound sitting at the back of the auditorium. Something in the room made Colleen’s throat itch, so she wore a medical mask most of the time.

Other distractions made the venue challenging, including a flashing green light from a malfunctioning unit on the upper right-hand wall and people talking at the back of the room. While it would be impossible to put on a conference that is completely ME friendly, understanding the issues specific to those disabled by ME are important when putting on an ME conference.

Colleen had the opportunity to meet and speak with others gathered at the conference 

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including David Tuller and Marilyn Simon of Open Medicine Foundation 

Colleen felt disheartened to see a lack of awareness by many in attendance about the ICC. While that was an unpleasant surprise, the exchanges she had sharing ICC materials brought about “aha” moments for some who have now signed the #PwME4ICC petition urging HHS to adopt the ICC for ME.

Those who have experienced ME, when shown the ICC, quickly see it is a very good description of the disease and come to understand the IC Primer can be used as a tool to bridge the gap between patient and doctor.

On day one and two, Colleen asked questions that focused on the importance of stratifying patients as well as being clear in research papers on the symptoms that could be associated with the area being studied.

Day 1 question clip: https://youtu.be/K3rOVGwiJZs

Day 2 question clip: https://youtu.be/4ixSDzJCF90

The entire conference can be seen at the following links.  (Her questions can be found at the timestamps shown).

Day 1 at 6:29:22 https://videocast.nih.gov/summary.asp?live=31636&bhcp=1

Day 2 at 7:20:53 https://videocast.nih.gov/summary.asp?live=31640&bhcp=1

In Dr. Montoya’s response to Colleen’s question on day two, he talked about a document in the works from ME experts who have been in the field for decades. The IC Primer is a consensus guide created in 2012 by doctors who have diagnosed and/or treated more than 50,000 patients who have ME, have more than 500 years of clinical experience and approximately 500 years of teaching experience.  Dr. Montoya went on to point out that a document created by doctors by consensus is considered evidence. He basically makes the case for adopting the International Consensus Primer.

Clarification regarding the question Colleen asked which included the CCC and SEID. Colleen and the MEadvocacy advisory committee feel the ICC and IC Primer is the only effective tool for clinicians to fully understand the full breadth and depth of ME.

During several of the presentations, the importance of stratifying patients for treatment and research was brought up.  Dr. Montoya asked Ian Lipkin from Columbia University if they had separated out the severe patient group in the results from his latest study.

Dr. Lipkin responded, “no”.  To which Dr. Montoya thanked him for his eloquent response. The exchange brought a laugh from the audience. Dr. Montoya followed up asking him to please separate out the severe patients in the results.

The main take away from attending the conference is that a focus on research into the more severe patient group, including utilizing the ICC to select patients, should be a primary focus of any future conference on myalgic encephalomyelitis.

Links Mentioned in Interview

Link to the #PwME4ICC Petition Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC: https://www.change.org/p/the-us-department-of-health-and-human-services-cdc-adopt-the-distinct-disease-myalgic-encephalomyelitis-me-as-defined-by-icc-now

ICC Questionnaire English: https://bit.ly/2OkLIav

ICC Questionnaire Spanish: https://bit.ly/2UAWy3o

ICC Questionnaire Dutch: https://bit.ly/2VBsCkA

Comparison Chart between ME-ICC and ME/CFS-SEID: https://bit.ly/2unX06N

Blog: MEadvocacy Opts Out of CDC’s Technical Development Workgroup

https://www.meadvocacy.org/meadvocacy_opts_out_of_cdc_s_workgroup

Email: MEadvocacyorg@gmail.com

Facebook: https://www.facebook.com/MEadvocacy.org/

Twitter: https://twitter.com/meadvocacy_org

May12.org: www.May12.org