from Invest in ME

Chief Medical Officer
The Department of Health
Richmond House
79 Whitehall
London SW1A 2NS

For 12th May 2009

Dear Sir Liam,

The 12th day of May is recognised (celebrated would be an inappropriate term) as ME Awareness Day in many countries. It is the focal point of what has become ME Awareness Month – a month dedicated to raising awareness of myalgic encephalomyelitis (ME or ME/CFS).

As you know Invest in ME is a UK charity that was created by families of children with ME or persons who suffer from ME themselves and who were appalled and frustrated at the lack of action from government, departments of health, healthcare organisations, charities and individuals – all purporting to service or represent people with ME yet seemingly doing little or nothing.

Since it was formed Invest in ME has organized and hosted an annual International ME/CFS conference in Westminster, London, with the aim of educating healthcare staff, the media, politicians, ME support groups and people with ME of the biomedical research which is taking place.
On 28th/29th May 2009 we are holding our fourth conference.

Despite inviting you to speak at our conferences or attend as our guest you have declined on every occasion. Last year you did arrange for a representative to attend - yet he left after the first break thus missing important research evidence presented by the foremost experts in the world – research and data which would be mandatory for a Chief Medical Officer to appraise himself of in order to be aware of the current overwhelming evidence of the organic nature of this illness and the direction which now must be taken to provide treatments.

A petition was recently raised by people with ME asking you to attend this year’s IiME conference. In a short time it raised 2500 signatures – an impressive feat considering that many of those signing it are having to endure daily the deblitating symptoms of ME.

Invest in ME have reserved a seat for you at this year’s conference in anticipation of your response.

Since Invest in ME was created we have tried to engage with you and we have tried to persuade you to let us work with you to address the complete lack of any substantive action from those charged with the responsibility for healthcare regarding ME in the UK.

Of your 2002 CMO Report’s recommendations not one can be said to have been implemented.

Invest in ME previously asked you to make ME a notifiable illness within schools due to it being the greatest cause of long-term absence through sickness from school for children and teachers. You refused this and, although allowing us to speak with your Deputy CMO who promised to look into the situation regarding ME, to date nothing has happened.

In May 2008, in order to move things on and attempt to create progress, Invest in ME arranged an invitation for you to visit the Whittemore-Peterson Institute for Neuro Immune Diseases (WPI) in Nevada, USA. This is a centre which performs biomedical research into ME. It is considered by many in the UK and abroad as the model for any research and treatment facility to find treatments and a cure for ME. It is the foremost centre of excellence for researching ME.

You not only declined this offer to visit the WPI in the next 6-8 months (a period which we and the WPI considered to be a sensible timescale) but you also declined to attend the 2010 official opening of the WPI. The reason for declining the early invitation was that your “diary is so heavily committed for most of this year it has not been possible to accommodate this request”.
Your reason for declining the later invitation was that “this event is so far ahead, it is difficult to make any commitments this far in advance as diaries may change”.

We have attempted to raise the main issues with you over these years in a proactive manner and we again ask that you reflect on them and how a lack of action is affecting millions of lives - of young people, of families, of chronically ill people. Yet it has been obvious that there is little intention by the establishment of doing anything to help people with ME. We have a great deal of doubt  as to whether the MRC panel looking at ME research will actually achieve what is necessary especially as it includes some who wish to reclassify ME as a behavioural illness. We fear the MRC will cause protracted delays in achieving anything of worth - in the eighteen months since it was announced it has achieved very little.

A parallel should be drawn with the current situation regarding swine-flu.

At last year’s conference your representative would have heard (if he had stayed long enough) of the effective treatment of a subset of ME patients by Dr Martin Lerner of Michigan, USA, and by Dr John Chia of Torrence, California, using antivirals.

In the UK Invest in ME has had many patients contacting us stating that their doctors are willing to prescribe antivirals but are unsure of how to organise this or the local hospital Drug and Therapeutic committees are obstructive. Other patients report that their PCTs are unwilling to allow antivirals to be used due to the cost.
The only option for some is to fund their own visits to clinics abroad to receive appropriate attention. That is, of course, only an option for those who are able to attempt travel and who have enough funds to do so (most, of course, will be unable to contemplate this action due to their having been out of work due to the illness and forced into haggling with the DWP for any benefits to enable them to barely eke out a life of sorts).

Thanks in part to a media campaign the provision of antiviral drugs to combat an as-yet, non-existent pandemic of flu is considered a normal, responsible action to take.

What is the difference between an illness which is yet to cause substantial harm to the population and an illness which has been causing major effect on millions of citizens of this country for decades? Surely if access to antiviral drugs is allowed for flu then it ought to be allowed for a major chronic illness.

We ask that you to help initiate trials of antivirals in this country for severely affected people with ME so that the results established by the researchers and clinicians at our conferences can be replicated here and allow people to begin to reclaim their lives back from this terrible illness.

We ask you again, on this day of awareness, to make an exception, cancel your plans and personally attend this major international conference, on 29th May, taking place a few hundred metres from your office. As you have stated yourself “diaries can change” and we feel that sending a representative to our conference does not work.

On your web site under The Role of the Chief Medical Officer [] you state -
“I represent the Government, for which I work, the medical profession, which I try to listen to, and the public. My moral principle is that if ever there is a conflict it is the public who wins."

On this day of awareness Invest in ME invite you to make a complete change in direction regarding ME and take on the role of champion of people with ME.

We invite you to make the treatment and eventual cure of ME your personal responsibility, something which no other government department or medical research organisation or vested interest can hijack or use for their own purposes.

On 29th May in Westminster, London, there is a seat reserved for you to listen to the latest, groundbreaking research being performed by the best researchers in the world. The conference discusses severe ME.

On this day of awareness Invest in ME invite you to make a difference, draw a line in the sand and advance the cause of progress for people with ME.

Let the public win,

Yours Sincerely,

The Chairman and Trustees of Invest in ME

Invest in ME
Registered UK Charity Nr. 1114035

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Last Updated: 12/05/2009