ME As A Notifiable Illness in Schools
Our Letter to CMO - 26th October 2006
Dear Sir Liam,
Please find attached a letter from Invest in ME which we would ask that you read.
We are requesting your support for a campaign we are beginning to address just one of the many issues surrounding the treatment of Myalgic encephalomyelitis in the UK.
We have sent this letter to you also via post and we have included other interested parties -
Dr. Ian Gibson - who is leading the parliamentary inquiry into ME
The Secretary of State for Health
Countess of Mar - who has had a long-standing interest in the debate on ME
We hope you will consider our request (below), -
Chief Medical Officer
The Department of Health
Room 114 Richmond House
79 Whitehall
London SW1A 2NF
CC: Dr Ian Gibson MP Secretary of State for Health Countess Mar
Date: 12/07/2006
Dear Sir Liam,
Myalgic Encephalomyelitis
Invest in ME is a registered charity campaigning for biomedical research into Myalgic Encephalomyelitis (ME).
ME is now 5 times more prevalent in the UK than is HIV/AIDS. It is even more prevalent than lung cancer although it receives little or no government funding for biomedical research – in contrast to the aforementioned illnesses.
As you know ME is a neurological illness which affects many children and is the leading cause of long-term absence from school in the UK. It is widely understood that ME is of viral origin. Given this, we find it difficult to understand why ME is not a notifiable illness in schools.
For an illness which is estimated to cost the UK economy between £3 and £6 billion pounds a year the notification of this illness at schools seems an obvious course of action to take.
With no government funding being directed at biomedical research we need as much data as possible in order to apply necessary diagnostics to this illness. By making ME a notifiable illness it would be possible to collate more exact figures for occurrence and geography of the illness. It would have a further advantage in ensuring that children’s lives are not irreversibly disadvantaged due to lack of awareness. If the demographics were better understood Health and Education Authorities could better target their limited resources for the benefit of these sick children.
We seek your support in making Myalgic Encephalomyelitis a notifiable illness at all schools in the UK,
Yours Sincerely,
Invest in ME
The letter has also been sent to Dr. Ian Gibson MP, the Secretary of State for Health and Countess Mar.
Reply from CMO to Our Original Letter
The Countess Mar has given her full support and replied shortly after receiving the letter.
We have had a reply from Sir Liam on 27th July 2006. The response we received was similar to the predictable response one receives when making enquiries to the Department of Health on the subject of ME.
Thank you for your letter of 12 July 2006, in which you ask that chronic fatigue syndrome Myalgic encephalomyelitis (CFS/ME) is designated a notifiable disease in schools.
There is currently no statutory requirement for schools to inform their Local Authority of illness in children. Under the Public Health (Control of Diseases) Act 1984, the statutory responsibility for notifying such diseases lies with the attending doctor.
At present, only certain conditions are notifiable under the Act and the Public Health (Infectious Diseases) Regulations 1988. These are diseases that are potentially life threatening, spread rapidly and cannot be easily treated or cured. Their notification is necessary to identify and prevent, or minimise, the spread of infectious disease and allow for statistical monitoring and surveillance for trends in certain illnesses.
As you are aware, there has been considerable debate on the causes of CFS/ME. Whilst a number of theories have centred on viral infection as a possible cause, others, however, have suggested different causes. No one has provided conclusive evidence to support any view and it seems possible that the syndrome represents a spectrum of illnesses, some of which will have an unidentified physical cause. As no infectious agent has yet been conclusively identified as the cause of CFS/ME, it would be for reasons I hope you will understand, inappropriate to designate it a notifiable disease for the purposes of the Act.
As you know, I have taken a personal interest in CFS/ME during my time as Chief Medical Officer so I do appreciate your concern about a lack of bio-medical research in this area. The independent scientific Research Advisory Group, the Medical Research Council set up to advise on their CFS/ME research strategy, recommended that in the short term the research community should be encouraged to develop high-quality research proposals addressing case-definition, understanding of the symptoms of CFS/ME, and new approaches to disease management. The Group believed that significant advances that could impact on the health and quality of life of those with CFS/ME could be made in this way. We do share your view that more research is needed into the causes of CFS/ME in the hope that this will, in the long term, lead to better treatments. However, studies investigating possible causes, whilst having merit, may not necessarily have immediate impact on increasing our understanding, or reducing the suffering of patients. Other complex illnesses such as diabetes and multiple sclerosis have established treatments and are successfully managed and researched without complete knowledge of their causes.
I do hope that it is helpful in clarifying the Department's position.
Yours sincerely
SIR LIAM DONALDSON CHIEF MEDICAL OFFICER
Our Follow-up Letter
As we are not satisfied to receive yet another template letters then we feel the pattern needs to change.
We have written back to Sir Liam and requested a meeting with him and we are awaiting a reply.
Chief Medical Officer The Department of Health
Room 114 Richmond House
79 Whitehall
London SW1A 2NF
Date: 24/08/2006
CC: Dr Ian Gibson MP
Secretary of State for Health
Countess MarDear Sir Liam,
Myalgic Encephalomyelitis
Thank you for your reply to our letter of 26 July 2006.
Our first reaction to your reply was disappointment. As families with people with ME we are used to receiving standard templates as replies to our questions from the Secretary of State for Health or her ministerial assistants which are routinely dispatched to parents and carers of people with ME, as well as to sufferers of ME. However, from the Chief Medical Officer we expect something different.
There really is absolutely no point in wasting time trotting out the same old, tired phrases in relation to ME. We have long since got past the stage where there is any doubt about the organic nature of Myalgic Encephalomyelitis. It is now surely beyond doubt, even by DoH standards, that ME is a biological illness and the only way forward is to provide funding for biomedical research.
You mention that the statutory responsibility for informing local authorities of illness lies with the attending doctor. You write that only certain conditions are notifiable under the Public Health Act and that these are diseases that are potentially life-threatening.
We wonder if you have heard of the recent case of Sophia Mirza who died of ME – as noted by the coroner. Hers is not the first case of death from ME in the UK – Richard Senior’s wife’s death was also recorded as being caused by ME (although in this country the term CFS is used due to other major issues regarding the perception and treatment of ME). You can read about Sophia Mirza on our web page at –
">http://www.investinme.org/Article-050%20Sophia%20Wilson%2001-RIP.htm
ME kills. It isn’t the first case – yet how much statistical data have you collected on this subject?
Can you explain why an illness which is five times more prevalent than HIV/AIDS in the UK, and which kills, is not notifiable under the Public Health Act and according to your own interpretation of that act?
Is the CMO powerless to feed in new information that results in action under the Public Health Act when he knows the evidence warrants it?
You also mention that these illnesses require notification to prevent or minimise the spread of infection. Are you aware of studies which possibly identify cases of ME as epidemics?
Have you not seen the information about ME that has been compiled in the work of Dr Betty Dowsett and Jane Colby of Tymes Trust? These studies along with those of Dr Nigel Speight have clearly shown that ME-CFS is a major illness responsible for most school absenteeism. Apart from being “potentially life threatening, it is spread rapidly and cannot be easily treated or cured”. We are surprised that the CMO does not know this. Is it unreasonable to expect that the CMO should be aware of the literature and the presentations made at the Invest in ME Conference in May 2006 and other conferences?[The CMO was invited to the ME Conference]
With an estimated 250,000 people suffering from ME in the UK alone we do not seek platitudes. Of course there has been considerable debate - much of it characterised by confusion, misrepresentation and deception. The debate in the House of Lords lead by the Countess of Mar, January 22nd, 2004 forced a response from Lord Warner the Health Minister, Feb 11th 2004, that the Department of Health accepted ME was a neurological illness under WHO classification, ICD-10 G.93.3 and that this information would be communicated to the medical profession and corrections made to other official statements that were not in agreement with this fact.
The reply was full of equivocation and misinformation and, although some official statements have changed, it is clear that the official stance has not, with the perpetuation of psychiatric models of ME-CFS continuing at official treatment centres that have been massively funded and supported by the Government but rejected by patients and support groups.
It is instructive that the latest version of ICD-10 6th version has removed CFS from chapter G.93.3 where only ME and PVFS are included.
Contrary to what you say there is now incontrovertible evidence of the biological nature of ME. We are not talking about CFS – we are talking about Myalgic Encephalomyelitis. The fact that the psychiatric lobby, supported by insurance and pharmaceutical companies, continue to group ME in with CFS should be seen as nothing but a shameful episode in UK healthcare.
Your statement that “No one has provided conclusive evidence to support any view [of the illness]” is disingenuous in the extreme if not Machiavellian. You must surely know of the work of Dr. John Richardson, Dr. Byron Hyde and the Nightingale Foundation, or the work of Chia, Kerr, Speight, Archard and Muir; all pointing to enteroviral illness? You cannot be ignorant of the extensive studies that have shown an underlying mechanism that describes an aberrant immunological response that leads to ME as a chronic multi-system, multi-organ illness – shown by Der Meirleir, Suhaldolnik and others? This model also leads to an understanding of why other viruses (such as HHV-6, adeno- and parvo viruses, and intracellular organisms, borellia, Chlamydia, rickettsiae) evoke a similar spectrum of symptoms.
Yet you seemingly appear to accept the psychiatric model involving somatisation and the biopsychosocial theory as valid and seem unaware of the devastating criticisms of these views by Per Dalen, and McLaren. This is to fail to get informed through the literature and act accordingly. Although it is always possible to demand more research and more evidence there is now an overwhelming weight of evidence in support of the organic nature of ME
There surely can be no doubt now that ME is of organic nature. The theories which have been given the lion’s share of research funding in the UK are centred wholly around psychiatric paradigms for treatment.
If one is only looking in one direction then one will find just the one result.
We presume that your “personal interest” in ME refers to the Working Group Report – a report which many see as shrouded in controversy and deception and which, in the end, satisfied no one - neither the ME support groups nor the psychiatrists were able to sign the final report and this did not include key appendices that expressed views that addressed ME as an organic illness and offered treatment options.
As for the MRC and an Independent Scientific Research Advisory Group - the MRC has systematically refused to fund research from internationally recognised research groups that are carrying out first class studies in the field of ME. Yet millions of pounds have been allocated to support poorly designed and badly executed psychiatric studies and a whole network of clinics established that have been rejected by ME patients despite coercion and other unsavoury practices.
How can you allow this to go unchallenged? How can people who are charged with responsibility for the health of the public ignore the evidence (practically all from privately funded research) which clearly points to the biological nature of ME?
It is to the shame of the MRC and Government that patient groups and organisations have themselves provided funding of seminal studies in the field of ME. These have shown the inadequacies of the CDC definition used in most research studies that mean their conclusions are utterly compromised, shedding confusion rather than clarifying the situation. Is this is all we can expect from a Government that “funds to support policy”. All research is sullied and compromised as a result and patients suffer.
And patients die.
It is unacceptable to say that “Other complex illnesses such as diabetes and multiple sclerosis have established treatments and are successfully managed and researched without complete knowledge of their causes.” As you are surely aware both these illnesses were regarded as psychiatric until insulin and MRI were discovered. Although there is much to learn about the details of these illnesses our present understanding and treatments have emerged from careful research studies that have exposed the inadequacies of the psychiatric models.
Are you, as Chief Medical Officer, advocating a similar perpetuation of ignorance with regard to cancer research, HIV, or rheumatoid arthritis?
Nowadays neither MS nor diabetes has to be proven to the public or DoH that it is of organic nature. Yet still your department allows the false impression that ME is possibly a psychiatric disorder. In this you fail sick people and their families – many of them children.
Surely what is required is proper biomedical research into ME and the funding that goes with it.
If you have really taken a personal interest in ME then why is it we hear nothing from you when hundreds of thousands of lives in the UK are being destroyed?
Why is money, which should be going to proper biomedical research, in fact directed to a psychiatric lobby who use out of date and flawed diagnostic criteria to run trials which have no scientific basis for treating ME and will not benefit ME patients?
Why, when modern diagnostic criteria (see the Canadian Consensus Guidelines) are available does the DoH remain silent on their usage (despite some NHS doctors already breaking ranks and endorsing them)?
Why do you continue to remain silent whilst the MRC is allowed to squander much needed funding on PACE and FINE trials which will provide nothing for another generation of ME patients and their families?
Why, Sir Liam, are you silent regarding an illness which is more prevalent than HIV/AIDS or lung cancer?
There is no doubt about the challenge of ME but this, all the more, needs top class research workers with top class facilities to engage with it and to be supported by substantial funding. Such institutions and research staff do exist and should be funded.
Your position, if we base it on your reply to us, seems to be one of obscurantism and indifference which refuses to engage with a major complex illness that affects about 1 in 250 of the population. The seriousness of this situation demands immediate and positive action that involves both research studies and supporting clinical and social services.
So, back to our original request.
If you put aside for now the statistics and think of one fact –
People are dying from ME
Does it really need litigation before we can move forward on an illness which is losing generations of people, many of them children?
We disagree entirely with the notion of which you write that it would be inappropriate to designate ME as a notifiable illness.
By making ME a notifiable illness (maybe via attending doctors, as you suggest) it would be possible to collate more exact figures for occurrence and geography of the illness. It would have a further advantage in ensuring that children’s lives are not irreversibly disadvantaged due to lack of awareness. If the demographics were better understood the Health and Education Authorities could better target their limited resources for the benefit of these sick children.
We ask you to reconsider your current position on ME.
We would also ask that you receive a delegation from Invest in ME, and other support groups, which we can arrange, and allow us to discuss this with you face-to-face at your earliest convenience.
Yours Sincerely,
Invest in ME
Reply from CMO's Office - 26th September 2006
One month later we received this response from the CMO's diary secretary - <
Thank you for your recent e-mail to Sir Liam regarding setting up a meeting.
Unfortunately, due to Sir Liam's busy schedule at the moment, it is not going to be possible to arrange a meeting. Sir Liam has asked for the correspondence regarding this case and your request for a meeting to be passed to Professor Antony Sheehan, Director General of Health and Care Partnerships at the Department of Health, to take forward.
Should you wish to contact Professor Sheehan's office, the details are:
antony.sheehan@dh.gsi.gov.uk
Tel: 0113 25 45240Please let me know if I can be of further assistance.
With best wishes.
Wendy
Diary Secretary to Sir Liam Donaldson
Chief Medical Officer
Department of Health
Richmond House
79 Whitehall
London SW1A 2NS
IiME Reply to CMO - 26th October
Obviously, it is an unsatisfactory state of affairs that any ME patient group or charity is not allowed to see the CMO.
So we have again written back to Sir Liam and are currentlawaiting his reply.
Chief Medical Officer
The Department of Health
Room 114 Richmond House
79 Whitehall
London SW1A 2NF
Date: 26/10/2006
Dear Sir Liam,
Myalgic Encephalomyelitis
To Chief Medical Officer
The Department of HealthDear Sir Liam,
Thank you for the reply of 22nd September to our letter regarding the making of Myalgic Encephalomyelitis a notifiable illness in schools.
Your diary secretary states that there is no possibility of arranging a meeting with you due to your busy schedule.
We have invited you to speak at our conference next year, where you would have the opportunity of meeting and speaking with people with ME as well as many scientists, researchers and healthcare staff who are involved with ME. This offer has been rejected by you. Now you state that you have no time to meet us.
We find this an unacceptable response. This is not out of belligerence but purely because we understand how devastating this illness is and how inappropriate and ineffective the present strategy for diagnosis, treatment and research is.
Surely you must have two hours free at some point in the next year where you can meet a representation of ME support groups, organised entirely by Invest in ME, and listen to our concerns. We will meet you on Christmas Day if necessary. You only have to find the time.
We find it totally unconscionable that you should reject this request. We find it unacceptable to be passed on to another department to deal with this request. As Chief Medical Officer we feel that you have a responsibility to hear directly from the ground what this illness is doing and why funding for biomedical research is urgently required and why this illness needs to be a notifiable illness in schools.
Your timetable may be full. Unfortunately, many tens of thousands of people in the UK have a timetable which is also full - consisting entirely of being bed bound or housebound, and many schoolchildren have no prospect of an end to this suffering.
We once again urge you to consider our request that you allow us to meet with you directly so that we may discuss this illness.
Yours Sincerely,
Invest in ME
CMO Agrees to See Invest in ME - January 2007
After several email exchanges IiME are planning on visiting the CMO to discuss this campaign to make ME a notifiable illness in schools.
Meeting between Invest In M.E. and the Deputy Chief Medical Officer.
Following a one hour meeting in January between the DCMO, Invest in M.E. and Professor Malcolm Hooper, Invest in ME wrote the following letter to Dr Kirkup:
“Dear Dr Kirkup,
Thank you for sparing the time to talk with the representatives of Invest In ME on 30th January 2007 to discuss the plight of people suffering this dreadful neurological illness and the lack of progress since the CMO’s report in 2002.
We hope that you found the meeting stimulating and that you are able to find the time to read the material that we left with you. Also, we hope that you will be able to substantiate the points that we made regarding the lack of progress in defining Diagnostic Criteria and establishing any programme of biomedical research in to Myalgic Encephalomyelitis by the Medical Research Council.
The National Institute for Health and Clinical Excellence (NICE) have spent over 12 months in generating Draft Guidelines for the treatment of ME patients, yet these guidelines have been universally criticised by all the charities involved in the drafting process, where all but the psychological-based procedures have been ignored.
You acknowledged that you had read the report by the Group on Scientific Research into ME (GSRME) published by Dr Ian Gibson, MP. For your information, a public meeting is scheduled to take place in Room W1 off Westminster Hall on Tuesday 6th Feb 2007, 2.30-5pm. If you were able to attend, then I am sure that Dr Gibson and his team of Parliamentarians would be more than welcoming. IiME fully supports Dr Gibson in his efforts to address the lack of involvement in ME by the government bodies.
We hope that you understand when IiME states that this is a “National Scandal”, that this is based on the evidence openly available from the MRC and the lack of progress in developing any biomedical procedures within the Department of Health.”
At the meeting Dr Kirkup agreed to consider looking into distributing and recommending the use of the Canadian Diagnostic Criteria to all GPs in England and Wales. Rather worryingly though he also said that there was no point sending information to GPs as it was usually thrown straight in the bin!
Unfortunately Dr Kirkup was not present at the GSRME meeting in February.
Last week Professor Hooper received a follow up letter from Dr Kirkup, the main body of which was:
“On reflection, it seems to me that the significant division of opinion that you identified between the biomedical and the psychological aspects of ME is central to the frustration that exists concerning research and treatment of this condition. In many clinical fields, for example cancer services, these approaches are regarded as complementary aspects of a holistic model – without, clearly, this in any way being seen as a commentary on the underlying nature of the condition. Of course, I am aware that the frustration exists on both sides of the divide that you identified. However, I can’t help but feel that more progress would be likely if all parties did not apparently see it as such a pronounced and consequential a dichotomy.”
So, we obviously have a long way to go before we make any progress with the CMO’s office as this response offers no solutions or promises other than the suggestion that we stop seeing the divide between the biomedical and psychiatric lobbies.
Dr Kirkup has said that he will try to come to the IiME conference if other commitments permit.
We feel it is the very least to expect from the CMO's office.
Postscript: 12 May 2007
Neither the CMO nor the Deputy CMO came to the Invest in ME International ME/CFS Conference in London.
The CMO was invited to write in our Journal of IiME.
No response to our request was received.
