ME/CFS and EHS – The Struggle for Research and Recognition

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•unseen and overlooked by society and the medical community
•systemic lack of recognition

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Electrohypersensitivity (EHS)
Both ME/CFS and EHS are chronic health conditions that profoundly impact individuals’ lives. Yet, despite their debilitating effects, both remain under-researched and misunderstood, leaving many without proper care or recognition.

Shared Challenges
Impaired Functioning: People are not able to function the same way they did before they became ill.
Impact on Daily Life: Employment, social and family life are affected.
Long-Term Chronic Effects: It can last for years and may lead to a serious disability.
Mental Health Misconceptions: Often dismissed as psychological in origin.
Lack of Support: Limited healthcare access and research.

These conditions are challenging to diagnose due to the lack of specific tests. While ME/CFS has received more research attention and has established diagnostic guidelines, EHS lacks similar clarity.

Historical and Ongoing Medical Dismissal
ME/CFS has had a long and complex history in terms of medical recognition, especially regarding its classification as a physical versus a mental condition. The shift from viewing it as primarily psychological to recognizing it as a physical illness occurred gradually and varied by country and medical organizations.

Today, ME/CFS is recognized as a legitimate physical illness by major health organizations, including the CDC, the NIH, and the WHO. However, challenges remain regarding diagnosis, treatment, and public perception. Healthcare access is still limited, and many in the medical community rely on outdated information. In some cases cognitive behavioural therapy and graded exercise continue to be prescribed for ME/CFS even though these treatments have been shown to worsen the condition.

Similarly, the WHO continues to recommend that treatment for EHS should exclude addressing the person’s “perceived” need to reduce or eliminate EMF exposure at home or in the workplace. This recommendation may be putting people at risk. **Please see the disclaimer at the bottom of the post.

The tragic case of Maeve Boothby O’Neill
Maeve Boothby O’Neill’s death serves as a stark reminder of the harm caused by discredited views on ME/CFS.
As journalist George Monbiot asks, “How was this allowed to happen?”
https://www.theguardian.com/commentisfree/2024/oct/18/maeve-bothby-oneill-me-chronic-fatigue-syndrome

Care for people with severe ME is “nonexistent,” says coroner in call to action.
The hard hitting prevention of future deaths report by assistant coroner Deborah Archer on the death of Maeve Boothby O’Neill, 27, also highlighted the lack of research funding, training, and guidelines on treating ME. https://www.bmj.com/content/387/bmj.q2202

The Struggle for EHS Recognition
Similar to ME/CFS, efforts to gain recognition for Electrohypersensitivity (EHS) as a legitimate physical illness is ongoing. Dismissive attitudes, such as those expressed by the 2020 Chair of ICNIRP, negatively impact how the medical community, research funders, and regulatory bodies perceive the condition. Dismissing or ridiculing individuals with EHS is not only cruel and disrespectful but also poses a real threat to public health by undermining the seriousness of the condition and stalling research efforts.
https://www.emfsa.co.za/ehs/icnirps-chair-rodney-croft-electrohypersensitivity/

Professor Croft is a member of ICNIRP’s Scientific Expert Group https://www.icnirp.org/en/about-icnirp/scientific-expert-group/index.html

Call for Multidisciplinary Research
In our experience, it is common for individuals to exhibit symptoms of both EHS and ME/CFS, often due to heightened sensitivity to environmental factors. This overlap underscores the urgent need for global, multidisciplinary research efforts. Well coordinated studies and the development of effective solutions should be prioritized as part of public health initiatives to improve the quality of life for those affected by these conditions.

The WHO should recognize EHS as a probable health impairment to stimulate the currently stagnant, but urgently needed, research on individual sensitivity to RF-EMF” Dariusz Leszczynski, PhD, DSc. Adjunct Professor of Biochemistry, University of Helsinki, Finland, and Chief Editor ‘Radiation and Health’, Frontiers in Public Health, Lausanne, Switzerland; https://betweenrockandhardplace.wordpress.com/wp-content/uploads/2024/10/final-leszczynski-poster-ehs-diagnosis.pdf

We thank Dave Ashton from UK Electosensitives for his input.

** Disclaimer: EMFSA is a radiation protection consultancy, offering advice and services to
assist individuals reduce EMF exposure in their homes and workplaces.

References
Ref. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, Military Medicine, Volume 180, Issue 7, July 2015, Pages 721–723, https://doi.org/10.7205/MILMED-D-15-00085
CDC https://www.cdc.gov/me-cfs/about/index.html
NIH https://www.nih.gov/mecfs/about-mecfs
WHO https://www.who.int/standards/classifications/frequently-asked-questions/chronic-fatigue-syndrome

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