(With illness hitting our President, Boris Dontscheff, I’ve undertaken to write this report)
March 2001
I’m sure you will agree that ME/CFS is a dreadful illness. It’s chronic, it’s invisible, and it’s poorly understood. We certainly have a lot of things that appear to conspire against us at times.
I’ll give you a classic example of how tough it is. A person with ME/CFS recently went to court to dispute his rejected Centrelink application for the Disability Support Pension. He decided to represent himself on the advice of legal counsel. His appeal was rejected – one of the reasons given was that he represented himself so well. By doing a good job they thought he couldn’t possibly be sick enough to warrant the pension.
Ironic, isn’t it? We all know we can gear ourselves up to perform for a short period of time, but it is not indicative of how we are the other 6.5 days of the week. Yes, we face an uphill battle to increase understanding, don’t we?
Unfortunately no-one. If we are going to make progress we are the ones who will have to forge the way ahead. I know it’s tough, but it’s time for us to pull together, and for ‘the tough to get going.’ We must actively seek to shape our destiny.
The people who shape world history, and actually make a difference are the determined ones – people willing to make a sacrifice. It’s not necessarily the ones who are the smartest, most-gifted or enjoy full health. I never met her but I hear our founding President, Lyn Drysdale, was a remarkable person. She would organise the society and counsel people from her sick-bed; and at all hours of the day and night. She wouldn’t let her poor health be a barrier to helping others – she is a great example to us all.
We have a big task ahead of us, and we are at a critical point in ME/CFS history in Australia – the revised clinical guidelines are due out sometime soon. We need to be ready to debate and critique them strongly. (They guide GPs in how to treat ME/CFS.) More about them in the next issue.
To move ahead we mustn’t ignore the difficulties we face in our society. Membership is down (and even when its been higher we had only the tip of the iceberg) and that places a financial strain on the society – especially as we now have to pay more rent for our office. And, as most members who take an interest in the running of the society would know, we have had a constant turnover of management committee members over the last few years.
This has meant a lack of continuity. I can’t express strongly enough how difficult it is for an organisation to grow/develop if every year its management committee has to re-invent the wheel. Frankly, whilst that wheel is getting re-invented, so much other stuff is not being worked on. And so this new management committee finds itself slowly working its way out of a big hole. Having been elected in February it will take several months for us to come to terms with our roles and responsibilities. It’s not an ideal situation.
The single biggest problem we face too much is always left to too few, and either people burn out, or the team burns out (disintegrates) because of stress. And because some have burnt out, we are reluctant to ‘put up our hand’ for fear of overwork. As an organisation I estimate we have only have half the number of people needed to safely carry out the core business of the society. I can honestly say things do need to change – there are only so many people in the society left – and I hope we can face the issue together and work to recreate the culture of our society from the ground up.
Until you get involved in committee, you just don’t appreciate how much work there is. It fast becomes a lonely occupation. Being an incorporated body and a registered charity involves many responsibilities: to other charities, to our patron, to Charity Direct, and other organisations we work with (eg SACOSS, Volunteering SA), to our members, and all our volunteers. Volunteer organisations have the same legal responsibilities as professional ‘for-profit’ businesses, and increasingly the expectation is that volunteers be treated no differently than paid employees. There is a lot to think about, and it’s all new stuff to most of us.
So, please understand that the management committee has a big job and it needs your support. Together we can really build up this society – we have a great team of people involved at the moment. I’m not just referring to the management committee, but to the support line workers and to the support group leaders. We just need to expand that team in numbers, and develop expertise together.
Every management committee is swamped with admin – and this inevitably impairs its ability to focus on the things it should be doing such as forward/strategic planning. Our aim is to develop an office admin team separate to the management committee. This team would run the office and ensure the society’s basic administration is carried out eg mailouts, correspondence and phone calls properly dealt with. This would leave the management committee free to concentrate on governing (the big picture) the society. I can already say that having to do both is already taking its toll on me. It’s just too much.
To achieve this goal I believe our society needs to recruit a minimum of 6-10 extra people who can do 3-4 hours a week each.
The biggest issue we face – and I’m going to say it right out – is this committee going to burn out? Ultimately that is the management committee’s responsibility BUT I suggest there is also a corporate responsibility to ensure this doesn’t happen. As I said earlier I think we have a great team, and I think it needs to be valued, encouraged and supported.
You may have been surprised by our mailout in March, outlining drastically reduced office hours. We have been finding it difficult even to meet these obligations. Our new management committee is faced with many tasks: orientation, updating job descriptions, writing policies, doing a financial audit and financial planning, upgrading our office, grant writing, improving our core services, making up doctors and new member packs, making a brochure to go into doctor’s surgeries, as well as restarting the volunteer project. There really is a lot.
You may say, “We need to scale back what we are doing with the society” – but it is very hard to see where we can cut back in terms of our responsibilities – we are doing a bare minimum as it is now. Support groups, the support line, Talking Point, SAYME, public meetings and awareness week are all valuable. To cut back services would be disastrous. I believe we actually need to spend even more time improving each of these core services, as well as offer more things for the long term sufferers. The latter is needed to help retain members long-term. I believe we have simple choice right now: curl up and die (scale back), or have a crack at improving what we do (with a view to expanding). And I’m not one to give up easily.
Well,
we must be careful to not be like our friend Egbert in the cartoon. Whatever
work we do must be well thought out and planned. Activity doesn’t equate to
productivity. We are looking at updating the office computers, installing a
network and putting in place systems that will streamline the admin tasks of
the society.
We are building up ties with Volunteering SA, and part of the reason for updating the office, is that we need to make our office a great place for volunteers to work. A place that is organised and has good use of technology is appealing, and will enable us to attract more interest from outside volunteers.
The previous management committee instigated an important process – it developed a list of the day-to-day jobs in our society. This information was passed on to members in the form of a volunteer recruitment form that was sent out in October last year. (Thankyou to those who responded.)
The idea is simple. Break all the jobs of the society into manageable bits. People, who would like to help out a bit with the society, can then be matched to their nominated skills/interests and to the workload they can undertake. Some have been overwhelmed by this list, but that is the very opposite of what was intended. Yes, the list of jobs required is long, but please keep in mind that we are not asking anyone to do them all – just one.
In order to break up the running of the society into more manageable pieces we have set up several sub-committees. These will research and explore issues and make recommendations back to the management committee, as well having specific oversight over certain service areas within the society. This immediately opens up opportunities for more people to be involved in running the society (This may involve only 5-6 hours a month.) Over time sub-committees will reduce the management committees’ workload, and this is step in the right direction toward retaining management committee members.
Do you believe ME/CFS is a terrible illness? It’s time for all who believe this to roll up their sleeves to have a go at making this society really work. This is the year of the volunteer and I reckon we deserve our fair share.
Maybe you can help, but if not – perhaps you have a friend or family member who can, or perhaps you belong to a community group where you could advertise for voluntary help.
There are many small jobs, and a number of big jobs. Even if you can only do a little, we need people to take on specific tasks and be prepared to stick at them. Remember that volunteering has its benefits – it gets you out of the house mixing with others, it provides opportunities to develop skills, and we can give anyone a reference who requires it.
Finally, it would be great to see as many of you as possible come along to our ‘Public Medical Lecture’ on International ME/CFS Awareness Day, May 12. It will be a great day, and it will be a chance for you to meet the new management committee.
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This article appeared in the March 2001 issue of Talking Point
Copyright ME/CFS Australia (SA) Inc
Reprinted from http://www.sacfs.asn.au/