The tool, the means, the target

Posted: 25 January 2023

The Spanish translation of the IC Primer in front of a sign reading "Achucarro - Basque Center for Neuroscience".

As with our metabolism and our thoughts, Myalgic Encephalomyelitis also slows down our actions. It was 2016 when I started understanding what M.E. was and it happened to be by chance that I came across the International Consensus Primer. It shocked me! Firstly, to find out so much had been written about an illness that supposedly had not been researched enough and, secondly, to acknowledge that there is no document like this in Spanish and that all published documents for health policies and management delve into the idea of myalgic encephalomyelitis being a somatoform disorder.

A pandemic had cornered us in 2020 so it took a team of volunteers, Dr. Orrantia, Dr. Ortega, María José Moya and myself, two years to translate, edit and layout, and finally finish and print it. It was with the encouragement of Colleen, David, Jim L. and Suzy from ME International that we finished the translation and had Dr van de Sande’s (coauthor of the IC Primer) permission to publish it. Their supporting messages made all the difference in a small and sluggish world full of difficulties.  (Learn more about the translation of the Spanish ICP AQUÍ.)

At ME International they understand how important this document is for the overall ME community, both for empowering patients in their advocacy efforts and for enlightening health practitioners about ME. It is kind of funny that it is the latter that needs to go through an enlightening process.

Last December MEI funded 40 printed copies of the translation of the Folleto del Dr. and the ICPrimer (el Manual). These are being handed in person to key health practitioners and researchers from Euskadi’s main public and private hospitals: GPs, internists, rheumatologists, pharmacists, ER staff and neurologists. In sum, we are reaching out to professionals that are open to listen and to learn about this hidden pathology.

It could be seen as minimal action, which may be true, but it’s not inaction. If I look back, during these last 5 years there has been a little change. Initially, the work I had to do to understand ME, its history and the IC Primer allowed me to empower other patients.  These patients later worked on our behalf. We’ve put experts in contact with each other, which has helped bring about some research, as well as a few GPs seeing us with fresh eyes.  Some pwME (people with M.E.) are receiving helpful treatments like LDN, few others getting treatments with IVIG as well as other treatments mentioned within the IC Primer.

The small successes achieved individually by each pwME weave an invisible net that is improving our Health System’s attention. It’s not much, but it’s a change and we are part of it, with the IC Primer as the nucleus.

I consider the IC Primer the best tool to be used in an advocacy effort to achieve health equity.1 The IC Primer brings both knowledge and hope for a better future. Maybe not what we long for, a cure and our previous lives back, but at least a more dignified way of living with this illness… in the meantime.

Ona Albizu, PhD MSc BD
Medical Education Committee, ME

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