Miscellaneous Reports

June 2001

Tidying up the year 2000

The year 2000 had its ups and downs. Rightly or wrongly it was decided not to publish the President’s report in the December Talking Point.

On February 10, at a special General Meeting of the Society, the caretaker Management Committee promised to investigate the concerns raised by the outgoing president in his report, and publish our findings in TP.

Following is a report by Bill Daniels who was president for roughly the first nine months of the previous Management Committee’s term. Between this report and the outgoing President’s report we get an overview of the whole year.

You will find a copy of the outgoing president’s report following, and the Management Committee’s report on the state of the Society.

The Management Committee

President’s Report – November 1999 to September 2000

I am grateful to the new Committee for giving me the opportunity to say goodbye from my time as President.

The Society has gone through many personnel changes in the past few years. In an attempt to reduce the re-invention of the wheel, a major focus of the new management committee was an attempt to improve record keeping and to find a sense of accountability, which should give a boost to self esteem and a strengthening of the Society.

As already documented, the year had its fair share of turmoil, built on a lack of managerial experience, illness, conflict of interests and personality clashes and a failure to stick to/develop clear goals that all Committee members respected and understood.

Earlier in 1999 I had written “An Orientation Program to the Society,” and Cathie and I delivered it to eight eager members. It was to set the standard for all servants of the Society from Committee people, through our service arms and to include all new volunteers. Unfortunately lip service was paid to subsequent induction, as the need for the day to day running of the Society was seen as more important. Without a corporate training program, our organisation may continue to struggle, as well-meaning servants may not have the understanding of the aims and objectives of the Society, the structures already in place and an awareness of the methods of using them.

Despite some negativity, there were some real growths for the Society:

I have not named people involved, as they have been mentioned in my earlier reports, but their collective effort gave your Society purpose.

On a personal note, it was good to be approached WEA to develop and present a course on Managing Chronic Fatigue Syndrome – which I’ve been able to do three times – and use that opportunity to raise awareness about the society to non-members.

A range of interesting speakers enlightened those members who were able to go to the Quarterly Meetings from Disability Action, Centrelink and SAYME. The Committee and friends went to great lengths to provide a trading table, raffle and afternoon tea, to give us all a chance to socialize briefly after meetings.

Awareness Week culminated in a brave gathering of over 100 people (torrential rain, with local flooding!) participating in a meeting to hear Dr Ian Buttfield, Tania Emms and Dr Henry Butt talk of their research as members of the Collaborative Pain Unit at the University of Newcastle. The Newcastle group has offered a lot of hope to our members in recent years and it was good to hear of future developments.

A monumental change, which was beyond our control, was the shift to new premises. We are very grateful to DIRC for allowing us the extended tenure at DIRC, but the independence, with economic rent presented a real challenge. Teams from the Committee viewed and evaluated over a dozen possible locations ever aware of the constraints of travel, parking, chemical sensitivities, and physical access for our members. I actively encourage members to visit the new facilities in Pirie Street, to experience the support our Society can give.

I know people have felt “threatened” by requests for help, but every little bit helps, and reduces the load for fellow sufferers, who have put up their hand. It is one of the major ways Our Society can grow.

I am humbled by the time people are willing to give to our Society. I wish the new Committee well, and hope the Society can continue to grow. I have appreciated the support and best wishes members have given me.

I believe we can all play a positive public role in increasing the awareness of ME/CFS, through openly challenging people to accept and understand our illness.

Warm regards,

Bill Daniels
President, ME/CFS Australia (SA) Inc
June 20, 2000

President’s Report – September 9 to November 25, 2000

Thank you all for making yourselves available for this AGM meeting November 25, 2000.

As President of the Society since September 9, 2000. I have observed in brief the following:

The Society

1. The Constitution in its present form is outdated and should be re-looked at.
   
   
2. Membership is down to 276 paid members to date and declining since 1998 when it was reported 124 previous members did not renew and now this figure has reached 201.
   
   
3. Working in an unstable style management and structure.
   
   
4. There is no manual/handbook that every new committee can refer to on how to access the requirements necessary to perform any duties, tasks and adherence to law requirements.

The Committee

1. Inappropriate behaviour at meetings not befitting the Society, position and responsibilities.
   
   
2. The committee overextending itself in its services it wants to provide while the basic running of the organisation has extreme flaws, ineffective in many areas in particular its daily operations.
   e.g. 1) The income and expenditure statement for the year ending 30th June 2000, of which you have a copy, showing the year 1999 surplus of $59898 & the year 2000 a surplus of $30878 a fall of $29,020.00 – this means the amount was spent by July 99 committee and up to the June 2000 Committee. This is serious money and a large expenditure.
   2) In the September Talking Point on page 3 it has been reported to you “We are getting there” and on page 4 it is reported under membership ‘coming along nicely’ suggesting we might get up to 500 members but membership is down and our financial status does not look healthy and the bulk of the money is earmarked for Research which leaves an amount of some $12,000 for the Society to function on, at this rate I predict the Society becoming insolvent within a period of twelve months if no assistance is sought.

Policies

1. Lapsed members playing an effective, influencing and advising roles within the Society e.g. The Support Line Team is made up of six people which only has two paid-up members, but all six have been given the members database list which gives out all our personal information?
   
   
2. At the November committee meeting the whole committee voted that to have access to this type of information you must be a paid up members and reimbursed reasonable out of pocket expenses.
   
   
3. The Committee members must abide by the rules as per the Constitution and yet a sub-section of the Society can as it were please themselves and all providing very convincing arguments which is not extended to the committee members. Why rules for some and rules for others?

Members

1. Members must also take neutral stance where possible to rumours and the like and not react to them instantly without going to the source or request for more information to gain proper outcome.
   
   
2. It is also the member/s responsibility to assist the Society in getting it right e.g. dare to ask questions, understanding the difficulties running a Society, become involved and not sit in judgement will all help towards the cause or whatever you think is necessary because your investing, by way of a yearly fee, in your own illness and health, which stands today at a maximum of $0.67 cents per week which is not even a pasty a week but some members wants service and/or consideration for a pasty with sauce and, if at all possible, a small carton of iced coffee, but one thing do not leave it up to the Committee members only to get it right because we are all in it together.

This ends my report for this period of September 9 till today, November 25, 2000. Thank you.

Harry Hup
President, ME/CFS Australia (SA) Inc

Management Committee Report

As a Management Committee we undertook on the February 10 at a Special general meeting to investigate and report back on the state of the Society, with reference to the outgoing president’s (Harry Hup) report.

Constitution

Advice on our constitution indeed suggests that the most basic template was used to construct our constitution. Whilst there is nothing ‘wrong’ with it, it is indeed need of a review to bring it up to date and more in line with where we are currently at. However the job of fixing it up is no small one – and will require a significant amount of attention to do the job properly, and in one hit. The Management Committee is yet to decide when it will undertake a review of it. We are agreed that any review should be comprehensive not piecemeal, and should involve consultation with members.

Membership

We are pleased to announce that since the last Talking Point (TP), things have picked up and we are up to 360 members. Low membership has been the product of leadership turnovers, run down services and few services for the long-term sick. We have addressed these issues beginning with TP which we have beefed up. Next we will focus on producing a range of information brochures. We have commenced analysis other group’s information brochures, and programs for coping with long term illness.

Management Committee handbook/manual

This Management Committee has begun compiling a reference manual for Committee Members. At this stage we have included useful information regarding the role/responsibilities of Management Committees. Before the year is out we intend to draw up a list of Standing Orders that the Committee is currently using, and we will document the various responsibilities/relationships we have with other organisations. This will help with continuity from this one to the next.

Expenditure

We are puzzled at the references to income/expenditure. The figure $59, 898 is not the surplus for the year ending June 30, 1999 – it is the income. And similarly the figure $30, 878 is not the surplus for the year ending June 30, 2000 – it is the income. There was a fall in income of $29, 020 in the last financial year, as compared with the one before. The higher income was due to a successful grant applications, more donations, a concert and higher membership.

The financial statements therefore show that expenditure was virtually the same in these financial years (around $40,000). Thus the difference in surplus is coincidentally equivalent to the difference in income over these two years. The difference in the profit of $20, 225 to the end of Jun 99 and the loss of $9,208 to the end of Jun 2000 is $29, 433 to be exact.

The question is ‘why this turnaround’ and it is largely due to a smaller income. Administration/office costs seemed to be a little up and we have tried to this point to minimise them, whilst maintaining services for members.

Policies

The new management committee doesn’t believe that volunteers have to be members of the society to help with it. In fact we want to encourage ‘outsiders’ to get involved. The Society benefits enormously from the assistance of those who are not members; parents, friends, recovered former members to good-hearted members of the community. In fact, it would be difficult to maintain our services without their support and we thank them for it.

Is this legal? YES. The constitution requires only that management committee members be members of the society. We can sign on volunteers to work with us without them becoming members. With regard to confidentiality there is no problem. Like most organisations we have strict policies on maintaining confidentiality. Our volunteer manual has a section on this, and all volunteers are referred to that during orientation. Volunteers are required to sign a form agreeing to abide by the Rules and Constitution of the society. We see no problem in volunteers being exposed to members’ information, as they are working under the same conditions and privacy protection requirements that would apply if they were paid staff.

We think it unfair that the Support Line workers were singled out in this document as they do a great job and provide a service to members – and we are especially thankful to those who do not have our condition and give of their time for us. We know from member-feedback that many have appreciated the ‘friendly ear in a time of need’ which these volunteers provide. So in this the International Year of the Volunteer we celebrate all volunteers – members and non-members alike!

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We do not believe that our society can run on membership monies alone – we require serious funding. The new Management Committee has formed a Grants Working Party, which has met several times and is in the process of gathering and writing up the materials necessary to write grant applications. We expect to apply for many grants over the next 12 months.

We are working flat out and to lay the foundations for a strong organisation. Expansion of services will require an expansion of our volunteer team.

Therefore the Society and its Services currently reflect the combined effort of all of us. The Management Committee is currently working on ‘overload’ to bring us into line with the funding achievements of other states – through both government and private sources.

Until we can rely on outside funding, we are dependent on the finance and voluntary support of all members. This is nowhere more apparent than in office and management roles that are carried by paid staff in many similar organisations and sister societies. When this changes it would be a great pleasure for us to drop membership prices, but until this occurs we are left with little choice.

We look forward to a hugely productive and enjoyable year ahead. We thank members for their existing support and welcome your participation in our society’s regeneration. At both a national and state level there are now tremendous opportunities for this society to represent members on the provision of services and education of health care providers.

The Management Committee

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This article appeared in the June 2001 issue of Talking Point

Copyright ME/CFS Australia (SA) Inc

Reprinted from http://www.sacfs.asn.au/