Myalgic Encephalomyelitis

– in the Scottish Parliament at 4:31 pm on 23rd January 2002.

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Photo of Lord David Steel Lord David Steel Presiding Officer, Scottish Parliament 4:31 pm, 23rd January 2002

We come now to the members' business debate on motion S1M-2402, in the name of Alex Fergusson, on research into ME.

I appeal to members who are not staying for the debate to leave quickly and quietly. Perhaps Alex Fergusson could make a start. Talk loudly.

Motion debated,

That the Parliament notes the privately funded research to be carried out by Dr Derek Pheby in Bristol, and that being carried out by Dr Vance Spence in Dundee, into the factors which may be involved in the development of severe myalgic encephalomyelitis (ME); recognises that ME is a condition growing in incidence among both adults and children in Scotland, and considers that the Scottish Executive should take the lead within the UK by commissioning further research under the remit of the NHS into the causes of, and cures for, this debilitating condition.

Photo of Alex Fergusson Alex Fergusson Conservative 5:03 pm, 23rd January 2002

I will do my best to overcome the background noise.

Diseases whose main symptom is disabling fatigue have been around for hundreds of years. Indeed, there is evidence that both Florence Nightingale and Charles Darwin suffered from such a condition. It was not until the 1950s that the term myalgic encephalomyelitis began to be used for a specific syndrome. Some did not like the term ME and preferred to call the condition post-viral fatigue syndrome. In 1998, the two names were subsumed under the official designation chronic fatigue syndrome, or CFS.

The names post-viral fatigue syndrome and chronic fatigue syndrome have caused untold damage. In the eyes of a sceptical general public, any name that involves the word "fatigue" simply translates to mean "I am tired." Phrases such as yuppie flu became commonplace. Some even referred to ME as an acronym for malingerer's excuse. In turn, that led to a general scepticism about a condition that was and is increasing at a rate that is so alarming that we should be greatly concerned.

In April 1994, UNUM—one of the largest disability insurers in the United States of America—reported that, from 1989 to 1993, claims for disability due to CFS for men increased by 360 per cent and claims for women increased by a staggering 557 per cent. No other disease category surpassed those rates of increase.

In Australia, researchers found that patients with the disorder have more dysfunction than patients with multiple sclerosis; that the degree of impairment is more extreme than in end-stage renal and heart disease; and that only in terminally ill cancer and stroke patients is the sickness impact profile greater than it is with ME.

In America, research found that chronic fatigue and immune dysfunction syndrome—as ME is sometimes known there—particularly and uniquely disrupts the quality of life. All sufferers related profound and multiple losses—including loss of job, loss of relationship, loss of financial security and loss of future plans, daily routines, hobbies, stamina and spontaneity. Any of us in the chamber who has met constituents with ME will acknowledge the dreadful truth of that statement. To that list, I would add the loss of one's house. Some sufferers' houses are repossessed because they are refused access to the benefits to which they should, in any truly caring society, have almost automatic access on being diagnosed.

Other members will speak about this aspect of the disease, but I cannot stress enough how important it is to re-educate—if members will forgive the term—those who assess ME sufferers when they apply for benefits. It is not enough to say that benefits are a reserved issue. The assessors are appointed by the Scottish Executive. The Executive can and must take immediate action in that field.

Further research has unveiled the intolerable facts that 77 per cent of sufferers experience acute pain; 80 per cent feel suicidal at some stage as a result of their illness; 70 per cent are either never able to, or are often too unwell to, attend general practitioners' clinics; 65 per cent have received no advice from their GP; and 80 per cent of sufferers who are currently bedridden have been refused a home visit. In the face of all those facts, the public remain sceptical and the medical establishment has, until now, considered the problem to be, in essence, a psychiatric one that can be dealt with by a solid dose of cognitive behavioural therapy with, possibly, a dash of graded exercise thrown in for good measure.

Nowhere is that line of thinking more obvious, and sometimes more damaging, than when we consider the growing number of cases of children with ME. Here I must declare an interest. My youngest son Christopher, aged 15, having shown signs of a lack of energy for some years, especially when something extra occurred on top of his normal routine, virtually collapsed on 29 December 2000. He became acutely light-sensitive; his sleep pattern altered alarmingly; his physical energy almost disappeared; and his mental energy did disappear. This was a boy who loved school, who was doing very well academically and who, two summers ago, was on the verge of playing cricket for Scotland at under-

15 level. Today, he would have trouble holding a bat aloft for more than a few seconds and although he might manage to walk the length of a cricket pitch, he certainly could not run it.

Medical opinion suggested that we give it six months to see whether the condition would clear up and also suggested a visit to the psychiatrist. Those are two phrases with which people in the public gallery who suffer will be all too familiar. [Applause.]

Photo of George Reid George Reid Scottish National Party

Order. I do not want to be rude, but the rules of the Parliament do not allow people in the public gallery to applaud. If we allowed applause, we would have to allow criticism. I say gently to people in the gallery that it would be appreciated if they did not applaud.

Photo of Alex Fergusson Alex Fergusson Conservative

I thank you for your tolerance, Presiding Officer.

Fortunately, we were put in touch with a remarkable doctor—Dr Nigel Speight in Durham—who has long fought the causes of children with ME against strong opposition from within the NHS. He instantly diagnosed Chris as a classic case of ME, allowing us to react accordingly.

My wife and I consider ourselves lucky. We have the resources and the back-up to allow us to follow up contacts and leads that may help our son to recover, but there are hundreds and possibly thousands of parents out there who are much less fortunate than we are. I draw members' attention to a recent case involving a child with ME who was forcibly removed from home by social workers, who arrived unannounced and accompanied by police officers, and took the child into care.

Children can be and are being forced into totally unsuitable psychiatric treatment, which can be the worst possible treatment for their condition. Therein lies the crux of the problem. In some cases, such treatment works—different cures help different cases in adults and children. However, confusion and argument exist where there desperately needs to be harmony and agreement.

Great work is being done in the field of ME by very few people, and I specifically mention Dr David Mason Brown, Dr Vance Spence, Dr Darrel Ho-Yen and Dr Abhijit Chaudhuri. Those doctors have been a great help to the cross-party group in the Parliament on ME. I also mention the work on ME in young people that is being carried out by the Tymes Trust. Others are doing research despite the desperate difficulty of acquiring funding for such research.

That is the point of the motion. I should say also that the motion has taken on a whole new relevance since the publication two weeks ago of the report of the chief medical officer in England. I believe that Scotland can and should take the lead on the issue. We have the expertise; we certainly have the patience. We now need only the political will to bring everything together.

The best—and I would suggest the only—way to accomplish that is for the Scottish Executive to establish a centre of excellence for research into the causes of and cures for ME. If I may say so, the cost would be a fraction of the cost of establishing a football tournament in Scotland, which we have just been talking about.

Even the most willing GP—and they are growing in number all the time—needs a simple diagnostic test for ME and other related syndromes. Such tests do exist, but they need the official recognition for which the CMO's report calls. The brave people in the gallery tonight, nearly all of whom are sufferers, deserve no less. They have put up with far too much, or perhaps I should say too little, for far too long, to receive any less.

I am proud to debate the motion tonight.

Photo of George Reid George Reid Scottish National Party

Sixteen members have asked to participate. I doubt whether all of them can be called. In view of that fact and of the crowd in the public gallery, I would be prepared to extend the debate to 6 o'clock. I would be grateful for a motion without notice.

Motion moved,

That, under Rule 8.14.3, the debate be extended until 6.00 pm.—[Alex Fergusson.]

Motion agreed to.

Photo of Janis Hughes Janis Hughes Labour 5:12 pm, 23rd January 2002

I congratulate Alex Fergusson on securing this important debate and on the work that he has done in the cross-party group in Parliament on ME.

When I spoke a few months ago in a debate on dementia, I spoke of the need for more research into the causes of that particularly debilitating condition. The need for more research on myalgic encephalomyelitis is just as great.

It is only in the past few years that people have even begun to accept that ME exists. Last week, when the UK chief medical officer, Sir Liam Donaldson, commented on the working party report, he described ME as having been

"a disease in the wilderness".

Although many influential health bodies now recognise ME as an illness, a tremendous need remains for further study into the causes of ME. Perhaps those who are still in doubt should listen to the words of Joe Kilmartin who is secretary to the Cathcart and south Glasgow ME support group, to which many of my constituents belong—several of whom have made their way through to Edinburgh this evening. In an e-mail sent earlier this week—I know that Mr Kilmartin will not mind me repeating his statement—he said:

"This illness can rob the patient like myself of life. There is no dignity in having one's 11 year old daughter cut up my dinner as holding a knife and fork is too hard, or not being able to walk to the end of the street for a paper in case I have not got the energy to get back again."

Primarily, I want to echo the comments made by Alex Fergusson and state the need for further research. We need to answer two simple questions. What is ME and what can be done about it? Without the answers to those questions, it is not possible to undertake the health needs assessment that is necessary to ascertain what represents an adequate network of services to provide help to sufferers and their families, many of whom—as Alex Fergusson said—are in the public gallery tonight.

Other questions also need to be answered. How many children and adults have properly defined ME? Is ME caused by abnormalities in the immune system? To what extent do psychological and social factors influence the outcome? Research into the basics is needed and must be properly funded.

Alex Fergusson's motion mentions the research that has been undertaken by Dr Pheby in Bristol and Dr Spence in Dundee, but we must also recognise the research that has been done by Dr Chaudhuri at the Southern general hospital in Glasgow.

It is all too apparent—I am sure that it will become even more apparent in other speeches—that funded research into the illness is needed. As a member of the cross-party group on ME, I hope to continue to support that need.

The Executive must look towards providing more research and funding for research. I hope that the minister will take on board the concerns that have been expressed on behalf of the people in the public gallery and the many others in our communities who suffer from ME. I look forward to hearing the minister's response.

Photo of Fergus Ewing Fergus Ewing Scottish National Party 5:16 pm, 23rd January 2002

I congratulate Alex Fergusson warmly on securing the debate. I imagine that it must have been a difficult speech for him to make. I am sure that we are all aware that ME has touched his family and that we wish Christopher well.

About a year ago, I received a letter from a constituent. I spoke to her today. She does not want her name or her daughter's name to be mentioned, but she said that I could call her daughter Georgina. Her letter read:

"I am writing to you to highlight the problems faced by people with ME, and to appeal to you to do all you can to further research and understanding in this area.

This is a poorly understood condition, which some Doctors still fail to acknowledge as real, and not "all in the mind". This illness can have a devastating effect on the sufferer and their family made worse by the prejudice and lack of understanding surrounding it.

It is time the Government did something about ME. It is real and does not go away if you ignore it. Many young people are affected with consequent waste of potential, and cost to the country in supporting someone with a long-term illness. These people, in addition, often face an extremely long wait, while waiting to hear about Disability Benefits, all the while being ill and in need of the financial help.

My eleven-year-old daughter"—

Georgina— "has suffered from ME for 4 years now. As a family we have found this extremely difficult. At the moment she is very disabled, being bed-bound most of the time, needing a wheelchair to get around, and a full time carer to help her at all times. She has had episodes of fever, suffers from chronic pain in her limbs, headaches, nausea, severe abdominal pain, sleep disturbance, severe exhaustion all the time, and now in addition "fit-like" episodes of severe muscle twitching. This is her third severe relapse. She was hospitalised in 1998 for 9 months with associated anorexia, and accompanying problems all associated with ME." In all the speeches that I have made in the chamber, I have never read out so much of a letter. I did so because I could not improve on the description that my constituent gave of the tragic plight of her and her daughter, who suffers the dreadful condition. As any other MSP would, I took up her case with the relevant authorities and received fairly sympathetic responses from Heather Sheerin of Highland Primary Care NHS Trust, who described the process of diagnosing the disease as a diagnosis of exclusion, and from the previous Minister for Health and Community Care. I am sure that all members subscribe to the proposals that Alex Fergusson described.

Since that letter was written, Georgina has spent four months in Yorkhill hospital and was in a coma—or shutdown, as some call it. Recently, she has come out of that and is making progress. I praise the neurological ward at Yorkhill, which has given my constituent and her daughter some succour.

I hope that the debate will lead to a slightly better understanding of this dreadful disease.

Photo of Margaret Smith Margaret Smith Liberal Democrat 5:19 pm, 23rd January 2002

I thank Alex Fergusson for securing the debate, for his speech and for his contribution to the cross-party group on ME. I welcome the ME sufferers who are with us. We can only imagine how difficult it must have been for many of them to take the trouble and the time and to make the effort to join us.

As many as 15,000 Scots have ME. Some are as young as six. A significant number are affected in their teens and early 20s. For many of them, ME means a life without work and without the relationships that could have been formed at that critical stage of their development. It is a life with little hope of recovery: there is no cure for this chronic disabling condition. Twenty-five per cent of sufferers will remain incapacitated—many are bed-bound for the rest of their lives. That is why the research that has been called for is so necessary.

The main symptoms are fatigue bordering on exhaustion, lack of concentration, sensitivity to touch, pain, light and sound and acute muscle pain. It is clear that the impacts are not simply physical: more than 50 per cent of sufferers have felt suicidal as a result of their condition.

One of the most welcome facets of the recent report of the working group in England is its recognition that ME

"is a genuine condition that imposes a substantial burden on patients, carers and families" because, for many years, elements of the medical profession and the public, reacting to press reports of yuppie flu and the like, dismissed sufferers. That continues today. Sometimes, sufferers continue to be denied the benefits they rightly need because doctors fail to recognise the existence of the condition and its impact. I associate myself wholeheartedly with Alex Fergusson's comments.

The physical impacts vary from patient to patient, which has contributed to difficulties in diagnosis, but the working report sets out that ME

"lacks specific disease markers but is clinically recognisable."

I am sure that all colleagues have received letters on the subject from constituents. In the past few months, I have met some of them to talk about the issue. The vast majority seem to have had difficulties and delay in being diagnosed. One constituent highlighted the fact that she had to wait six years. When, finally, she was diagnosed, she described it as a "turning point" from which she was able slowly to regain something like a normal life.

Photo of Angus MacKay Angus MacKay Labour

I am grateful to the member for giving way for a number of reasons, not least of which is that I suspect I may not be called to speak. I want, therefore, to make a couple of brief comments. I congratulate Alex Fergusson on his outstanding contribution in securing the debate and on his speech.

I want to comment on the point Margaret Smith has made and which has been reflected in other speeches. I do not pretend to be an expert on the subject in any way, shape or form, but what is clear from the briefing we received and from constituents' letters is that the illness, which is painful and difficult to deal with, is but one part of an equation. For many people, a greater part is the thought that, unlike those who may require a heart by-pass or a hip replacement or treatment for a stroke, there is no clear course of action to be taken because GPs and the health service are not placed coherently to diagnose and treat the disease. It is hopelessness that contributes to so many of the problems that are associated with the disease.

Photo of Margaret Smith Margaret Smith Liberal Democrat

While asking for a bit more time to continue with my speech, I associate myself wholeheartedly with Angus MacKay's comments: there is the question of diagnosis.

There is also the question of examining a range of different issues. That is why it would be useful to have a centre of excellence that would examine research on the subject. Another constituent pointed out that if services are not in place,

"a diagnosis is as much use as a jelly watch."

I agree with Janis Hughes: we need to identify exactly what services we need. That is another reason why we need research on the subject.

In the past, clinicians would tell patients that if they continued to feel fatigued they should come back six months later, but the condition would only get worse. We would not accept that attitude from clinicians in other specialist areas such as cancer and we should not expect it in relation to ME.

The latest working group says that

"a 6-week point from onset of abnormal fatigue is a more useful marker".

That is a move in the right direction.

GPs can undertake screening investigations, but it would be useful for them to be part of a multidisciplinary approach that would see them backed up with physicians, paediatricians, psychologists, therapists and nurses. One thing—

Photo of George Reid George Reid Scottish National Party

The member needs to come to a conclusion.

Photo of Margaret Smith Margaret Smith Liberal Democrat

Right. Patients need to be listened to. Some of the figures that emerged from the Action for M.E. membership survey are interesting. One said that two thirds of people saw a benefit from a change of diet or when they had been given nutritional supplements. That is an area in which more research should be undertaken.

Photo of Susan Deacon Susan Deacon Labour 5:24 pm, 23rd January 2002

I join other members in congratulating Alex Fergusson on securing the debate. I also congratulate a range of colleagues and others who have been involved in the cross-party group on ME since the inception of the Parliament. They have worked relentlessly to raise awareness of the condition.

Like many others, I have moved over the years from a position of relative ignorance to a gradually growing awareness. First I had experience of a friend suffering from the condition, then a colleague and then a relative. Latterly, over the past few years, I have heard directly from several of my constituents who have been affected.

During my time as Minister for Health and Community Care, I heard much about the condition. What frustrated me enormously, perhaps more than was the case with other conditions, was our inability to deal with it, not least because, unlike most conditions, there was not even agreement about ME's existence or what it meant, let alone what could be done about it. For that very reason, as Alex Fergusson said, the significance of the recent publication of the report of the independent working group on ME should not be underestimated. We now have something that has brought together patients, carers and, crucially, the medical profession, with an agreed analysis of the problem and an agreed series of recommendations on what should be done about it.

I would like to concentrate my remarks on making a plea to the Executive to ensure that, now the report finally exists, action is taken. It has been a long time in coming and I know that many people have waited anxiously for it. I hope that it will now be put to good use. I would like to add a few suggestions as to what I hope the Executive will do with it.

It is important that a specific group or mechanism is put in place in Scotland to take the report forward. The role of that group or mechanism should not be to revisit the report or to reinvent the wheel of the analysis it contains, but to act on it and develop the work that has already been done. I also urge the Executive to ensure that patients and carers are kept involved in that process. What flows from the report will be all the more effective if they are directly involved in shaping the actions.

Any action that is taken should look beyond health and include other agencies and organisations. I am thinking particularly of social work departments, which could have a wider role in supporting individuals and their carers, and of schools, which should be able to recognise and deal with the condition more effectively for the many young people who are affected.

I know that the cross-party group and others have argued for some time for a specialist centre. I am sure that that degree of expertise or specialisation in Scotland could take a number of different forms. There is certainly a need to ensure that there is some concentration of expertise here in Scotland so that people do not have to travel south of the border, as happens at the moment.

I can see you looking at me and at the clock, Presiding Officer, so I shall conclude my remarks by asking for specific attention to be given to the impact the condition has on young people. I am pleased with the report of the independent expert group in that regard, but it is worth reiterating that point. I pay particular tribute to Alan Stroud, one of my constituents. Many members will be familiar with him because of the effort he made to give evidence to the Public Petitions Committee a few months ago. He and his family have repeatedly raised the issue with me as their constituency member. Hearing about their experience has had an impact on members and I hope that this debate tells Alan and others like him that we have been listening and that we will act.

Photo of Lord James Selkirk Lord James Selkirk Conservative 5:28 pm, 23rd January 2002

I am glad to follow Susan Deacon's thoughtful and helpful speech. ME is a very real and distressing illness, the causes of which are still not fully known or understood. It affects not just adults, but teenagers and children, some of them as young as six years of age, and it can affect people from any walk of life. It is therefore no respecter of age or social circumstances. There is no known simple cure. The symptoms are many and varied and affect different people in different ways, but a key characteristic is chronic fatigue, coupled with difficulty in concentrating, muscle pain and increased sensitivity to touch, pain, light and, possibly, sound.

Diseases whose main hallmark is chronic fatigue have been around for a very long time. As Alex Fergusson said, even such stalwarts as Florence Nightingale and Charles Darwin may have suffered from ME or something akin to it. Today, as many as 15,000 Scots could have the disease. That is more than have multiple sclerosis.

That the disease seems to be getting much more common and to be affecting younger people is even more alarming. For years, the illness was dismissed as yuppie flu. Among those who are uninformed, there is still considerable scepticism about the veracity of the disease. That can discourage sufferers from seeking medical attention. The condition is neither benign nor unimportant. The persistent inability to tackle ME scientifically and objectively has hindered progress in establishing the causes of the illness. The causes remain difficult to diagnose.

ME is considered to be a nervous disorder, but there is no specific or sensitive laboratory test for it. Diagnosis depends on careful history taking, physical examination and appropriate screening investigations. Such investigations may now be carried out by general practitioners, many of whom are able to make a correct diagnosis despite the fact that scepticism about the existence of ME as a clinical entity is still rampant. The longer diagnosis and treatment of ME are delayed, the more sluggish the person's circulation becomes and chronic fatigue symptoms become more pronounced.

To avoid ME reaching serious proportions in a generation, patients must be diagnosed as quickly as possible and Scotland should live up to its proud reputation for medical research. As the motion suggests, the Scottish Executive should start the process in the UK by commissioning further invaluable research under the remit of the national health service to establish the causes of, and cures for, this distressing and debilitating disease.

Edinburgh is rightly regarded as a great centre of medical learning in the world. I have great pleasure in supporting the motion in that context.

Photo of Nicola Sturgeon Nicola Sturgeon Scottish National Party 5:32 pm, 23rd January 2002

I join colleagues in congratulating Alex Fergusson on securing this important debate, which will be important in raising awareness about ME.

Susan Deacon was right to speak about the growing awareness of ME, but that should not mask the considerable ignorance that still exists in Scotland about the condition and its symptoms. ME sufferers do not simply experience fatigue. In general, they regularly experience many other symptoms, such as sore throats, muscle pains, headaches, disturbed sleep, digestive problems and depression.

There is also ignorance about the fact that the condition affects a great many people in Scotland—many more than are affected by higher profile conditions. In Scotland, some 15,000 people are thought to have ME. They include people of all ages, all social classes and men and women, although women are slightly more at risk than men.

The effects are severe. For young people, there can be disruption to education. There can be disruption to family life, work life and other serious effects. Despite that, and Scotland's history and record in medical research, we still do not have answers to basic questions—as Janis Hughes said. We do not know what ME actually is or who has it. There is no diagnostic test for it, as Fergus Ewing and Lord James Douglas-Hamilton rightly said. Diagnosis is still primarily done by excluding other conditions. That is not good enough.

Some members have rightly said that more research into the condition is needed. More publicly funded research is needed. Alex Fergusson said that there is expertise in Scotland. There is a need to carry out research here. We could engage in initiatives that would go a great deal of the way to beginning to find some answers to basic questions without involving an enormous investment of public resources.

Many members want to speak, so I will be brief. I am glad that the issue has united members and that the deputy minister can offer a positive contribution.

Photo of Robin Harper Robin Harper Green 5:34 pm, 23rd January 2002

On behalf of Tommy Sheridan and myself, I congratulate Alex Fergusson on bringing the debate to the chamber. It has been extremely informative. Before the debate, I took the subject of ME seriously. I take it even more seriously now.

I will restrict my remarks to expressing one concern, which is about what happens to young people at school who are diagnosed with ME, or to those who suffer from ME but have not been officially diagnosed. In such cases, although the child has not been officially diagnosed, the parents might suspect that their child suffers from ME. Although I have no evidence to substantiate this, I suspect that there might be an inconsistency in local authorities' guidance on education provision for young people who suffer from ME. That might be because there is a tendency to live in hope—there is no hurry to take action when a child has ME because they might be back next month, in six months' time or after a year—but if a child suffers from ME, there is a great deal of urgency for the appropriate education to be given. From my experience, home education is a possibility; schools can arrange for work to be sent home. We need something more structured than that as soon as young people are suspected of suffering from ME, let alone diagnosed.

Photo of George Reid George Reid Scottish National Party

I now call Dorothy-Grace Elder, to be followed by Christine Grahame. I ask Mr Muldoon to be patient, because there is a surfeit of SNP members.

Photo of Dorothy-Grace Elder Dorothy-Grace Elder Independent 5:37 pm, 23rd January 2002

Sorry about that, Bristow.

I thank Alex Fergusson and his son, who has done a public service by allowing us to hear his case in the Parliament. That is not easy for a young man who is at an age when young people tend to be easily embarrassed. I thank him for championing this great cause.

My first encounter with ME was in 1989, in Dunoon, where I attended a fatal accident inquiry. As I approached the witness room, I heard some people giggling and sniggering away, saying, "Oh! There is somebody in there who must be drunk." So I went in. Someone was lying prostrate on a bench. The lady lifted her head, having heard that horrid little remark, and said, "I am not drunk. I am an ME sufferer and it's taken all my strength to get here." She turned out to be an expert witness in the inquiry, and a doctor. It was a great struggle for that woman to get a boat to Dunoon and back, but she did her duty to testify at that inquiry. She was an ME sufferer who was trying desperately to cling on to her job and normal life—which many ME sufferers cannot do.

The Health and Community Care Committee was moved by direct testimony from a young man who is an ME sufferer. Indeed, we had the most moving and eloquent testimony from the mother of a little girl who is virtually a prisoner all day in her bedroom.

Alex Fergusson stated that his son was a champion cricketer but can now barely lift a bat. It is our duty to find out what is striking down our young people in what should be their best years. We do not know why this tragedy is on the increase, but we do know that there is still profound ignorance about ME, even in the medical profession—but thank goodness it has been declared properly to be a physical condition.

I suggest to the Deputy Minister for Health and Community Care, Hugh Henry, that we might all get together and consider what sort of literature should be sent to every general practitioner in Scotland to inform them about ME, never mind the ME patients—which would be another breakthrough. That would show Parliament's solid support for those patients.

The big problem has been to get rid of the ancient, awful Scots medical mantra that a general practitioner utters when he or she does not know what on earth he or she is talking about. In such cases the general practitioner recommends that a patient see a psychiatrist, who in turn often does not know what he or she is talking about either. As a result, ME patients have been through what Dickens called the Circumlocution Office, looking desperately for help. It is the Parliament's duty to help those patients and to tell Alex Fergusson, his family and everyone in the gallery that we owe them respect and action.

Photo of Christine Grahame Christine Grahame Scottish National Party 5:40 pm, 23rd January 2002

I say "Well done" to Alex Fergusson and John McAllion for their work on the cross-party group on ME. I cannot get to the group's meetings often enough because of other commitments.

I came to the group because I have a friend with ME. If one sees him in the good times, it is hard to believe that he was once in a wheelchair. I know that he must be going through a bad time now because his e-mails have stopped. He is very politically active. I get hordes of e-mails and then there is silence for months. I have discovered that, at the moment, he hardly has the energy to switch on a television or follow anything. The swings and roundabouts of this dreadful illness are what brought me to the cross-party group.

I asked him what I should talk about in this debate, and he mentioned the issue that was raised at the cross-party group meetings, which was benefits. People with ME find that benefits are a problem; for example, the disability living allowance form asks questions such as the number of steps that applicants can climb. The point is that although those people might have been able to do it yesterday, they cannot do it today and they do not know whether they will be able to do it tomorrow.

My friend has had the illness for decades and explained that he copes with it by managing it. However, if something goes wrong—for example, if he does something in a hurry—it might then take him two or three hours even to put his hand to his face in order to shave. Although the World Health Organisation has recognised this peculiar but real illness, I must stress that ME sufferers' huge difficulties with benefits have been severely neglected. People have to go through many appeals before any benefits might be granted.

Robin Harper mentioned young children, who face great difficulties with having their illness recognised. I must point out that there are problems with professionals in this respect.

Before I finish, I want to mention the written parliamentary questions on this subject that I asked when Susan Deacon was minister. In one question, I asked whether the Scottish Executive would

"undertake a national audit of the services which are available to those who have myalgic encephalomyelitis." —[Official Report, Written Answers, 22 May 2001; p 249.]

I was advised that I should wait for the report. Now that the report has been published, will the minister undertake an audit of the available services? Furthermore, will he answer the other questions that I lodged about involving professionals in understanding the illness to get rid of any prejudices and the idea that it is simply psychosomatic?

Photo of Bristow Muldoon Bristow Muldoon Labour 5:42 pm, 23rd January 2002

I also congratulate Alex Fergusson on securing this debate today and on his work in the cross-party group on ME. Furthermore, I want to pay tribute to the people in the gallery, many of whom suffer from ME or care for ME sufferers. The commitment shown by the people who have campaigned on this issue for so many years is all the more worthy given that although many of them suffer from this debilitating illness, they still find the energy to bring the issue to our attention.

We find ourselves in the almost unique situation of having a widespread outbreak of consensus in the chamber on this subject. Indeed, it is unique to find Nicola Sturgeon and Susan Deacon almost agreeing on a health issue. Long may that continue. I think that that shows the degree of consensus in the chamber over the need to improve how we tackle this particular condition and to conduct further research into it.

I hope that the minister will respond positively to the points that have been raised and base his comments largely on the report published by the chief medical officer for England and Wales. The report contains a number of recommendations that should be welcomed. I am sure that many of the people who suffer from ME will welcome the chief medical officer's clear recognition that it is an illness.

I want the minister to respond to the key question of research. We need further research into the causes of the illness. Once those are fully understood, we can then carry out research into the issue of treatment. The minister should also respond to the question of support for the care of ME sufferers, which is another issue that emerges from the chief medical officer's report.

The final issue that I want to touch on is the need to educate professionals in the health service. As members have said, there are still people in the health service who are sceptical about the status of ME as an illness. We should undertake to produce a programme of education for health professionals to ensure that everyone has their illness properly recognised.

Photo of Dr Winnie Ewing Dr Winnie Ewing Scottish National Party 5:45 pm, 23rd January 2002

It is up to all of us to use whatever power we have in our areas to alter the attitudes of the sceptical doctors, health boards and hospitals. We have witnessed the courage and dignity that Alex Fergusson brought to his very sad story. We can all relate equally sad stories from our own experiences of the cases of personal friends.

I agree with the points that all members have made, but I have a final point to make that I do not think that anyone else has made. My friends who have ME are not depressives or psychiatric cases but cheerful people who are active and ready to play a full part in society, yet they are being accused of needing psychiatric help. Our efforts could lead to a change in attitudes. I ask the minister to ask the heads of our medical profession in Scotland to take a leaf out of the book of the heads of the English medical profession.

Photo of George Reid George Reid Scottish National Party

I apologise to Bruce Crawford and Linda Fabiani, who wished to speak but who were beaten by the bell.

Photo of John McAllion John McAllion Labour 5:46 pm, 23rd January 2002

I congratulate Alex Fergusson warmly on securing this important debate. I wish that he would tell me how he managed it, as I have been trying to do so for some time.

Photo of John McAllion John McAllion Labour

Maybe it has something to do with the party.

I also congratulate Alex Fergusson on the very effective and moving way in which he introduced the debate. Above all, I congratulate the 16 members who asked to speak in the debate and the 33 members who, at one time or another, were present during the debate, all of whom come from different political backgrounds—socialists, greens, Tories, Liberals, nationalists—but all of whom are united not only in support of Alex Fergusson's motion, but in the demand for justice for this long-neglected group of sufferers. That group has tragically been ignored in Scotland, but their time has surely come.

Photo of Alex Fergusson Alex Fergusson Conservative

Now that I have milked the praise of every member of Parliament for securing the debate, I have to point out that the motion was lodged in the name of the cross-party group and on behalf of ME sufferers throughout the country. It has nothing to do with me; it is the work of that group.

Photo of John McAllion John McAllion Labour

The final tribute that I pay is to the campaigners who are in the public gallery today. It is down to their efforts that we have a cross-party group on ME in the Parliament and that the debate has been secured. It is down to them that the issue is, at long last, on the political agenda of this country.

I do not want to go over all the points that have been made, not least because you will not let me, Presiding Officer.

Photo of John McAllion John McAllion Labour

I turn to the document "Our National Health: A plan for action, a plan for change". It is a kind of blueprint for the first-ever devolved NHS in Scotland. It contains a vision of a different kind of NHS and is full of fine phrases. For example, it states:

"We must build an NHS which listens better to patients and responds more effectively to their needs."

It calls for an NHS that puts the experience of patients at the heart of service changes and

"gives patients a stronger voice."

No member would disagree with that vision for the NHS, yet it mocks the reality of the experience of ME sufferers in their daily contact with the NHS. They are not a fringe minority of people but a substantial part of Scottish society.

The motion talks about the condition

"growing in incidence among both adults and children".

We do not know how many sufferers there are in Scotland because nobody in authority has so far bothered to try to find out. All that we have to go on are the surveys that have been conducted by ME groups. We are not completely in the dark. Those surveys estimate that there are around 15,000 Scottish sufferers, of whom 2,000 are children. All of them have had experiences of the NHS that are described in the CMO's report as "largely negative". Indeed, their experience of the NHS is that it has left them feeling isolated, misunderstood and, worst of all, ignored by those in authority who do not know the real nature of the illness. That is something that we have to change quickly.

I was impressed by Susan Deacon's speech, not least because of who she is and the insight that she has into the way in which the health service works in Scotland in the 21st century. I was delighted to hear her say that we are listening now because, not so long ago, lots of people in the NHS were not listening to the experience of the sufferers. I was also delighted by her plea for action. However, I do not want anyone to get confused in this debate between the call for a national centre of excellence and the call for local services provided by local NHS boards. Those two calls are not mutually exclusive but complementary—one should not be used to argue against the other. Both initiatives need to happen, which is what the campaign aims to achieve.

That and many of the other aims of the group—for example, the research that Alex Fergusson mentioned, the establishment of a needs-assessment programme for epidemiology studies, the challenging of the World Health Organisation's classification of ME as a psychiatric condition and the resolution of the benefits issue that has been referred to by a few speakers—are not going to go away. The cross-party group in the Scottish Parliament on ME will not let them. We are going to continue to address those issues and demand action from the Executive on them.

ME sufferers have been badly neglected not only by the NHS in the UK but by the Scottish NHS. We need action from the minister. He needs to tell us what kinds of services will be provided in the future and the ways in which the needs of this group are going to be addressed as they have not been addressed in the past.

Photo of Hugh Henry Hugh Henry Labour 5:51 pm, 23rd January 2002

The debate is timely, given the publication this month of the report of the English chief medical officer's working group on care for people with ME or—for those who prefer to use the other definition—CFS/ME.

We are all aware that, as many members have said, conclusive knowledge of the cause and development of this condition has eluded the best efforts of researchers. That elusiveness can too easily lead to frustration when we see the impact that ME can have on our nearest and dearest, particularly children. Alex Fergusson spoke movingly of the direct impact that the condition has had on Christopher and the way in which he has had to face up to a significant change in his life.

I congratulate members on the positive and informed debate that we have had on a difficult subject. John McAllion is right to draw attention to the number of members who requested to speak and who have attended the debate and to the number of people in the public gallery. That is significant and reflects the fact that this debate deals with a growing problem. One of the difficulties with the willingness to participate is that I cannot possibly cover all the issues that were raised tonight. That is an indication that there has to be a longer and more informed debate in Scotland about ME.

Photo of Bruce Crawford Bruce Crawford Scottish National Party

Does the minister agree that there must be not only more research, but a change of culture at the heart of Government and in all organisations that are associated with Government? The culture must be changed to reflect the fact that ME exists and to ensure that action is taken and that barriers are removed rather than obstacles being created. If we consider the problem from that perspective, we can make substantial changes.

Photo of Hugh Henry Hugh Henry Labour

Bruce Crawford is right: there is a need to change the culture. Winnie Ewing and others referred to the need to change the culture in the medical profession, Robin Harper spoke about education and John McAllion and others spoke about the problems in the wider NHS. I agree that the culture in Government must change significantly as well.

The report of the English chief medical officer's working group on care for people with ME is welcome for a number of reasons. It should lay to rest the controversy over whether the condition is real, which has sometimes been a barrier preventing sufferers from obtaining good-quality care. It is important that the report gives due weight to the views and experiences of patients.

Photo of Linda Fabiani Linda Fabiani Scottish National Party

Is the minister aware of tests that have been carried out in the United States of America and Europe? DNA testing has identified the presence of bacteria in the cells of ME sufferers—those bacteria are difficult to find. That seems to detract from the idea that ME is psychological and psychosomatic. Is the minister willing to examine that research with a view to having similar research carried out in Scotland to try—once and for all—to negate the myth that ME is a psychologically caused disease and to find out whether there is a physical cause?

Photo of Hugh Henry Hugh Henry Labour

I will return to research later.

The debate gives us an opportunity to state clearly that some of the myths, scepticism and prejudice that have existed should be consigned to the past. Alex Fergusson, Christine Grahame and others have spoken about sufferers whom they know. I, too, have a close relative who has suffered. One point that has been echoed tonight is that a sufferer can go from being active—and almost, in my relative's case, from having to be chained down to stop them going to work when they were not well—to being suddenly physically incapable of going out of the house, not understanding what is wrong with them and not being able to turn to anybody who can give them assistance and advice. We must consider that.

Another welcome feature of the report is its emphasis on the need for evidence-based practice. Because so much remains unknown or uncertain about the condition, it is easy to assume that there has been little research. That is not true: there have been more than 1,000 medical research publications. As we speak, nearly 30 research studies are being carried out in the health service. As is often the case, the quality of the published research varies widely and care is needed in its interpretation.

Susan Deacon and others made some useful suggestions. She spoke about the need for action now that the report is published and about a mechanism to take the report forward. John McAllion spoke about identifying how we support the needs of ME sufferers. We will respond to those requests by setting up a short-life action group to consider over three months the most effective ways of improving the care and quality of life for those with ME.

The information from that group will be made available to the NHS at all levels in Scotland. Speakers tonight have been right: we need to ensure that doctors and everyone else who is involved in the NHS are aware of the findings of the report and, more important, of some of the things that could and should be done to support ME sufferers.

The report's findings form a good platform on which to base our future research effort. We need to identify interventions that can be incorporated into routine clinical practice and to find out which therapies work best for which groups of patients. A number of speakers have mentioned the need for more research. Janis Hughes, Margaret Smith, Lord James Douglas-Hamilton, Nicola Sturgeon and Bristow Muldoon all correctly emphasised that need. However, research cannot be a substitute for action; we need to consider that.

The working group acknowledged in the report the lack of good evidence on incidence, prevalence and trends and recommended further research. The Department of Health in England has asked the Medical Research Council to draw up a research strategy, taking account of the working group's findings, other recent expert reviews and the views of patients and carers. The work will be advanced by an independent scientific advisory group. It is appropriate to state that the MRC is a United Kingdom body. It funds research projects throughout the UK and has frequent contact with our chief scientist office. We support the initiative to establish such a strategy and will provide whatever help we can. Until that strategy is available, it would not be sensible for the Executive to commission large-scale studies. There are also disputes about definitions.

Once the MRC's work is complete and the future strategic direction of research is clear, we shall of course be seeking to play our full part in the implementation of the strategy. We are not convinced at present of the arguments for a centre of excellence, but we need to consider some of the further research. Good-quality research proposals into other aspects of the syndrome will be considered by the chief scientist office through the usual peer review process.

Those who suffer from ME are a well-organised group of people, who have right and justice on their side. The fact that so many people are now suffering makes it imperative for us to respond appropriately. We must take people who suffer from ME out of the shadows of being regarded as cranks, malingerers and people who are trying to avoid facing up to reality. ME is a specific medical problem and, as members have said, we need to change attitudes and culture. We must ensure that local authorities, health services and others have the information that they need to provide a proper service to people who suffer from ME.

Photo of George Reid George Reid Scottish National Party

That concludes the debate. I give our best wishes to those members of the public in the gallery.

Meeting closed at 18:01.