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Myalgic Encephalomyelitis and Postviral Fatigue States – The saga of Royal Free Disease by Melvin Ramsay

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If you read just one book, one document, or one paper about Myalgic Encephalomyelitis, then let this book be it. A. Melvin Ramsay (⋆1901 – † 1990), MA MD and Honorary Consultant Physician in Infectious Diseases, dedicated 30 years of his life to the research of this disease and this book is a summary of his life’s work.

Myalgic Encephalomyelitis and Postviral Fatigue States – The saga of Royal Free Disease by Melvin Ramsay

ME and Postviral Fatigue States

ME and Postviral Fatigue States

The books starts with an extensive description of the Royal Free Disease, the outbreak at the Royal Free Hospital in 1955, followed by shorter descriptions of another 21 outbreaks in the UK, USA, France, Switzerland, Australia, Iceland, … At the time of writing of the book 52 outbreaks had been recorded. Some of the outbreaks affected mostly women, in others the male/female ratio was 1:1, and at least 2 outbreaks affected only men (army units). There is a lot more information about each outbreak in the book: symptoms, number of patients, location, the different names that were given to the disease, …

In the following chapter the differences and simularities between the endemic and the epidemic form of the disease are explained.

In the early seventies ME became a synonym for mass hysteria in the public eye. That was long before Simon Wessely, William Reeves or Boudewijn Van Houdenhove took the stage. How did that happen? Well, a whole chapter is dedicated to how this came to be and to the refutation.

The last two chapters are dedicated to an overview of research projects and a discussion of what is known up to the time of writing.

Again, if you read only one document, one paper, or one book about ME, let this book be it. I cannot recommend this book enough; it should be required reading for every (aspiring) ME and even ME/CFS activist or advocate.

There is ME as described in this book by doctors who were there when an outbreak occured, based on more than half a century of research, and then there is contemporary ME, what patients’ belief it is and that can be something completely different.

Besides the dozen or so different CFS definitions, Leonard Jason identified 4 different ME-definitions (Ramsay, London, Hyde-Nightingale, Goudsmit) and that was before the International Consensus Criteria for ME were published. Historic ME, before the 21st century, was associated with a viral infection. If some (fringe) scientists and lots of patient advocates are to be believed contemporary ME can also be caused by toxins, bacteria, retroviruses, mold, whiplash, trauma, chem-trails, electromagnetic field, vaccination, or stress. Take for example the largest Belgian ME-organization, they have jumped on the chronic Lyme bandwagon, claiming ME was chronic Lyme all along – after claiming that ME was caused by XMRV just a couple of years ago. Scientists who are supposed to be on our side and science-illiterate patient advocates are in no small part to blame for ME becoming a synonym for CFS, a wastebasket diagnosis.

In the six years that I am online as a patient, I might have met maybe a dozen patients who have read this book, who have a good knowledge about what ME really is, or who know the history of ME, but there are hundreds if not thousands of patients who voice their opinion about ME every day.

Please, do our cause, your fellow patients, and future patients a favour and read this book to make sure that your opinion is based on facts.

Thank you.

I am now in no doubt that ME is an endemic disease
which is subject to periodic outbreaks of an epidemic kind.
A. Melvin Ramsay

Resources

  • “Myalgic Encephalomyelitis and Postviral Fatigue States – The saga of Royal Free Disease” by A. Melvin Ramsay, available at the ME Association’s online shop
  • Jason, L. A., Damrongvachiraphan, D., Hunnell, J., Bartgis, L., Brown, A., Evans, M., & Brown, M. (2012). Myalgic Encephalomyelitis: Case definitions. Autonomic Control of Physiological State and Function, 1, 1–14 (link).
  • Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell, et al. Myalgic Encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine. 2011 doi: 10.1111/j.1365-2796.2011.02428.x. (link)

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