The Committee in 2001 with the Victorian Premier, Mr Steve Bracks

History – the early days

Emerge Australia, its origins and its legacy

The continuing legacy of Emerge Australia as an advocate and representative for those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) proves that persistence is key. From days when the plight of people affected by ME/CFS fell on deaf ears, and when the condition, despite its obvious affect, was afforded only cursory consideration by the medical profession, it took the immense efforts of a precious few to start the ball rolling.

These first steps toward recognition occurred almost four decades ago now, when the group was affectionately known as the Society. It was then that some of our organisation’s most lasting goals were grown from humble beginnings. And it all started over a cup of tea.

Beginnings

By 1980, the recognition for ME/CFS was very low indeed, with the lack of a diagnostic process contributing to the symptoms being continually misinterpreted. However, the effects it was having were very real and the situation simply had to be rectified. This common goal brought together some of the Society’s first members, Jenny Droop, Mary Murray and Alan Robinson, who met for a cuppa at Mary’s home in August of that year.

The group had originally met through their contact with Toni Church (later Toni Jeffreys) from New Zealand. Toni had been instrumental in raising the profile of the condition in the public eye over a number of years. At the time, she had recently had a letter published in the Australian Medical Association (AMA) Journal venting her frustration at not being able to obtain recognition for this enigmatic condition, which seemed to be afflicting a growing number of people.

Toni had, for years, struggled without a definitive diagnosis for the symptoms she was displaying. Thankfully, she had a tightknit group of concerned friends to help her cope with the immense strain of her unidentified illness, but the frustration was undoubtedly a driving force to learn more.

L0003245 Royal Free Hospital, Grey's Inn Road. Accident ward.

Royal Free Hospital

For Toni, breakthroughs were incremental but significant. It was via a BBC Science Magazine broadcast, which she heard about secondhand, that Toni was introduced to a name of a disease that recited some very familiar symptoms. It was called Royal Free Disease, the name originating at the Royal Free Hospital in London. However, with very little cooperation forthcoming with regard to the condition and the origins of the broadcast material, the issue languished – but not without planting a seed of curiosity.

This new possible name for her condition popped up again a number of years later when a friend contacted Toni, telling her to turn on the radio. Royal Free Disease was again on the agenda. Apparently there had been a symposium on the disease a few months earlier in London, with the syndrome and its symptoms having rung bells with a number of people – both those with the condition and those in the medical profession who had encountered them. One of the main problems was diagnosis and a medical profession that knew little of the condition, which had often passed cases onto psychiatrists, thinking it to be a form of neurosis.

This, of course, was and is not the case. What, to that point, had been discarded as ‘Epidemic Hysteria’ by some researchers now had a definite grounding in physical science for Toni. It was no surprise that information had been hard to come by. The condition had been called various things to confuse the situation, one of these ultimately being ME. From this new breakthrough, she learnt that cases consistent with ME had been recorded since the 1930s. However, only now was sensible conversation starting to be conducted on how the growing number of people coming forward with concerns for their wellbeing could reach diagnosis and/or healthily manage their conditions.17053

However, recognition was still a problem, and many, Toni included, were unsatisfied with the lack of validation accorded to ME. The condition was, in Toni’s own words from her book The Mile-High Staircase, “one of the ‘poor relations’ in a hierarchy of diseases… a hierarchy based on how much money, brains, and energy are made available to tackle a medical problem”.

A path had been set out before Jenny, Mary and Alan to raise their case, and hearing of Toni’s efforts, the Society was formed.

Formation

These three foundation members of the Society were to discover that they were not alone in their predicament. Like Jenny, Mary and Alan, many others had suffered from this illness that had little grounding in medical literature; and like them, many others had grown frustrated that their concerns were going unanswered and their symptoms misdiagnosed or mistreated. A proper and professional diagnosis still evaded them, and an organised and concerted effort was needed.

Starting out, the ME Society set out some fundamental goals: to help others understand the condition, its symptoms and the very real effect it has on those affected; and to provide support to those who have the syndrome and those friends and family members tasked with caring for them.

They wanted to galvanise a previously disparate community of people with the syndrome, to make them feel part of a group of like-minded people who could relate to each other in terms of the difficulties they faced.

Through strength in numbers and a reinforced will to bring this illness to the public eye, the Society set out to inform people about this strange condition. This included the medical community, from whom research – let alone advances in understanding – had come in fits and starts few and far between. For too long, the condition had languished in the doctor’s “too hard basket”, often ending up in a psychiatrist’s office.

The original ME Society was not strictly for Victorians, but also branched south and west, taking in people from Tasmania, South Australia and Western Australia. Early on, people residing in Canberra also contacted us. However, a New South Wales group had formed independently at about the same time, into which Canberra was absorbed.

The need for collaboration was clearly evident in the initial stages, as the Society saw the need to gather information for dissemination. If the Society was to build its base and its support offering, it needed to be active in distributing all the information it had to date about the condition.

Computers not being a luxury in 1980, the body of research was not as uniformly available as it is now, and early information used to develop public interest came from various sources. Toni Church was instrumental, as was Bev Le Lievre of the New South Wales branch. The scope of assistance also stretched overseas to Pam Searles in the United Kingdom, whom Alan later formed a close friendship. We were also contacted by the American M.E. Society (AMES).

Perhaps feeling an affinity to the experiences of trying to raise awareness for a little-known and poorly researched condition, the Society also had help from various disability groups, who were helpful in spreading the word. We needed to get information out, and they were more than happy to freely provide photocopy services for our information leaflets and several editions of the newsletter. A journal was soon to come.

Progress

It was a small clan to begin with. In fact, it probably couldn’t get any smaller. Alan was the Society’s first president (1980–84, 86–87), with Jenny as Secretary (1980–84) and Mary taking on the role of Treasurer (1980–87). The only way was up, and by August 1981, our membership had tripled to 10!

That same year, with a membership base starting to mushroom, the Society’s quarterly information brochure, the Emerge journal, was first published. The name Emerge seemed particularly appropriate given the word’s many meanings – “to come into view”, “to become known as a result of enquiry” and “to become newly independent”. The first few issues of the journal were, in fact, produced in one of the member’s bedrooms. It was here that they lay in bed and typed up the issue.

The journal was one way of disseminating information on our own terms, but in promoting the Society, we also needed to gain traction with the general public through mainstream media. A breakthrough came when The Age newspaper responded to the Society’s push for recognition. On 7 November 1981, they published a feature article on the condition, which was then followed by a radio interview. Considering the miniscule membership base at the time, the resulting 125 enquiries was huge! Off the back of this exposure, by September 1982, membership had ballooned to 76.

Without projects to fund, initial fundraising action lacked organisation. The member subscriptions were sufficient for the purposes of keeping everything going in a small, fledgling group. However, there were notable sympathisers. The society’s first donation from Kraft Foods was a welcome and appreciated boost to the Society’s efforts to gain more recognition in the wider community, and this fed into the Society’s motivation to continue sending out more information into the public eye. The Society used the money to print and distribute more information.

What the Society needed, however, was more members. By representing a greater number of those afflicted, the Society would be able to do more and offer more, so work still needed to be done – particularly within the medical profession.

In June 1982, the Society’s first guest speaker, Dr Nick Siemensma, helped to put Chronic Fatigue Syndrome on the map. Nick ran a general practice in Richmond, and observed that these symptoms were cropping up time and again. What was most encouraging was his willingness to understand the condition for what it was, and his early efforts in caring for those he encountered provided a great sense of hope to the widening ME community.

Through the efforts of the Society to broadcast their concerns and available knowledge, and with the help of people like Nick within medical circles, recognition and validation was becoming an achievable end. The opportunities for publicity kept coming, with The Age, The Sun, Woman’s Day, Channel 9, 3LO and 2AW radio all proving receptive to the Society’s cause.

As a result, the Society was becoming an established entity with clear goals and a constitution. The membership base had risen to 120 by November 1983, and the first committee was established consisting of the President, Secretary and Treasurer mentioned above. They were joined by Geoff Booth, Rosilyn Kinnersley (who edited the newsletter with Jenny), with Kathryn O’Loughlin acting as minutes Secretary.

This was a strong base to grow from, and the Society has proved able to face many of the problems to have come its way. For this, the Society has been lucky and fortunate to be aided by countless devoted Committee members over the years, to whom Emerge Australia today can’t offer enough thanks.

Legacy

Of all the decisions made in the early stages of establishing the society, later Emerge Australia, many of the key messages persist to the present day.

Emerge 1981, 1994, 2014

Emerge 1981, 1994, 2014

One of the most important original policy decisions concerned the Society’s attitude towards the medical profession. It seemed at the time almost impossible to find a really concerned doctor, and so the Society took it upon itself to become a conduit for serious medical information to flow to the medical profession. Even if in a small way, this was most important, as many had gone along a line of doctors to end up in a psychiatric consulting room. We know that this condition is an organic illness, a condition that has real and even devastating effects on those who carry it, and so we need to reiterate that fact at every opportunity.

In doing this, however, we do need to keep the profession onside. Falling into a general attitude of criticism would be too easy, and so we need to keep informing medical practitioners about the condition and spreading the word to ensure that those with ME are properly treated, cared for and represented. The Society started with this policy, continues with it and must do so into the future.

With these sentiments in mind, it only seems fitting to finish on a note from the original team of Jenny, Mary and Alan:

Never forget, we are not ME sufferers – we are people with ME! Someday a cure will be found and all the hard work put into the Society will not have been in vain. In the words of the old Swedish proverb, “The afternoon knows what the morning never suspected”.

 

References

Jenny Droop, Mary Murray and Alan Robinson (1994). A short history of the early days of the Society (now known as Emerge Australia)

Toni Jeffreys, The Mile-High Staircase (1982). Hodder and Stoughton Ltd.

 

Thankyou

In compiling the history of the Society, we also would like to thank Ailsa Ramsden for kindly providing both documentation and her own personal recollections about the early days.