{"id":12964,"date":"2017-05-12T07:05:34","date_gmt":"2017-05-12T07:05:34","guid":{"rendered":"http:\/\/wames.org.uk\/cms-english\/?p=12964"},"modified":"2017-05-12T07:05:34","modified_gmt":"2017-05-12T07:05:34","slug":"me-awareness-the-mea-revisits-the-toxic-legacy-of-mcevedy-beard","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/me-awareness-the-mea-revisits-the-toxic-legacy-of-mcevedy-beard\/","title":{"rendered":"ME awareness – the MEA revisits the toxic legacy of McEvedy & Beard"},"content":{"rendered":"

ME Association<\/strong><\/a> blog post, 10 May 2017: During ME Awareness Week, we revisit the toxic legacy of McEvedy and Beard<\/a><\/h3>\n

 <\/p>\n

A paper written by two psychiatrists in 1970 has influenced\u00a0medical,\u00a0public and media perceptions of ME as an illness for decades. For ME Awareness Week, SARAH STAPLES argues it\u2019s a story that every patient with ME needs to know \u2013 and share.<\/p>\n

It would almost be funny if its effects hadn\u2019t been so tragic. And after all, who would believe it? A disease defined by a flawed 40-year-old study \u2013 where no patients were interviewed and which concluded that\u00a0ME\u00a0was mass hysteria because many of those affected were women.<\/p>\n

But that\u2019s ME. And it\u2019s not funny. Because ask anyone \u2013 male or female \u2013 who has it and they\u2019ll tell you their own horror story of the day a doctor told them to go home, take an aspirin and rest. Or the time a taxi driver taking them to college \u2018joked\u2019 it was only a short walk and they were lazy.<\/p>\n

Both these stories, incidentally, are true \u2013 and recent. And both, perhaps, can trace their origins in part to that same research paper \u2013 and the misconceptions that spread from it down the years like Chinese whispers. So let\u2019s begin our history of ME on January 3, 1970.<\/p>\n

It\u2019s not a date that will stand out of the history books. The next day, The Beatles will record their last session, giving it some kudos. But Jan 3 passes largely unnoticed. But it\u2019s on this day that The British Medical Journal prints a paper called Royal Free Epidemic of 1955: A\u00a0Reconsideration.<\/p>\n

M.E.\u2019S ZERO HOUR<\/strong><\/p>\n

In some ways, the outbreak at The Royal Free is ME\u2019s Zero Hour. Over a period of four months, from July to November, 292 members of the medical and administrative staff working at the\u00a0Royal Free Hospital in London\u00a0were struck down by a mystery illness \u2013 with 255 admitted to hospital.<\/p>\n

It made newspaper headlines. It baffled doctors. Its wide-ranging symptoms \u2013 muscle weakness and pain, extreme tiredness, headache, even vertigo \u2013 left them scratching their heads. Some suspected it was polio-type illness. But all blood tests came back negative.<\/p>\n

Science \u2013 medicine \u2013 drew a blank. But no-one disputed that what the patients had suffered was a real and physical illness, bringing misery riding on its coattails. Some patients recovered, but many would never feel well \u2013 never work again. For a while, it was known as The Royal Free Disease.\u00a0A year later, when the outbreak was written up in The Lancet,\u00a0it got a name, the name we know it by today: Myalgic Encephalomyelitis.<\/p>\n

Fast forward some 14 years later. The Sixties are about swung out and two well-respected psychiatrists, Lancashire-born Colin McEvedy (pictured left) and Bill Beard approached the Royal Free and asked to examine the medical notes written by doctors who had been on the front line of this medical mystery.<\/p>\n

Among those doctors unsure about this move was Dr Melvin Ramsay,\u00a0the specialist in infectious diseases\u00a0who\u00a0 looked after the patients during the Royal Free outbreak\u00a0in 1955 and the man who would go on to help found the ME Association.<\/p>\n

\u201cThere was disquiet at the time that those notes would be given to McEvedy and Beard,\u201d says Dr Charles Shepherd, now the charity\u2019s medical adviser. \u201cOne thing Melvin would always say was that it should never have been done, it should have been opposed more strongly\u201d.<\/p>\n

Hindsight is a wonderful thing. McEvedy and Beard\u2019s work was to centre purely on those notes. They did not interview patients who had fallen ill during the outbreak. They did not track down and speak to those who were still suffering \u2013 as we now know many were. Instead, A Reconsideration is not a thorough scientific investigation, but a prod of the dying embers.<\/p>\n

\u201c\u2026there is little evidence of organic disease affecting the central nervous system\u2026\u201d they write in their summary: \u201cand epidemic hysteria is a much more likely explanation\u2026The data which support this hypothesis are the high attack rate in females compared with males\u201d<\/p>\n

Factory girls, girls\u2019 schools, convents, they say later,\u00a0are\u00a0all environments where the female population is segregated are prone to these hysterical outbursts. \u201cIt is surely\u201d they add, \u201cdifficult to associate this epidemic with an infective agent.\u201d<\/p>\n

ANCIENT ATTITUDE<\/strong><\/p>\n

The seventies might have been the era of bra-burning feminism, but McEvedy and Beard\u2019s conclusion that the outbreak was hysterical in origin because of the \u201chigh attack rate in females compared with males\u201d is more than 2000 years old.<\/p>\n

The ancient Greeks believed a woman\u2019s uterus was a living creature, wandering through her body and causing disease and neuroses. Even the word hysteria comes from this idea. It\u2019s an attitude that has more holes in it than a colander.<\/p>\n

But their four page report would stick like a piece of chewing gum on the sole of a shoe, influencing what the newspapers wrote in the 80s when stories of Yuppie \u2018Flu appeared on newsstands, how patients were treated by their GP and what the man on the street thought.<\/p>\n

\u00a0ONE FOR THE BIN?<\/strong><\/p>\n

\u201cOne of the major criticisms of the way McEvedy and Beard is that they didn\u2019t speak to any of the patients involved. This was purely an analysis of medical notes,\u201d says Dr Shepherd. \u201cThankfully, their work doesn\u2019t have as much impact now as it once did, and it\u2019s largely regarded as an item for the historical dustbin.\u201d<\/p>\n

But there\u2019s no doubt, he says, that their paper influenced a generation of doctors.<\/p>\n

\u201cI was\u00a0a medical student\u00a0at the Middlesex Hospital at the time the McEvedy and Beard paper came out.Ironically, I was\u00a0doing my student\u00a0psychiatry\u00a0at the time. Of course, the thinking was that ME didn\u2019t exist and that it was mass hysteria. So it had a major impact on those doing medical studies at that time \u2013 and\u00a0also\u00a0had the effect of stifling research.<\/p>\n

\u201cPeople who wanted to do research in this area were often dissuaded from doing it because they were told\u00a0ME\u00a0wasn\u2019t a physical illness, it was psychological. That mud stuck for a long, long time.\u201d<\/p>\n

What if those researchers hadn\u2019t been steered away? If they had investigated more thoroughly, they might have found that there had been other outbreaks not just nationally, but globally.<\/p>\n

Even before the Royal Free, pockets of a similar illness had flared up in north London months earlier. A year later, in Dalston, Cumbria, a worried local GP catalogued an illness that affected 233 of his patients in a small rural area \u2013 many of them children \u2013 with a male\/female ratio of 1-1.<\/p>\n

There were outbreaks of what is believed to be ME in Los Angeles, Iceland, Switzerland. Australia. \u00a0\u201cWe still don\u2019t know what\u00a0infection caused\u00a0these outbreaks,\u201d says Dr Shepherd. \u201cAlthough they are rare now they\u2019re absolutely not unheard of.\u201d<\/p>\n

THE LONG VIEW<\/strong><\/p>\n

So was the Royal Free really Zero Hour? Is ME a twentieth century phenomenon? Perhaps not.<\/p>\n

\u201cThere are historical diseases that fit its description,\u201d says Dr Shepherd. \u201cIn the 1700s there was \u2018febricula\u2019 or \u2018little fever\u2019,\u00a0an illness described by physician Sir Richard Manningham at the time, that could have been\u00a0ME. Florence Nightingale goes down with something and there\u2019s\u00a0been\u00a0quite a lot of discussion about whether that could have been ME.<\/p>\n

\u201cLife expectancy was short. If someone didn\u2019t thrive they were written off as being sickly. There wasn\u2019t the healthcare for many people and there wasn\u2019t the science to investigate illness. People talk as if ME is a \u2018new\u2019, modern illness. But how do we know that?\u201d<\/p>\n

But the landscape, he believes, is changing. Few now take A Reconsideration seriously. Globally, there is more biomedical research taking place.<\/p>\n

As one scientist pointed out recently, it would be arrogant to assume that because they hadn\u2019t found the causes of ME, that there wasn\u2019t anything there to find.<\/p>\n

CLEAR LESSONS<\/strong><\/p>\n

McEvedy and Beard\u2019s damning conclusions about the cause of ME had a powerful and prolonged effecton UK medical opinion. But the lessons for the future are clear \u2013 and many will argue have still not been heeded. Research into ME needs to be scientific, thorough and \u2013 when it\u2019s wrong \u2013 righted.<\/p>\n

Read Royal Free Epidemic of 1955: A Reconsideration:<\/a><\/p>\n

Dr Melvin Ramsay\u2019s little book about early outbreaks of M.E. \u2013 including the Royal Free event in 1955 \u2013 can be bought from the ME Association. Please order it\u00a0at the\u00a0online shop at www.meassociation.org.uk\/shop\/books\/saga-of-royal-free-disease\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

ME Association blog post, 10 May 2017: During ME Awareness Week, we revisit the toxic legacy of McEvedy and Beard   A paper written by two psychiatrists in 1970 has influenced\u00a0medical,\u00a0public and media perceptions of ME as an illness for … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[367,138],"class_list":["post-12964","post","type-post","status-publish","format-standard","hentry","category-news","tag-me-association","tag-me-awareness"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-3n6","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/12964","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/comments?post=12964"}],"version-history":[{"count":2,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/12964\/revisions"}],"predecessor-version":[{"id":12981,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/12964\/revisions\/12981"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=12964"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=12964"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=12964"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}