ME/CFS Is it really elusive evidence?

By SWA

Governments, researchers, medical professionals, and society must refrain from presuming and unfairly suggesting that symptoms are imaginary simply because evidence is elusive.
The issue often lies in limited knowledge and reliance on standard testing, which may not be comprehensive due to insurance constraints, thereby hindering the discovery of underlying causes.

ME/CFS, an illness recognized globally, has unfortunately been subject to opinions rather than solid evidence. In clinical settings, diagnoses can be accurate or erroneous; they should not be seen as definitive, as gaps in knowledge can lead to misinterpretations and treatments that might cause further harm. Other potential illnesses, such as muscle weakness, exhaustion, memory impairment, and pain, have been identified, but these were not always considered or compared with ME/CFS.

Initially, there was a significant oversight in not examining the hypothalamic axis and its hormonal impact on neuroinflammation and antibody responses affecting cells throughout the body. While there are studies about prions and apoptosis, a direct link to ME/CFS has not been established. The question arises: is there damage beyond what is commonly examined, such as white matter disease or demyelination, as indicated in recent research? [https://pubs.acs.org/doi/10.1021/acs.biochem.3c00433]

Most ME organizations have long viewed EBV as the primary cause of ME, sometimes overlooking new research suggesting that EBV might be just one of several contributing factors. This resistance to new ideas is partly understandable; previously, these beliefs were the only explanations available. However, this stance can become a barrier to progress as new insights emerge.
[https://www.preprints.org/manuscript/202311.1523/v1]

For patients and advocacy groups, certain beliefs or theories are deeply embedded emotionally or identity-wise, making it challenging to embrace new information that contradicts these views. Yet, this resistance can hinder progress in understanding and treating the condition.

Meanwhile, many individuals continue to endure pain largely unnoticed. The trend of resorting to psychological labels rather than pursuing evidence-based symptom treatment represents a departure from fundamental medical principles. If the pain of patients is not prioritized, it raises concerns about the relevance of the Hippocratic oath in modern medical practice.

© 2000-2025 Sieglinde W. Alexander.
All writings by Sieglinde W. Alexander have a fifty-year copyright.
Library of Congress Card Number: LCN 00-192742
ISBN: 0-9703195-0-9 

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