ME-Award: speech Minister Borst

Subject to modification, only the spoken text is valid.

1. Introduction

Only a few years ago this would have been unthinkable. An ME- award! I am delighted that the ME-fund, which itself has only a brief history, has made this possible.

I feel very honoured, therefore, to have been invited to present the first ME-award this afternoon.

Incidentally I must admit that I was not in a position to refuse. For one thing, the letter inviting me to present the award said that I was not allowed to say no. More important to me, however, was the letter's claim that the Netherlands has long lagged behind in the field of ME.

I should like to adress two points in more detail: firstly the 'newness' and uncharted nature of the condition, and secondly the importance of scientific research into ME. I promise to be brief, as this is supposed to be a festive occasion!

2. Firstly, therefore: what is ME, actually?

Unfortunately we still know very little about this disease. In fact we have a lot of questions and practically no answers. The uncertainty starts with its name: we call it Myalgic Encephalomyelitis, but is that a correct description of the disease process? Other names are also used: chronic fatigue syndrome, or postviral syndrome. Less scientifically and rather unkindly it is sometimes styled 'yuppie flu', with 'superwomen' designated as typical sufferers.

Its usual symptoms go beyond fatigue. Sufferers complain of sleeping disorders, inability to concentrate, aching muscles, vomiting and a host of other symptoms. Not the least of their problems is the stress of wondering 'what have I got?' and 'how am I going to cope?'. No-one has put this into words as well as the writer and member of the board of the Dutch ME- fund Renate Dorrestein.

In her book 'Today it's me' she says, for instance: 'How many hundreds or thousands more mornings am I going to have to get up stunned and shocked at how awful I feel? It is as if I have been poisoned down to my very cells, as if day in, year out, I am suffering from the worst hangover in the history of the world.'

How do you get ME? Is it the result of environmental pollution? Does it have a psychological origin? Is it caused by damage to the immune system? Are there perhaps multiple causes? Must we assume that in future we shall be confronted by new diseases whose origins cannot simply be attributed to an infection or a metabolic defect, but are as difficult to trace as those of, say, rheumatoid conditions?

What can carers do for people with the symptoms associated with ME? I receive letters from ME sufferers who tell me that they often turn to carers in vain. Some feel that their problems are not taken seriously. I find this a worrying sign. It shows how helpless some carers must feel, but this is no justification for not taking a patient seriously.

Even I have, during the debate on my ministry's budget in the Lower House of Parliament, been questioned about ME. I said then, and I would like to emphasize this again here, that ME is a recognised illness and has been incorporated in the WHO's international classification of diseases.

I believe that doctors should make a clear diagnosis of ME, so that patients can prove to others that they are suffering from a recognised disease - not least to enable those who are unfit for work to qualify for benefit under the Disablement Insurance Act.

3. The government and ME

I do not know if such claims are justified. I believe that the Dutch record on chronic diseases is by no means a bad one. As a group, the chronically ill receive extra attention. This means that they benefit not only from extra research, but also in other ways.

In fact, a special committee has been set up in the Netherlands to work towards improving the quality of life for the chronically ill. Whether they have ME or rheumatoid arthritis or chronic lung disease, many of the chronically ill or people who need long-term care encounter the same problems. Many find, for instance, that carers do not consult one another properly, or know too little of the life of patients with chronic diseases. Many of the chronically ill find it hard to get a job - or to keep the jobs they have. The National Committee for Chronically ill people raises these and other problems among carers, government functionaries and politicians, and suggests solutions. Through its activities the Committee has placed the chronically ill firmly on the political agenda. How many other countries are so active in this area?

4. Research into ME

In this context, however, specific research into ME, is not a priority. I have, therefore, commissioned supplementary research into the causes of ME by the institute of preventive health care of the Netherlands Organisation for Applied Scientific Research. The National Committee for Chronically ill people has also provided a subsidy for research on ME.

Moreover, I should like to point out that research proposals relating to ME can also be submitted within the framework of the European BIOMED research programme.

It is important to work together with other countries in this field, so as to use research funds as effectively as possible.

In short, I believe that we in the Netherlands have not been idle. I do realise, however, that a lot still needs to be done.

Private initiatives continue to play a very important role. One cannot expect the government to solve every problem. I therefore applaud the establishment of the ME-fund as a good and necessary initiative. I also see the ME-award as a very positive development - which brings me to the subject in hand.

5. Presentation of the ME-award