Dear Mr. Brown,
In March of this year an e-petition was raised (http://petitions.number10.gov.uk/AttendIiME2009/#detail)
asking the “Minister of Health, Medical Research Council delegates and the Chief
Medical Officer to attend the INVEST in ME Conference 29th May 2009 London”. The
petition was raised in March 2009 to allow enough time for the question to be
raised to the relevant parties before the conference date of 29th May
On 1st July 2009 (over three months after the
petition was raised and two months after the petition was closed) your office
Invest in ME are profoundly disappointed by the continuing
indifference to ME which the perfunctory response from your office has shown –
and yet we hoped that perhaps we could expect more from our Prime Minister.
The petition was a genuine attempt to engage your
government and the organizations/officials which you fund with public money. It
endeavour to provoke some understanding of the issues involved in the
current policies toward ME research. By attending the foremost biomedical
research conference on ME in Europe your officials would be better equipped to
understand the possibilities and the potential available in treating this
The reply from your office is insulting in its complete
lack of engagement of the proposal and of the underlying issues associated with
It gives no joy for us to pronounce that your government is
failing a large section of the UK population – people who are chronically ill
and who are hoping for leadership and vision from the person who has the power
to change things for the better.
Your office states that
“Ministers and the Chief Medical
Officer receive a large number of invitations from stakeholders, pressure groups
and individuals to attend meetings and events” and “it is not possible to attend
the vast majority of these events”.
This was Invest in ME’s fourth annual international
conference held in Westminster. We have been asking for the government and the
CMO to attend in each of the last four years. The Department of Health has not
sent one representative in all of that time.
Your office states that “The Medical Research Council is an
organisation and it would therefore not be appropriate for the Prime Minister
to instruct it.”
The MRC is a publicly-funded
organisation “dedicated to
improving human health”. It should be accountable to the public. The MRC
receives annual ‘grant-in-aid’ funding from Parliament through the Department
for Innovation, Universities and Skills and its council members are appointed by
the Secretary of State for Science and Innovation.
It is entirely appropriate for the Prime Minister to
intervene when there is deliberate bias being operated by this “independent”
body which is, nevertheless, supposedly accountable to a government department.
The MRC has provided a total investment of £3,180,900 in
funding research projects concerning ME – this money going to psychiatric
therapies such as the PACE and FINE trials. Both of these trials are considered
meaningless by ME patients and are ridiculed for their lack of scientific
rigour in identifying true
ME patients. Even those who have participated have
criticised these trials.
Your government officially recognizes ME as a neurological illness, as does the
World Health Organization, yet you allow this “independent” body to avoid
funding any biomedical research into ME and instead it supports vested interests
who instead use this funding to pursue their own agenda of research into their
own chosen fields of psychiatry. The latest ploy by the MRC
of creating a
panel intent on tying both biomedical and psychosocial factions together will be
a liability for future research into ME and we have no faith or belief in their
seriousness in looking for appropriate treatments for this illness.
It is a scandal that the MRC causes the prolongation of
such an appalling waste of life and scarce resources; that it seems to lack any
accountability for its actions (or lack of action); that it does not serve the
patient community; that it is systemically flawed with a refereeing system for
research proposals that is neither transparent nor fair; and that it ignores
requests to attend a conference providing the latest information on biomedical
research which is being held on its doorstep and which could lead to improvement
in human health.
We cannot comprehend why you and your ministers feel it
“inappropriate” to intervene to understand why the MRC policy toward research
into ME is a failure.
The crass referral to the UK Clinical Research Network of
the National Institute for Health web page in your reply to the petition
indicates that there is nobody in your office who really understands anything
We found just two references on that site regarding research for ME (the PACE
Trial and the FINE Trial) - using the term chronic fatigue or chronic fatigue
syndrome rather than myalgic encephalomyelitis.
The one-size fits all approach of your government, of NICE
and of the MRC in supporting only Cognitive
Behaviour Therapy (CBT) and
Graded Exercise Therapy (GET) for people with ME – therapies rejected by the ME
community – is testament to the lack of ideas and the lack of commitment by your
We know of no patient groups who welcome studies into CBT and GET apart from two
organisations who accept money from your government to support your policies.
NICE was taken to judicial review by ME patients due to
their unsatisfactory guidelines for ME. Yet your government does nothing to
recognize the dissatisfaction with your and their policies.
Your reply states that –
findings about a genetic basis of CFS/ME that are providing extremely valuable
insights into the causes of, and possible therapies for, the condition these are
early research findings that at present have no direct relevance to any
predictive or diagnostic gene test for these conditions.
However, the Department of Health
continues to keep such developments under review and there are well-established
mechanisms to evaluate new genetic findings and ensure their proper
implementation across the NHS.”
This is a pitiful response which is condemnable by its lack
of up-to-date information and patent spin. It is symptomatic of a government
which doesn’t understand, doesn’t bother to verify, and cannot be bothered to do
MRC refused to fund world-class research from Dr Jonathan Kerr which is clearly
seen by others abroad to be state of the art. Why is public funding for this
valuable gene research being constantly refused?
It has been funded entirely by
small charities and many individuals donate from their benefits because they are
so desperate for proper treatments being developed instead of being offered only
CBT and/or GET.
If any of your government ministers or officials had
bothered to find the time to walk a few hundred
metres to the conference
venue on 29th May this year then they would have been able to judge
for themselves how fatuous the response from your office is.
There is substantial evidence now of effective treatments
for some sub-groups of ME.
one example yet no funding has been made available for performing clinical
PCTs do not allow patients
to be given these drugs. Yet how hypocritical the situation is when your Chief
Medical Officer allows antivirals to be made freely available to any person
suspected of contracting swine flu despite fewer people suffering from this flu
variant than ME.
ME is the largest cause of long term absence from school
through sickness for pupils and staff yet your CMO refuses to make ME a
notifiable illness in
Yet one case of swine flu frequently closes a whole school
The DoH is not reviewing the treatments which are available
The CMO is not recommending research trials be carried out
on promising treatments which privately funded research has identified.
Even the most basic and obvious action which should be
required – an epidemiological study of ME in the UK – has not been performed by
The use of a current and sound set of clinical guidelines
for ME has not yet been standardized. The Canadian Guidelines document – held by
most ME advocates as the best of the guidelines for diagnosis – is not advocated
yet by the NHS or DoH despite it now becoming the de facto standard across the
Quite simply your government’s policy towards ME is
non-existent and its attitude toward people with ME and their families is
nothing short of scandalous.
Invest in ME has, in its four years of existence, attempted
to educate healthcare staff, the media and the public about the real situation
with ME, and show the biomedical research which is being carried out and which
holds the promise of effective treatments and cures. Consistently your
government has refused to acknowledge any of this.
And yet how easy it would be to change this with a clearly
defined strategy of biomedical research which could be funded by public and
private funding, if there was a will to do so.
Invest in ME began distribution of the book “Lost Voices
from a Hidden Illness” earlier this year. Once delivery began we took the
liberty of sending a complimentary copy to your wife, Sarah, who is global
patron of the White Ribbon Alliance for Safe Motherhood and co-chair of the
High-Level Leadership Group on Maternal Mortality convened by the Global
ME is more prevalent in women, affecting up to four times
as many women as men according to some studies. Many women with ME will never be
mothers as they have fallen ill as teenagers and spend decades being bedbound.
Many mothers have to watch their children’s suffering for years on end without
any help from the health services.
Lost Voices is probably the best book ever about ME which
shows the true picture of the effect of ME on sufferers and families.
We have received neither acknowledgment of receipt of the
book nor any indication that the book has been read.
If only one of your ministers would read Lost Voices then
there would be no need for any further debate. The very basic compassionate
instinct of most human beings would demand immediate action.
Your government fails its citizens, refuses to take any
action, ignores the effort of two and a half thousand people who petition you to
help them, looks the other way to the plight of the hundreds thousands of
citizens affected by this terrible neurological illness and concentrates on spin
and ignorance as the cornerstone of your policy toward ME.
A year ago you gave a speech in which you stated that -
“The NHS of the future will do
more than just provide the best technologies to cure: it will also - as our
population ages and long-term conditions become more prevalent - be an NHS that
emphasises care too.”
“It will not be the NHS of the
passive patient - the NHS of the future will be one of patient power, patients
engaged and taking greater control over their own health and their healthcare
“With cutting-edge techniques from
genetics to stem cell therapy - and life-saving drugs to prevent, alleviate or
cure conditions ……”
“So if we are to prevent as much
suffering and save as many lives as possible, it is clear that
utilising these new
technologies must continue to be at the heart of any progressive health policy.”
In the last year Invest in ME are aware of people dying
from ME, as has happened over the last decades.
We are aware of a family where the mother suffered from ME
and where the pain was so great that she was taken to Switzerland to perform an
We know of a recent case of one mother who has been charged
with assisting her daughter in taking her life after she had suffered from
severe ME for almost two decades – the pain being unbearable to endure.
We know of patients in the heart of London who suffer for
years from ME and receive absolutely no medical treatment – lost voices with no
recourse to help from a government and a healthcare service which provide
We know only too well of children who lose their teenage
years and become isolated and reduced to utter dependency on parents who
themselves struggle to find any help from the NHS, from the educational
establishment or from ministers.
It is easier for people in the UK with ME to get help to
die than it is for them to get help to live – thanks to your government’s
Your government’s health ministers have consistently
avoided taking any action, continued to answer the petitions and letters from
people with ME and their families by using outdated information, template
paragraphs containing multiple inaccuracies and an indifference to the plight of
chronically ill people.
The cursory response to a valid plea from people with ME
and their families shames your government and gives the lie to the sentiment
that you really care for what happens to citizens in this country.
In this letter to you we have only concentrated on
healthcare provision. We have not even begun to mention the effect of the
policies of your government which force chronically ill people with ME to be
denied benefits or to spend all their energy on battling to regain benefits
taken away by your government departments.
So what are ME patients and their families to do now having
received this appalling response from your office?
Despite no epidemiological study being recommended by your
government or insisted upon by the health service we can suspect, from studies
performed by responsible researchers, that there are between 120,000 and 240,000
people affected by ME in the UK.
Many of these can be expected to have some family and
these, in turn, can be expected to have immediate friends and relatives.
It would be no exaggeration to assume, then, that upwards
of two million people will be directly affected by the lack of healthcare
provision for people with ME – either as direct sufferers of the illness, direct
relations or friends of those affected. This figure could be a very
Although Invest in ME does not hold party political views
it is an obvious corollary that two million citizens, or more, make up a
substantial number of voters who cannot be ignored and who may decide with
their votes what they think of the Labour governments’ policies toward ME over
the last decade.
It may be that ME organizations can mobilize enough of a
protest to make a difference in the forthcoming election and that would, indeed,
provide an irony where, to use your own words, the “future will be one of
Before we contemplate that action we would ask that you
yourself make an hour or two of your time available and devote it to the cause
of people with ME.
We ask you to accept a party of individuals organized by
Invest in ME to visit you and explain clearly what is required and how your
government’s lack of action is destroying lives – or let us take you to a
chronically ill patient with ME so you yourself can see the utterly appalling
situation which exists for people in this country who are denied treatments
(which exist) due to the ignorance of the healthcare service, government
ministers and establishment organizations responsible for deciding on which
research is given funding.
Letters, petitions, emails and the deaths of people with ME
have not moved your government to act.
Will you now see the desperate need for action, meet with
us and let us try one last time to make you understand what is really happening?
Show us that, as Prime Minister, you and your government
have not abandoned basic ideals of justice and humanity being directed towards
its own citizens.
Time is passing not just for your government – more
importantly it is also passing for another generation of sufferers from this
The Chairman and Trustees of Invest in ME
Invest in ME
Registered UK Charity Nr. 1114035