9th June 2005
Debate on the subject of S2M-2852
A Cure for ME
Alex Fergusson MSP and others discuss the genetic research of Dr Gow and why research funding is desperately needed to help further fund this research with the aim of finding a real and potential cure for the chronic disease known as Myalgic Encephalomyelitis.
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Official Report 9 June 2005
Thursday 9 June 2005
OFFICER opened the meeting at 09:15]
The Deputy Presiding Officer (Murray Tosh): The final item of business is a members' business debate on motion S2M-2852, in the name of Alex Fergusson, on a cure for myalgic encephalomyelitis. The debate will be concluded without any question being put.
That the Parliament notes with pleasure that a scientific team from Glasgow University, headed by Dr John Gow, may have discovered a remedy for myalgic encephalomyelitis (ME) which could be available in as little as a year; further notes that the university has already patented the genes involved as a means of diagnosing the condition quickly and cheaply; recognises that this could represent a major step forward in the treatment and cure of this debilitating disease but notes with alarm Dr Gow's concern that he is "going nowhere" because his funding has run out, and considers that the Scottish Executive should take every possible step to ensure that this work can be continued in order that the 10,000 to 20,000 ME sufferers in Scotland can play a full part in the economic and social life of their country.
Alex Fergusson (Galloway and Upper Nithsdale) (Con): This is the second opportunity that I have had to bring the subject of ME to the Parliament for debate. I am very grateful to the members of all parties who, by signing my motion, have given me that opportunity.
The first debate, which was held in 2002, prompted the Scottish Executive to establish a short-life working group on ME; in fact, the group was originally described as a short-life action group, until the full implications of the acronym "SLAG" were realised. The group's report was published some 18 months later, following which the Executive asked all health boards to evaluate the situation in their areas and to report back. Well over another year later, they did so and their responses proved what we all knew anyway—that the health boards' efforts to diagnose and treat ME patients vary from the commendable introduction of a specialist nurse in the case of Fife NHS Board to no action at all in the case of Tayside NHS Board. In Dumfries and Galloway, staunch efforts are being made to establish a managed clinical network for ME patients, while in Orkney or the Western Isles, an ME patient will be hard pushed to find any sympathy at all.
Even ministers now accept that provision for ME sufferers in the national health service is haphazard at best. Rhona Brankin told the Health Committee:
"The information that we have received from the short-life working group and, subsequently, from NHS boards shows that provision is patchy—there is no doubt about that."—[Official Report, Health Committee, 26 April 2005; c 1909.]
The tragedy for ME sufferers is that it has taken almost four years to remove that doubt, during which time the number of sufferers has risen inexorably and the established therapies of cognitive behavioural therapy and graded exercise have continued to fail abysmally to bring about any measured improvements. We have continued to fail a growing patient group by sticking rigidly to the established—and establishment—thinking that ME is basically a psychological condition rather than a neurological disease, which no less a body than the World Health Organisation now recognises it to be.
Members might well think that I am somewhat biased in that statement and that the establishment has a much more open-minded approach than that. To prove that that is not the case, I quote what Dr Cornbleet, the minister's departmental adviser, said to the Health Committee:
"The treatments that clinical trials have verified as being of benefit are those that lie within the province of the psychologist and psychiatrist rather than the neurologist ... At the moment, the most appropriate referrals are to psychologists or psychiatrists."—[Official Report, Health Committee, 26 April 2005; c 1912.]
What Dr Cornbleet failed to say was that the number of patients who benefited from the treatments to which he referred—cognitive behavioural therapy and graded exercise—represented less than 10 per cent of the total number of patients who were involved in the trials and that a large number of patients got significantly worse. I am one of the many people who argue that if someone benefited from those therapies, they may well have had some form of chronic fatigue, but they did not have ME.
Although the Executive has given approximately £0.5 million to continue psychiatric research into the disease, it has given less than £10,000 to what I would call biological research. We need to ask ourselves one simple question. If our current approach to ME is sufficient and cost effective, why do we all know a family that is directly affected by the disease—I bet that that is the case—when 20 years ago, there was only a faint chance that we might have come across something that was rather cruelly called yuppie flu and which we did not take seriously at all? The answer is as simple as the question: it is because ME is on the increase, in spite of the best efforts of the establishment. In other words, I am suggesting that established thinking is wrong. It is time to admit that and to begin to think out of the box on ME.
Several years ago, the philanthropic Barclay brothers funded a research project—through the University of Glasgow—at the Southern general hospital. The project has been led by a number of eminent neurological researchers whose names
are revered by ME sufferers almost as much as they are disapproved of by the establishment. Drs Behan and Chaudhuri are but two of them. Several years on and, crucially, many funding streams later, the research is close to achieving a major breakthrough in identifying both a diagnostic test and a cure for ME through the relatively new science of genetics.
By studying the microarray analysis of gene expression in ME/chronic fatigue syndrome patients, the researchers have generated a comprehensive map of gene expression by whole-genome DNA microarray assay for people with ME/CFS. In the absence of Stewart Stevenson to explain to members what that means—I am sure that he would have done so—I will say it again more simply. The genes that are responsible for the disease have been identified. Equally, or even more importantly, a cocktail of drugs to counteract the genetic imbalance is also believed to have been identified. To put it at its most simple, a cure is on the horizon.
In Scotland, we stand on the brink of a medical breakthrough of world-wide importance. The University of Glasgow deemed the research to be of enough significance to patent, yet we are about to lose it through—members will have guessed it—lack of funding.
Just as all those years of research, which have always been done on a shoestring budget, are about to pay off, the shoestring appears to have broken. Latterly, the project has been part funded by Scottish Enterprise. The current project leader, Dr John Gow, applied to that agency again, but the application has just been turned down. Scottish Enterprise is to fund, through the University of Glasgow's research and enterprise department, an independent company to conduct market research into ME. I am sorry, but I find that project almost repulsive in nature. We do not need market research; we need biological research.
In an e-mail to me yesterday, Dr Gow said:
"This means that we have no clinician here to diagnose/treat patients and we have no funding for research staff or consumables. Many individual people and the ME Association/MERGE"—
which is a Perth-based charity—
"have been very kind and sent donations from £10 upwards. I now have a few thousand to keep my research assistant employed until the end of July. I will apply to other funding bodies for salaries/consumables but at the moment, everything stops at the end of July."
An estimated 15,000 to 20,000 Scots suffer from ME. Those people are desperate to return to school, college, university and the workplace to play a full part in the economic life of this country. I note the Executive's fresh talent initiative, but I point out the vast number of ME patients who are
desperate and willing to use their talents fully and yet are unable to do so because all we can offer them is a bit of graded exercise and some psychological mumbo-jumbo.
The CFS Research Foundation's latest newsletter states:
"'It is clear that in these patients the gene function has changed and these changes can be detected and measured.'
This Newsletter is being written with a feeling of profound thankfulness."
That profound thankfulness could well be shattered next month for the lack of a comparative pittance. The minister has the power and the authority to ensure that that does not happen. I beg her to use it.
The Deputy Presiding Officer: I have a very long list of members who wish to take part in the debate. Speeches will be of three minutes only.
Christine Grahame (South of Scotland) (SNP): It is a pleasure to support Alex Fergusson on his long pilgrimage to have some serious effort put into providing a cure for ME. He knows that I became involved after a friend of mine was diagnosed with ME. My friend has ended up in a wheelchair. He can now manage things to some extent, but, as ME is a spasmodic illness, he has bad spells. I have said in the chamber before that sometimes, when he does things too fast, the electrics go awry and he has to spend hours trying to shave. It takes ages before he can work his way back again.
It has taken an inordinately long time to discharge the label of yuppie flu. Thankfully, that is no longer around, although the thought still lingers in some people's minds that people with ME are "at it". Perhaps a minority of people are, but someone cannot be "at it" when they are in a wheelchair or when, if they do something quickly, they are debilitated for a long time afterwards.
I will not go into funding; one of my colleagues will address that. I also cannot repeat the eloquent information that Alex Fergusson gave to the chamber today. I want to mention the impact on and the difficulties for people with ME in accessing benefits; an issue that I have raised previously in the Parliament. If we do not pursue a cure, sufferers will be disadvantaged in several ways, because the tests that are applied for disability benefits are not relevant to someone with ME. They might be asked if they can walk up stairs or do certain tasks; of course, on one day they are able to do them and pass the test, but they might not be able to function for many days and weeks thereafter. They face a double whammy: they have an illness for which there is a possibility of a
cure that is not being pursued and they are also denied the assistance that is given to others who have illnesses that are, in some respects, visible.
I welcome the debate. I am sure that Alex Fergusson will be successful one day, as his determination certainly bowls me over. I hope that it bowls the minister over.
Dr Jean Turner (Strathkelvin and Bearsden) (Ind): It gives me great pleasure to support Alex Fergusson because, as a general practitioner, I have been in the position of wondering how to refer patients who suffer from ME.
ME is a terrible condition, because the family suffer. They look on, knowing that they cannot do much and that the national health service is not providing much assistance, which causes more unpleasantness.
Any illness carries with it psychological problems, especially if the sufferer cannot get any help. We have almost broken through and have nearly found a cure, so now is the time that we need to give support, and I sincerely hope that it will be like a steady drip that wears away a stone. We need a cure for people whose lives are being destroyed, especially young people who are not able to get to school. If somebody misses out at that time in their life, they sometimes miss out for the rest of their life and I would hate to think that that would happen.
I hope that the Kerr report's recommendations on chronic conditions will be implemented and that sufferers will be dealt with. We should be a caring nation and we cannot go on not caring for sufferers of chronic conditions. When we add ME sufferers to sufferers of multiple sclerosis, autism and other chronic conditions, it adds up to thousands and thousands of people—especially young people—whose lives are being ruined because we do not seem to want to do the necessary research and find out more about the conditions. It would be more cost effective in the long run if we did the research.
I praise Alex Fergusson for his tenacity, but nothing makes one more tenacious than having somebody in one's family who suffers from ME. It certainly sharpens the mind.
John Farquhar Munro (Ross, Skye and Inverness West) (LD): I am delighted to take part in the debate and I congratulate the convener of the cross-party group on ME, Mr Fergusson, on securing the debate. He does a tremendous amount of work on the cross-party group and has
done much to promote the issues surrounding the condition.
Until recently, the medical profession has not supported pleas from ME sufferers and has considered the condition to be more or less a yuppie flu. Whenever anybody presented themselves with ME, the doctors gave them the sloped shoulder, handed them a box of tablets and said that they would be all right the next week. The truth is that ME can strike at any time and can be most frustrating. Young adults who are fit, healthy and active are suddenly struck down and become lethargic, listless and morose. Great problems are created in families in which that happens.
Steady progress has been made on the issues through the cross-party group. That group has been assisted tremendously by the regular attendance, professional support and experience of the group members, many of whom have suffered from ME over many years or have witnessed members of their immediate family becoming listless, lethargic and morose. We are indebted to them for that professional support.
We have heard about the recent medical research, which appears to have developed a simple and effective cure for ME. That is excellent news, which must be publicised and promoted by health officials. It will be very much welcomed by the large number of people who have suffered with the condition over many years.
Now that we have established a potential cure for the ailment, which was, until recently, hardly recognised or accepted by many people in the medical profession, let us not miss the opportunity to lead the world in the research, development, treatment and cure of ME, which has been a scourge on our society for many years. I hope that the Executive can be encouraged to support financially the excellent work that has already proved to be so successful in the treatment of ME.
The information available to us suggests that only modest amounts of money are required to make the historic, groundbreaking research nationally and internationally recognised. The costs would be minimal, but the benefits to ME sufferers could be gigantic.
Mike Watson (Glasgow Cathcart) (Lab): I pay tribute to Alex Fergusson for moving with such alacrity to secure the debate following the announcement about the recent research by Dr Gow and his team at the University of Glasgow. Alex Fergusson's work in the cross-party group on ME has been prodigious. It may now be beginning to produce results.
I welcome Dr Gow's research. One of the comments that was made about it—I think by Dr Gow himself—was that it would allow patients with ME to live a "fairly normal" life. On the surface, that might seem to be a prosaic statement. In fact, it would mean a lot to ME sufferers if they were able to lead a fairly normal life. A diagnostic test has been developed, which can produce immediate yes or no results, instead of people having to wait six months, as they must often do currently. Alex Fergusson referred to the "biological research", or neurological work that has been sadly lacking in the field of ME for so long. As John Farquhar Munro has just highlighted, that work might go no further for the lack of just a few thousand pounds.
The very definition of ME is an issue. Differences of opinion are widespread, and go right to the very top of the medical profession. Needless to say, the psychiatric lobby dominates that utterly. The point is that it is ME patients who are bearing the brunt of that dispute, which simply must be brought to an end. A much more balanced approach must be taken to research on ME. It is ironic—that is the kindest adjective that I could attach to this—that when some research is carried out it may not be concluded.
The World Health Organisation has classified ME as a neurological condition, but Scotland's chief medical officer, when he visited the cross-party group at the end of last year, made it clear that he declines to do so.
NHS Greater Glasgow has now established a group called the CFS/ME wellness enhancement programme. That is a breakthrough as, hitherto, the board had refused to use the letters "ME" in any of the discussions that we held with it on the matter. That is welcome. However, the emphasis is still on cognitive behaviour therapy and pacing—aspects that Alex Fergusson outlined in his speech. That approach must be addressed.
The Deputy Minister for Health and Community Care might not like this, but I will quote to her words that she spoke at the Health Committee on 26 April this year on the question of ME. She said:
"I think that there are strong grounds for viewing ME as a neurological condition ... my professional experience of contact with people who suffer from ME suggests to me that it is a neurological condition."—[Official Report, Health Committee, 26 April 2005; c 1915.]
It is now time to build on those words and ensure that Dr Gow's research can be funded through to its conclusion. ME sufferers in Scotland have waited long enough. It is now time to open the door and let them walk through it, with the benefit of Dr Gow's research. I hope that the minister will act to ensure that that happens.
Robin Harper (Lothians) (Green): I am happy to support the second motion on ME in Alex Fergusson's name that we have debated. I remember that, during the first debate, I reflected on my experiences as a teacher of young people who suffered from ME. At that time, I called on the Executive to issue specific advice to teachers on helping young people who have ME, but it appears that nothing has happened in the interim. A survey of 445 members of the Association of Young People with ME showed that 80 per cent drop out or fall behind in their education because of their illness.
I was e-mailed only yesterday by a constituent whose son is now 20 and has lost seven years of his education because of ME—seven years of his life and 50 per cent of his possible education in school have been removed from him forever. It is vital that we protect the health of children who have ME. Experienced paediatricians confirm that teachers who do not understand ME are a key cause of relapses in young children.
I will make one point in the debate. My researchers checked with the Scottish Parliament information centre, which said that the Executive has not published specific guidance to teachers to support pupils who have ME, despite the call that was made in the previous debate. Will the minister ask the Education Department whether it will issue to all guidance teachers in Scotland specific instructions and advice for helping all pupils who suffer from ME?
It is possible that there is a specific reference to ME in the code of practice on additional support needs. I would welcome the minister's advice on that. Will the code of practice provide specific information on ME? I contend that it must. I thank Alex Fergusson for bringing the issue to Parliament's attention again and I support fully his call to the Executive to provide real funding for research, which could—at last—provide the answer for everybody.
Mr David Davidson (North East Scotland) (Con): I am proud to be a colleague of Alex Fergusson, who has been a passionate champion of the cause of ME sufferers since he was elected to Parliament. I also commend the work of the cross-party group on ME. I am sorry that I cannot attend its meetings as often as I would like to, because it is one of the most effective cross-party groups in Parliament.
We heard from Alex Fergusson about the managed clinical network in Dumfries and Galloway. If we can have one such network, why not have one for the whole of Scotland, rather than
operating health board by health board? We need joined-up thinking and application.
Many physicians and the World Health Organisation agree that ME is undoubtedly a neurological disorder. I wish that the minister would override some of the advice that she takes and broaden her mind a little on that.
It is all about research. One of the things that is being researched is the potential for a diagnostic test based on genetics. Without that test—I am talking not just about qualification for benefits and so on—general practitioners have no tools. It is starkly evident that very few GPs have any knowledge of what the condition is about and how to pick up whether somebody might have it. That is perceived as a lack of sympathy in the system, although I do not necessarily think that people genuinely believe that that is the case. The minister can influence that, if she so chooses.
The research is being conducted on a shoestring. When the possibility of developing a test and a cure is on the horizon, it is not the time to walk away and play Pontius Pilate; it is the time to reinvest. There should be checks and audits, but the research should be kept running and it should be supported.
Last night, two physicians came to talk to the cross-party group on diabetes. They brought up the realisation that many disorders are based on gene problems. The minister might care to listen to one small suggestion from me, which is that the Executive consider a linked centre—cross-unit, cross-university and not all based in one hall—for gene-based research with a rolling three-year budget. If one part of such a centre could deal with ME, I would be happy to see it as the primary one. We have to invest but, unless the Scottish Executive takes some responsibility, nothing will happen.
Ms Sandra White (Glasgow) (SNP): I congratulate Alex Fergusson on securing the debate. As Jean Turner said, his tenacity in pursuing the matter is most admirable. I have never seen anyone fight so much for something in the chamber or in a cross-party group. He obviously believes in the cause that he espouses.
Mike Watson mentioned something that I also want to pick up on, which is the fact that politics is being played by the medical profession in respect of ME. Doctors and professionals who do that should be ashamed of themselves and should think of patients rather than the medical profession. For the sake of the patients, they must stop playing politics with this issue.
I will read out just a few quotations from among the messages that I have received from people who suffer from ME:
"It is good to know that the MRC is giving some priority into research into ME."
"I would like money for research spent on looking into the physical causes of ME."
"There is an urgent need in my opinion that research be carried out".
"There needs to be research into the physical causes of this illness".
"There is a great need for better funding of research into the physical causes of this illness."
Alex Fergusson explained eloquently just how badly people are suffering. He and other members will have met constituents who suffer from ME and their carers, and will have tried to explain to them that although we in Parliament are doing our utmost, our calls are falling on deaf ears in the medical profession. Now, unfortunately, we must tell them that Scottish Enterprise, via the Scottish Executive, is also deaf to our calls. The situation is a sad one for me and people to whom I speak.
Every one of the quotations that I read out mentioned research, yet today we are talking about a team that is perhaps only one year away from finding a cure for ME being pulled apart because of lack of funding. The group originally contained Dr Chaudhuri, who is a fantastic champion for ME and has bashed away at the medical profession to convince them that research into the condition is needed. Unfortunately, we have lost Dr Chaudhuri. I appeal to the minister to ensure that funds are made available to enable research to continue. We must not lose any more researchers, as we lost Dr Chaudhuri. We must be able to say to our constituents and to people in Scotland who suffer from ME that we are prepared to allocate a couple of thousand pounds in order to see the research through in an attempt to find a cure.
John Swinburne (Central Scotland) (SSCUP): Alex Fergusson is to be commended for securing this debate. I have been a member of the cross-party group on ME since first I entered Parliament in June 2003. During that time, I have become increasingly alarmed at the manner in which the establishment has ignored the problem of ME.
Myalgic encephalomyelitis—I think I got that right—has proved to be the most frustrating topic that I have ever encountered. I am appalled at the apparent lack of interest in this most debilitating problem among people who should be in a position to investigate ME thoroughly. If they have discovered, as I have, that there is no existing solution to the problem, they should have been
instigating research into ME with a view to finding a solution. That should have been done years ago.
In this place, we make great play about finding ways to grow the economy. What finer way to grow the economy could there possibly be than to come up with a remedy for ME and to return up to 20,000 people to the productive workforce?
I am moved by the news that the scientific team at the University of Glasgow, headed by Dr John Gow, has at long last given a bit more than a glimmer of hope to people who suffer from ME. We in the Scottish Parliament must bring pressure to bear on the people in authority to ensure forthwith that they fully finance the research.
The cost of incapacity benefit payments and medication for about 20,000 sufferers of ME could, conceivably, exceed £50 million a year. Surely it makes better sense to recognise the true extent of the problem of ME and to fund fully Dr John Gow's project. I hope that the Deputy Minister for Health and Community Care will tell us that she can come up with a financial solution.
Mr Andrew Arbuckle (Mid Scotland and Fife) (LD): One aspect of the Scottish Parliament that has impressed me is its concentration on the diseases that affect our society—or, I should perhaps more correctly say, on the measures that are being taken to highlight those diseases and how they can be tackled. The more people who know about ME, autism, diabetes and the many other ailments that affect 21st century society, the more able we will be to deal with the issues that they throw up.
Only those who are affected by ME know how that pernicious disease can tear their lives apart and affect their families and relations. I recently visited a fundraising coffee morning for ME in Fife and saw how people were coping with life after ME. Without exception, they were optimistic, but they wanted to see progress on finding a cure. That is why I am pleased to support Alex Fergusson's motion. I join my colleagues in congratulating him not only on securing the debate, but on leading the charge for further progress in dealing with the disease.
With the groundbreaking research in Glasgow, a door appears to be opening through genetic science, and we should push at that door and be prepared to pay to go through the opening to help those who have ME—that is not to mention the boost that would be given to Scotland's reputation in medical research if we supported the project. We should not forget that aspect.
I have been sitting here almost feeling sorry for the minister as everyone roundabout has made an appeal for money—
Alex Fergusson: Almost.
Mr Arbuckle: Yes, I am coming to the "but". But my sympathy lies totally with those who suffer from ME, and I join those who are asking for the project to be funded.
Chris Ballance (South of Scotland) (Green): I will aim to help you, Presiding Officer, by being brief. My main reason for standing up here is to add my name to the list of those who share the sentiments that are expressed in Alex Fergusson's motion. I support Alex Fergusson in the work that he has done to bring the issue to the Parliament and in the cross-party group on ME. The attendance at the last meeting of the group that I attended was huge. There is great interest in the cause.
The importance of diagnosis—particularly early diagnosis, which is part of what the research is about—cannot be overstated. It is vital that we get a system of quick diagnosis. It is also vital that we investigate causes and support patients.
Phil Gallie (South of Scotland) (Con): I did not intend to take part in the debate, but one aspect strikes me. Members have talked about the fresh talent initiative. Here, we have a research team that is succeeding, yet Scotland seems, again, to be turning its back on it. Many heartfelt words have been said about ME and the sufferers. Does Chris Ballance agree that we should be proud of research of that kind and should build on it?
Chris Ballance: Absolutely, I agree entirely. I hope that the minister will take on board the success of the work and its potential for the future.
It is important for patients that they are able to choose how they manage and work with their disease. Dietary management, homoeopathy and reverse therapy have proved beneficial to people who I know and constituents who have written to me.
I conclude by stressing to the minister that we must, please, have a positive response to the debate.
The Deputy Minister for Health and Community Care (Rhona Brankin): I, too, congratulate Alex Fergusson on his success in obtaining the debate. I am sure that his tireless efforts, as convener of the cross-party group on ME, to improve services for people with chronic fatigue syndrome and ME are greatly appreciated
by those who are affected by this complex and distressing illness. The number of members who have attended tonight's debate, at the end of a long day, shows the high degree of interest that the issue attracts in the Parliament.
Contrary to what Alex Fergusson says, the Executive takes CFS/ME seriously. We have taken and continue to take steps to improve services. I will say more about that later. We are supporting research that we hope will lead to improved treatments in the future.
However, the motion refers to a particular research project. The lead researcher, Dr Gow, is aware of the role played by the chief scientist office in the Scottish Executive Health Department in encouraging and supporting research into health and health care needs in Scotland. As Alex Fergusson knows, the CSO responds primarily to requests for funding for research proposals that are initiated by the research community in Scotland and would welcome proposals for innovative CFS/ME studies of a sufficiently high standard. I cannot discuss any specific applications in detail—the CSO rightly keeps applications confidential until decisions on funding have been reached—but I can say that the chief scientist office would be prepared to discuss Dr Gow's research further with him. All applications for CSO funding are assessed on their quality and relevance to the health of the people of Scotland, using a well-established and highly regarded system of peer and committee review. It is important to note that there are lay members on all the CSO's committees. I will ask to be kept up to date on that issue.
The chief scientist office works in partnership with the Medical Research Council to support research on CFS/ME. The report of the independent working group on CFS/ME to the chief medical officer in England in January 2002 identified a need for a wide-ranging programme of research, and the MRC was asked to develop a strategy for advancing biomedical and health services research in this area. That approach was endorsed by the Scottish short-life working group on CFS/ME, which was set up by the chief medical officer in Scotland following publication of the English report.
In taking forward the strategy, the MRC encourages research proposals in all aspects of CFS/ME, including studies into the causes of the condition as well as evaluations of treatments. Proposals that are received under the initiative will benefit from additional weighting when they are assessed in competition for MRC funds, as CFS/ME has been designated as a current priority area for research. Although scientific quality has to be the main criterion, CFS/ME is a priority area for research.
As has been discussed today, funding for two large clinical trials has already been approved as part of the CFS/ME strategy and the CSO is contributing £250,000 over five years towards the cost of one of them. However, the MRC remains committed to funding scientific research into all aspects of CFS/ME and is currently considering a number of other applications on which funding decisions will be taken shortly.
I say to David Davidson that it is not the case that the Scottish Executive does not support genetics in health care. In fact, we have recently funded a major initiative on genetics and health care throughout Scotland to the tune of £4.4 million. That is a hugely exciting development. Some very exciting work on genetics has gone on in recent years at the Roslin Institute in my Midlothian constituency. It is clear that research into genetics is hugely important for Scotland.
Robin Harper spoke about advice on CFS/ME. The widening of the definition of additional support needs in the Education (Additional Support for Learning) (Scotland) Act 2004, which comes into force later this year, could have potential benefits for affected youngsters. Some youngsters with CFS/ME come to the notice of teachers because they sometimes have an erratic attendance at school. I am happy to ask Peter Peacock, the Minister for Education and Young People, whether some specific reference to CFS/ME can be made in relevant guidance. Although I am not sure whether it is possible to make reference to all conditions, it would be useful to provide information for teachers. Having been a teacher who has worked with youngsters with CFS/ME, I am aware of the kind of difficulties experienced by such youngsters and their families.
Alex Fergusson: Is the minister aware of an initiative that was launched jointly last year by the Tymes Trust for ME sufferers and a Japanese company, the name of which escapes me? They put together an information technology distance learning package specifically designed for people with conditions such as CFS/ME. If she is not aware of that, will she undertake to look into it to see whether it might have application in the delivery of education to sufferers in Scotland?
Rhona Brankin: I am not aware of that initiative. I have been out of the teaching profession for a number of years, but if the member gives me some information on the initiative, I will be happy to consider it and discuss it with Peter Peacock.
On the wider issues of services for people with CFS/ME, we set up a short-life working group on chronic fatigue syndrome and myalgic encephalomyelitis and we asked NHS boards to advise us of progress on the planning of services for people with CFS/ME. As has been discussed, the responses from health boards showed that,
although they all took the report seriously, services remained patchy. In a way, that is understandable, because the boards were not all starting from the same place. Some of them had already begun work on improving services, but others were only beginning to scope out the problem. It was clear that much more work was needed, and we have now agreed to arrange a national assessment of needs.
We recently received the report of the working group on the management of chronic conditions, which was set up as part of the national framework for service change. Of course, that report relates to all long-term illnesses, but it has an important message on chronic conditions for all of us. We will consider its recommendations for improvements.
We have recently given grant funding to the voluntary organisation Action for ME to develop information packs for general practitioners. That work has already been done in England, and it is hugely important.
I am happy to reaffirm the commitments that I made to the Health Committee on 26 April. We will arrange for an assessment of needs as soon as possible and we will fund NHS Quality Improvement Scotland to produce a best-practice statement on ME as part of its current work programme. Finally, we will ensure that the good-practice clinical guidelines on CFS and ME that are being developed by the National Institute for Clinical Excellence are made available to the NHS in Scotland at the earliest opportunity.
Alex Fergusson: It would be churlish of me, as convener of the cross-party group on ME, not to acknowledge and be grateful for the steps that have been taken, albeit that they have been taken over a longer period of time than one would have wished. I acknowledge those steps entirely, but does the minister accept that if Dr Gow's research project comes to fruition and delivers the promise that it might deliver, all the steps that she outlined will be completely unnecessary?
Rhona Brankin: In an ideal world, we would not have to take any of those steps.
I finish by congratulating Alex Fergusson again on his success in securing what has been a stimulating, difficult and challenging debate.
The Deputy Presiding Officer: That concludes today's business. I feel that I should apologise to the members of the public who have just come into the gallery.
Meeting closed at 18:17.