Ecstasy & Agony
BBC2 9.00pm Thursday 15th February 2001

Parkinson's Disease Society factsheet:

Ecstasy is an illegal substance and the Parkinson's Disease Society (PDS) does not condone the taking of illegal drugs. The following information is given for information purposes to help people to understand the significance of the potential research highlighted in the BBC Horizon TV programme.

1. What is Ecstasy?

Ecstasy is classed as a hallucinogenic amphetamine. Hallucinogenic means it causes changes in perception - visual, mood and thought. Amphetamines are drugs which produce a feeling of alertness and well being, increase muscular activity and reduce fatigue and appetite. Ecstasy is a drug that kills brain cells and therefore has no use in the treatment of any illness.

Ecstasy is a controlled drug. This means that it can only be prescribed under the guidelines of the Misuse of Drugs Act (1971) and Regulations (1973, 1985). These are usually drugs that have the potential for dependence and abuse. The Regulations specify the categories of persons who can supply these drugs, rules for writing prescriptions, manufacture, supply and record keeping.

2. What are the effects of Ecstasy?

Short-term effects: The effects of the drug are felt about 20 minutes to an hour after taking it and can last for several hours. It can make a person feel very energetic and carefree. However it can cause the body to overheat, leading to heatstroke, dehydration and death. Dry mouth, a rise in blood pressure and heart rate, and sickness are also common. The person can feel tired and depressed once the effects of Ecstasy have worn off.

Long-term effects: Long-term use of Ecstasy can cause people to become anxious and confused, with disturbed sleep patterns. There is some evidence it can also cause liver damage. It is also well known that some drugs, including Ecstasy, can cause Parkinson's.

3. What is the legal status of Ecstasy?

Ecstasy is a Class A Drug (the highest classification for illegal drugs). This means it is illegal to possess, give away or sell Ecstasy. Under the Misuse of Drugs Act 1971, the maximum penalties for possessing Ecstasy are 7 years imprisonment or a fine or both. For supplying Ecstasy, the maximum penalty is life imprisonment or a fine or both. The term "supplying" includes passing drugs to anyone else. It is also illegal to allow your house or premises to be used for drug misuse. Employment can be affected by a conviction for any Misuse of Drugs Act offence. Visas to many countries can also be impossible to get if you have a drug conviction.

4. Can a doctor prescribe Ecstasy?

No.

5. Can Ecstasy be used for research?

The Misuse of Drugs Act 1971 permits research into the drug under licence from the Home Office.

6. I want to try Ecstasy. Where can I get it and how much will it cost?

As stated above, Ecstasy is an illegal drug. The Parkinson's Disease Society cannot condone the taking of Ecstasy and cannot provide any information on how to obtain it or details of cost.

7. Is Ecstasy legal anywhere in the world?

There is no knowledge of Ecstasy being legal anywhere else in the world.

8. If I take Ecstasy, will I respond to it as the person featured in the BBC Horizon TV programme does?

There is no research evidence available to help us answer this question. It is quite likely that the response of another person with Parkinson's would be very different, as Parkinson's is a very individual condition and no two people with Parkinson's will experience the condition in quite the same way.

9. Why are the results so dramatic? What is happening to the person featured in the BBC Horizon TV programme when he takes Ecstasy?

In the brains of people with Parkinson's, a neurotransmitter (chemical messenger) called dopamine is in short supply. This loss of dopamine causes the symptoms of Parkinson's to appear. It can also have a knock-on effect on the activities of other neurotransmitters, such as serotonin. The levels of serotonin are abnormal in people with Parkinson's and Ecstasy modulates the brain's serotonin.

10. Why isn't Ecstasy a realistic treatment?

It has too many side effects to be useful in the treatment of people with Parkinson's. It kills brain cells and changes mood and sleep patterns very dramatically

It should be noted that the person featured in the BBC Horizon TV programme does not take Ecstasy on a regular basis for his Parkinson's, due to the dramatic side effects.

11. What insight does the experience of the person featured in the BBC Horizon programme give to Parkinson's research?

Research has suggested several means by which modulating the brain chemical serotonin (5HT) might be useful in Parkinson's. The person featured in the BBC Horizon TV programme shows that there is a realistic possibility that the scientific advances made in the last 5 years might be useful in the development of real treatments. These will not use Ecstasy. It is important to bear in mind that the person featured in the programme is just one person and we cannot even guess whether Ecstasy would have similar effects in other people. However there is a clue here that further research in the area of serotonin in Parkinson's might be valuable.

12. Cannabis is supposed to be helpful for people with multiple sclerosis. Is there any research looking at its benefits for people with Parkinson's?

There is research taking place in Manchester into the effects of Cannabis on people with Parkinson's. The results of this clinical trial are due to be published later this year.

13. Can other illegal drugs help Parkinson's?

There is no potential for other illegal drugs helping Parkinson's disease

14. Can drugs cause Parkinson's?

There is a form of Parkinson's (drug-induced Parkinsonism) that is caused by taking certain medication. Any drug that blocks dopamine (the chemical messenger that is in short supply in the brains of people with Parkinson's) can have this effect. These include those used to treat serious psychiatric problems, and some of drugs used to treat other problems such as dizziness, nausea, and high blood pressure. If you are concerned about drugs you are taking, we suggest you discuss this further with your doctor. The PDS publication 'The Drug Treatment of Parkinson's Disease' has a section on contraindicated drugs.

Some illegal drugs, including Ecstasy, are also known to cause drug-induced Parkinsonism. In the early 1980's some American drug addicts took a synthetic heroin derivative known as MPTP and developed drug-induced Parkinsonism. 15. How does young-onset Parkinson's differ from Parkinson's in older people?

Theories about the nature of young-onset Parkinson's vary. Doctors believe that young-onset Parkinson's is Parkinson's occurring at a younger age, although some individuals may have a different, related condition.

The speed and severity of the progression of Parkinson's can vary greatly between individuals whatever their age, and most clinical symptoms are the same at whatever age the Parkinson's develops.

However there are some specific differences:

Tremor appears to be slightly less common in the younger person. Dystonic spasms (sustained abnormal postures, such as turning in or arching of the foot and toes) are more common in the young-onset person and may precede the emergence of other, more typical features of Parkinson's.

Where young-onset Parkinson's differs most markedly from Parkinson's in older people is with regard to medical management and the psychological, social and emotional aspects of living with Parkinson's as a younger person. In terms of medical management, younger people can often have a more sensitive response to the drug treatment, particularly in terms of certain side effects. A person with Parkinson's aged 40 will have to live with Parkinson's for much longer than someone aged 75, and this can have enormous implications for treatment and planning for the future.

16. Is Parkinson's inherited?

There is no conclusive evidence that Parkinson's is a hereditary condition which can be passed on within families. It is rare to find more than one person in a family who has Parkinson's. The cause of Parkinson's is currently unknown and research is continuing into this area. This includes looking at genetic as well as environmental factors which may be related to Parkinson's.

17. Does Parkinson's have a genetic component even though it is not thought to be directly inherited?

For several years, genetics was not considered to be of primary importance in Parkinson's, but more recent work has suggested that there may be a considerable genetic component in people who develop Parkinson's under the age of 50, and little or no genetic influence on those who develop it later.

Most people now believe, that Parkinson's is likely to have a genetic component which makes some individuals susceptible to something in the environment, perhaps a chemical or a virus.

18. What treatments are available for Parkinson's?

As stated above there is a wide variety of drug treatments available. See the PDS publication 'The Drug Treatment of Parkinson's Disease' (code B13) for more information.

In recent years, there has also been a revival of interest in surgical treatments, particularly for those who have had the condition for some time, or whose Parkinson's seems resistant to drug treatment. See the PDS information sheet 'Surgery' (code FS17) for more information.

Physiotherapy, speech and language therapy and occupational therapy also have an important role to play in the management of Parkinson's. Further information on these therapies is available from the PDS.

19. Why aren't the drugs used to treat Parkinson's helping the person featured in the BBC Horizon TV programme?

The main treatment for Parkinson's is with medication and there is a wide variety of drugs available. Although these need to be tailored to suit the individual in terms of timing and dosage, these drugs provide many people Parkinson's with a good quality of life for many years. However, all drugs have side effects and sometimes these can be difficult to manage in some people. The nature and rate at which these side effects appear is very variable. One of the most common drugs used to treat Parkinson's is levodopa (trade names - Sinemet or Madopar) and side effects of these drugs include the dyskinesias (abnormal involuntary movements) that the person featured in the BBC Horizon TV programme experiences. Not everyone will experience dyskinesias, though people of any age can have them.

20. Hemiballism is mentioned in the BBC Horizon TV programme. What is it and is it related to Parkinson's?

Hemiballism is a motor disorder characterised by violent flailing movements. It is due usually to damage to one of the subthalamic nuclei associated with the basal ganglia. In hemiballism only one side of the body is affected. There is no real link to Parkinson's apart from the fact that the same parts of the brain are involved.

21. PET scanning is shown in the BBC Horizon programme. What is it?

The PET scan (Positron emission tomography) provides anatomical information about the brain. This means that with PET scans it is possible to assess the functioning of different parts of the brain while the individual is carrying out a particular movement or engaging in a specific mental activity. With PET it is also possible to examine the state of particular neurotransmitter receptor sites in the brain. PET scans require the use of radioactive material in very small quantities, usually the equivalent to the radioactive exposure during a transatlantic flight. The dopamine systems in the brain can be assessed with PET scanning.

22. How available are PET scans?

Used mainly for research purposes, in Europe there are now 20 research units using PET. At Hammersmith Hospital, over 700 scans have been carried out on people with Parkinson's, and a large number of healthy volunteers.

23. Does the PDS fund any research involving PET scanning?

The following research has been funded by the PDS:

Professor David Brooks, MRC Cyclotron Unit, Imperial College of Medicine, Science and Technology, London, 'PET Studies of amphetamine and behaviourally induced striatal dopamine release in Parkinson's disease patients undergoing foetal cell implantation'

Dr Nora Turjanski, MRC Cyclotron Unit, Imperial College of Medicine, Science and Technology, London, 'Dopaminergic and serotonergic function in Parkinson's patients with depression measured with PET'

Dr Paola Piccini, MRC Cyclotron Unit, Imperial College of Medicine, Science and Technology, London, 'PET studies in Parkinson's patients with parkin gene mutation'

Dr Nick Wood, Institute of Neurology, London,'Genetic linkage and PET studies on a large British family with autosomal dominant Parkinson's disease.

Professor David Brooks, MRC Cyclotron Unit, Imperial College of Medicine, Science and Technology, London, 'PET studies on graft and cortical function following cell transplantation therapy'.

24. Does the Parkinson's Disease Society (PDS) currently fund any research involving Ecstasy?

Currently, the PDS does not fund any research into the effects of Ecstasy on Parkinson's.

25. Is the PDS likely to fund any research into Ecstasy?

As stated above The Misuse of Drugs Act 1971 permits research into the drug under licence from the Home Office. Any research application made to the PDS will be referred to the PDS Medical Advisory Panel (MAP) and go through their normal processes. This is the panel of experts that advises the PDS on matters of medical research interest. Their major role is to read and referee medical grant applications and then make recommendations on what medical research should be funded. All applications are also sent out for external review. 26. Are you aware of any research taking place internationally on the effects of Ecstasy of Parkinson's?

To our knowledge there is no research into Ecstasy however, research is taking place into the role of serotonin in Parkinson's in Manchester (UK), Bordeaux (France), and Canada.

27. If so, what is the purpose of the research?

The purpose of this research is to further understand how serotonin becomes abnormal in the brains of people with Parkinson's and to understand how to develop drugs that can redress this level. 28. How can I be kept up to date with research into Parkinson's?

Each year the PDS spends more than £1.5 million on funding research into the cause, cure and prevention of Parkinson's, and improvements on available treatments. Further information on current PDS funded projects is available from the Research department.

The PDS quarterly magazine, 'The Parkinson', has a regular feature on research developments and is available to all PDS members. There is also a special interest group for people interested in medical research, called SPRING (Special Parkinson's Research INterest Group). They can be contacted at:

SPRING PO Box 440 Horsham West Sussex RH13 7YE
01483 281307
http://spring.parkinsons.org.uk
info@spring.parkinsons.org.uk

29. How can I get support and advice on Parkinson's?

The PDS offers a wide range of services for people with Parkinson's, their families and friends, and the professionals that are involved in their care. These include:

- A free phone helpline staffed by nurses. The contact number is 0808 800 0303 (Mondays to Fridays 9.30 - 5.30)

- Information, publications and audio-visual materials on many aspects of Parkinson's.

- A membership scheme with a quarterly magazine, 'The Parkinson'.

- Over 250 local branches throughout the UK and a national network of field staff. In addition to the national office in London, there are regional offices in Wales, Scotland and Northern Ireland.

- Dedicated service for those from black and minority ethnic communities

- Special interest groups for people of working age and their families (YAPP&Rs) and for those with a special interest in medical research (SPRING).

- Research programme

- Education, information and training programmes for professionals

30. My relative has a drug problem. Where do I get further information?

Contact the National Drugs helpline, which is a 24-hour, seven-days a week, free and confidential telephone service that offers advice and information for anyone who is concerned, or have questions, about drugs. The number is 0800 776600. They can also provide help and advice in a number of community languages.

Acknowledgement

The PDS would like to thank Dr. Jonathan Brotchie for his help with this fact sheet.
PDS Information Sheet code: FS47 14th February 2001

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