Invest in ME's June/July 2008 newsletter.
IN THIS ISSUE
International ME/CFS Conference Success
Thyroid paper from Hyde
"Lost Voices" -
the ME Book Project update
Google ME Awareness Day
International ME/CFS Conference
Sub Grouping and Treatments of
TREATMENTS ARE AVAILABLE
The 3rd IiME
International ME/CFS Conference in London was attended by
delegates from thirteen countries and clearly showed why a
strategy of biomedical research into ME/CFS using sub
grouping is the correct way forward in dealing with this
After years of being
presented with statements from government ministers and
departments, MRC and others involved in healthcare provision
about the limited knowledge regarding ME and the lack of
treatments for the illness the delegates at the IiME
conference left the conference asking why nothing has been,
or is being done, in the UK to treat patients with ME when
the speakers at the conference presented evidence of
effective treatments which were curing or substantially
improving some patients' health and had been doing so for
IiME publish a review
of the 3rd IiME International ME/CFS Conference in London -
The question which
should be directed at the Medical Research Council, the
Chief Medical Officer and the Secretary of State for Health
is "why are you doing nothing?".
We shall continue to pose this
question as we continue with the post-conference
We would like to thank all of our
presenters who did such a wonderful job in conveying the
need for Sub Grouping and described the treatments which are
available. We would also like to thank those who helped us
with the conference costs. We had a very kind and generous
donation from one source who paid for the costs of one of
our presenter's travels to the UK and we had donations from
our wonderful supporters which were put toward the costs of
the conference. This has helped tremendously in easing the
financial burden on the trustees at IiME. Many thanks again
for all of your support.
2008 Conference DVD
The conference DVD is in the process of being produced and will be available in early July.
We thank everyone for the support shown to us in requesting
that we produce the DVD again this year. The 2008 DVD will
have all of the presentations plus
plenary and interview sessions with Dr
Leonard Jason, Dr John Chia, Dr Martin Lerner, Dr Judy
Mikovits and Dr Irving Spurr.
The conference DVD may be ordered via
At the conference the Chief Medical Officer's
and the Medical Research Council's representatives heard the
offer made by the Whittemore-Peterson Institute for the CMO, the
MRC Chief Executive, the Secretary of State for Health and Mrs
Ann Keen MP to visit the WPI in Nevada in the next 6-8 months.
Invest in ME have followed up this offer by sending the
invitations via recorded delivery to the above mentioned
We have to say that, over a month after
receiving the invitations, only the CMO's office has
acknowledged receipt. Neither the Secretary of State for Health,
nor minister responsible for ME Mrs. Anne Keen, nor the head of
the MRC, Sir Leszec Boryziewich, have responded to this
It is almost standard practice to view the
continued indifference of government ministers to the plight of
its citizens despite our many attempts at engagement. We are
aware of the systemic bias of the MRC - something we have
continually tried to change by offering to form a party of
representatives from the ME community to visit the MRC to
discuss changes required, and by offering them participation in
our annual biomedical research conferences. We believe these
efforts are having some effect, however indirectly, though our
opposition to endorsing any MRC plan for collaboration with the
vested interests of the psychiatric lobby may mean that the MRC
will exclude us (and others taking a similar stand) from any
patient group discussions.
We believe that the WPI is the model which needs
to be established in the UK and we will do anything to
facilitate the visits to Nevada of these public servants. We
have also set up a page on our web site with a link [see
here] to the WPI where one can make donations. We
believe this is currently the best way forward - to show support
for the WPI and its development.
We will follow up our invitation requests to the
MRC, CMO and DoH and we invite everyone to do the same. The
offer is easily acceptable and could lead to real value for the
government, MRC and CMO who seemingly fail to display any real
vision in investigating treatments or a cure for ME.
At this time, after so long being in denial, or
even willfully ignoring the evidence and the situation, these
officials in the government, Medical Research Council, official
organisations and others involved in deliberating on the
treatment of people with ME, all need to be called to account
for their actions, or lack of.
The delay in
producing June's newsletter has been due, in part, to IiME
having recently been involved with several people with ME whose
situations are appalling and need attention. These are stories
where people are denied benefits because they have a diagnosis
of ME; denied access to any sensible or proper treatments
because their GP does not "believe" in ME; forced to accept
unwanted referrals of a child to a distant "ME establishment"
because their PCT has used coercion with the threat of the child
being taken away and made a ward of court; or have actually been
sectioned by a GP whose sense of morality is inferior only to
their knowledge of ME.
And there is
even worse which we are not at liberty to mention here. All of
this is occurring on the sixtieth anniversary of the NHS being
After organising and hosting a biomedical
research conference which has clearly shown that sub grouping of
ME is necessary and that effective treatments are already
available for some then these cases clearly reinforce our view
that compromise is not an option and accountability is now the
watchword for these officials who are not treating ME with the
urgency is has always required.
Accountability - The CMO - A Time for Change
Medical Officer, Sir Liam Donaldson, declined the invitation
to visit the Whittemore-Peterson Institute in Nevada,
USA, stating that he has not time in his diary. He has also
declined the invitation to attend the opening of the WPI in
2010 by stating that it is too far in the future. IiME have
responded by requesting the next available free date in Sir
Liam's calendar so that the WPI invitation may then be
re-arranged. We have had no reply as yet.
"A small but
part of my
Role of the Chief Medical Officer
One would think that an
invitation to visit the model centre for researching ME
would be of interest to a nation's Chief Medical Officer
when that illness is responsible for possibly a quarter of a
million sick people, and probably affects several million family
members who live with the consequences of the illness
on children, wives, husbands, relatives etc.
of things do
for the NHS,
Role of the Chief Medical Officer
But no. The Invisible Man of
the healthcare system seems not to concern himself with
the plight of pwme. He seems not to be interested in
improving services or listening to ideas regarding ME.
The CMO has
declined all invitations to attend or speak at the IiME
International ME/CFS Conferences (although he finally sent a
representative to this year's conference for less than a half
day - yet nothing has materialised from that representation).
It is worth
repeating our March newsletter comments regarding the
responsibilities of the CMO -
the day and
this way I
Over the course of a year, the Chief Medical Officer
Role of the Chief Medical Officer
We see no national
leadership being displayed regarding ME.
Sir Liam Donaldson
is not listening to researchers who can demonstrate the physical
basis of this illness and the treatments which might save lives.
We attempted to
get the CMO to make ME a notifiable illness in schools,
especially as ME is the leading cause of long term absence from
school for students. But no action was taken.
"There are constant
risks of new and emerging threats to the health of the
public arising from infectious diseases or other
I often become
involved in trying to resolve such problems, working
with ministers to provide the necessary expertise in
analysing the situation and taking necessary and
It is in this arena that the media role of the Chief
Medical Officer becomes prominent. I am well placed to
explain the context of the problem, provide advice and
reassurance where possible and appropriate, and respond
to questions and concerns."
Role of the Chief Medical Officer
We hear nothing from the CMO
regarding the status of ME since his 2002 working group
published recommendations - none of which have been
"People hear about our policies when they are launched and perhaps hear nothing more about them for a long time. When progress is reported, they then do not have a clear picture of the original policy that a particular progress report relates to. In this section I want people to have access to information about the progress of some of our important policies. I want them to be aware of the work that is being carried out on their behalf." Sir Liam Donaldson, CMO."
When looking at the CMO's
Progress on Policy there is nothing about ME!
People with ME and their
families have been subjected to inequality throughout their
experience of ME, from being diagnosed to being treated or
managed or when having benefits denied by the government's
outsourced disability and benefits services. Sir Liam's
statement on inequalities -
"Some small areas of the country have levels of health equivalent to the national average in the 1950s. It's those deep-seated differences in the health experience of people in the most deprived parts of the country that we need to do something about."
Yet still people with ME and
their families/carers must waste unnecessary and inordinate
amounts of energy and time battling against an establishment
view of ME which belongs to the 1950s.
"I believe an institution that ignores its problems will continue to make mistakes. Learning from the bad experience of one patient might save the life of the next,.."
visited one of those severely affected people that we
mentioned above - a lady who had
contacted us for help. We'll call her Sheila. We were
devastated by what confronted us - this is part of the report
"Sheila is extremely ill and very frail
with hardly any strength. Her flat is in a terrible
state because of her ill health, rubbish and papers
piled up everywhere.
She is sleeping in the living room on a low bed,
which she has covered in a black bin liner as she is
often incontinent and sometimes can't get to the
The commode is in the living room and can only be
emptied when somebody does it for her.
One of the bedrooms leads out on to a sort of veranda
which is open access to all residents, there is no
lock on this door so anyone can walk in.
Her arms are very weak (and one probably is damaged
We were horrified to see that Sheila was unable to
lift the food to her mouth, she had to feed herself
the way an animal has to. She is very thin and under
Sheila has been on her own for years."
Sheila no longer receives any
The performance of Chief Medical
Officer of the UK has been ineffective, lacking in leadership
and unwilling to engage with ME patients or their carers who
are crying out for change.
Unless some change becomes
evident, unless some action is soon taken, unless the Chief
Medical Officer of this country decides to take
definitive action to end this appalling situation regarding
ME, then IiME feel that the Chief Medical Officer should resign and be replaced by
somebody who is genuinely interested in improving the lives
of people with ME and their families.
We cannot be
sure who would replace Sir Liam. We can only think that now
must be the time to end this constant battle with
the establishment on how ME is to be treated and researched.
We see no sign of this with the present incumbent of the office
Now is a time for vision and
leadership. It is time for a
In a recent exchange in the
House of Lords the Countess of Mar asked
Her Majesty's Government:
"Whether the current NHS review
will include consideration of chronic fatigue
syndrome/myalgic encephalomyelitis (CFS/ME) as a
long-term neurological condition."
Under-Secretary of State, Department of Health
(Lord Darzi of Denham):
"My Lords, the Government
recognise that CFS/ME is a poorly understood
condition that can be very distressing to
patients, their families and carers. The
long-term conditions pathway is one of the
care pathways that strategic health
authorities are examining as part of the NHS
next stage review. The review, which is
being led by local multidisciplinary working
groups, will increase awareness and ensure
better care for people with CFS/ME and will
help to support local delivery of the NSF
for long-term neurological conditions."
The Countess of Mar:
"My Lords, I thank the
Minister for that reply. Does he appreciate
that, despite the fact that it has been 40
years since the World Health Organisation
recognised ME as a neurological disease and
20 years since the Department of Health did
so, adults are still sectioned or deemed as
lacking in capacity and children whose
parents are blamed for their illness are put
on the at-risk register or are made wards of
court, with people from both these groups
forcibly put into mental hospitals? This has
been described to me as abuse by
professionals. What has been the outcome of
the CMO's 2002 recommendations on the £8.5
million supposedly spent on CFS/ME, which
has apparently come to nothing, and what
will happen in the future?"
Lord Darzi of Denham:
Lords, the Government accept the World Health
Organisation's classification of CFS/ME as a
neurological condition of an unknown cause. My
ministerial colleague Ann Keen reaffirmed that
position at the meeting of the All-Party
Parliamentary Group on ME in January of this
year. Subsequent to the CMO's report, the
Government allocated funding of £8.5 million for
two years, 2004–05 and 2005–06, to set up
specialist CFS/ME services where none existed
previously. These centres, of which there are 13
across the country, would improve services for
those with CFS/ME."
when I was a student, I had a professor who,
when asked the cause of a very difficult
disease, would usually reply, "Nobody knows,
tiddly-pom". I suspect that ME falls into the
"nobody knows" category. It is welcome news that
pathways are being set up to look at this
condition and to decide what is to be done in
the health service, but how long will it be
before the condition is taken seriously and
protocols are in place to deal with the very
real consequences for patients of this disease?"
Lord Darzi of Denham:
Lords, I thank the noble Baroness for
acknowledging that for many years there has been
a heated debate about CFS/ME among researchers,
practitioners and patients. In fact, few
illnesses have been discussed so extensively.
The underlying issue is whether more research
and development should be undertaken in this
field not just on the symptomatology but on a
diagnostic test so that we can at least plan
different treatment protocols. In August 2007,
NICE looked at the evidence relating to
treatment protocols and recommended cognitive
behavioural therapy and graded exercise therapy,
as there was some evidence to support their
suitability in the treatment of this condition."
so far as I could hear, the Minister failed to
respond to the noble Countess's point on
patients with this disease being sectioned and
children being put into care as a result. Would
he be good enough to do so now?"
Lord Darzi of Denham:
Lords, I have acknowledged that CFS/ME is a
neurological condition, but I am not aware of
the circumstances in which associated illnesses
might require sectioning. The noble Countess
wrote to me about one specific case and I shall
respond in relation to that."
Baroness Howe of Idlicote:
"My Lords, can the Minister explain to the House
why the Royal College of General Practitioners
continues to insist on categorising CFS as a
Lord Darzi of Denham:
Lords, the Government have made it clear that
they consider that CFS/ME should be classified
as a neurological condition. It is for
professional bodies to look at the evidence base
and I will encourage the Royal College of
General Practitioners to look at the WHO
classification, which, as I said earlier, is
that it is a neurological rather than a mental
Parallel Worlds - NICE Reviewed
The MRC representative at the IiME
conference confirmed that Professor Stephen Holgate is to
act as chair of a new multi-disciplinary panel set up by the
MRC which will focus on the subtypes and aetiology of ME/CFS
as part of a plan to fertilise cross-disciplinary research
activity in this field.
IiME stated in explicit terms to the MRC
representative that we were not hopeful of where this would
lead, especially as we the invitations to Professor Holgate
to attend the IiME conference, extended both personally and
via email, resulted in no reply. We wondered how such a
multi-disciplinary committee is to be formed if the most up
to date biomedical research on display in the capital of
this country is ignored.
The conference theme of sub-grouping and
treatments clearly showed what is possible and where the
future direction should lie. Mixing different disciplines to
win research money from the MRC is a lost cause if it
collaborates with organisations and individuals who view ME
as a behavioural illness and will do nothing to help people
It will be interesting to see how the MRC
respond now to the need for sub grouping and continuing
calls for more funding for biomedical research made by IiME
Nowhere is the falsehood of mixing
psychiatric approaches toward ME more clearly shown than in
the unsatisfactory NICE guidelines - a document which took
two years to create and added little to help healthcare
staff dealing with ME, patients or their families. Instead
it presented its predetermined view that CBT and Graded
Exercise Therapy were the main treatments.
The IiME International ME/CFS Conference
2008 has completely destroyed that view - showing as it does
how effective treatments have been available for a sub set
of patients for many years and how the most effective way
forward is to research these sub groups.
The fact that NICE ignored any biomedical
evidence showing these treatments has invalidated those
responsible for the delivery of the NICE Guidelines for ME.
It is entirely appropriate that NICE were in
court on 17th June, in London, attempting to rebut requests
from patients for a Judicial Review of the NICE guidelines.
The case against NICE was brought by Doug Fraser and Kevin
Short and we applaud their stand in winning this first
battle against NICE.
NICE will now be brought before a
Judicial Review in the autumn.
This is not new territory for NICE. Indeed,
the whole organisation might well warrant a review of its
structure, its remit and its record of performance.
Hyde and Thyroid in ME
January 2007 newsletter
that Byron Hyde would be talking of the prevalence of thyroid
malignancies in pwme at the IiME 2007 conference. We stated
that Dr. Hyde was one of the handful of world physicians
with such a long experience of examining only ME, CFS and
fibromyalgia patients and Dr Hyde's presentation is
available on our 2007 conference DVD.
Dr Hyde's paper on this was published in
October 2007 and can be seen here -
- The ME Book Project
Invest in ME’s Book
Project – ‘
– has been vigorously taking shape over the last few months.
There is now a good body of pages made up from wonderful
contributions from people whose honesty, courage and
determination are extremely moving. Not only were pages on show
at the Conference but it was an opportunity for Dr Leonard Jason
to see the work.
We are very honoured that Dr Leonard Jason has
agreed to write the foreword to the ME Book Project.
He was both impressed and very interested in it and says he is
honoured to have been invited to write the foreword, and we are
absolutely delighted that he is prepared to help in this way.
knowledge and experience
makes his unique a position to make a real difference in terms
of understanding the background to the situation we find
ourselves in. He also pointed out that the project is actually
a piece of research. We didn’t realise the full significance of
this until later, but it does mean that the book and the ‘lost
represented in it become part of the pool of material available
to other researchers to build on. Dr Jason particularly asks to
be able to show it to his research students. It shifts the
‘being heard’ for our ‘lost
to quite another level.
Dr Chia was also extremely interested in the
project and when invited he also readily agreed to write a
contribution. This will be a personal response to the material
in the book in the light of his experience of his son
developing ME/CFS and the amazing research he, his wife and son
have so passionately carried out. He has demonstrated the
importance of enteroviruses in causing this illness and has
developed treatments that resulted in his son’s recovery.
The book will not only be a
very vivid description and evocation of the impact that ME has
on individuals and family lives, but will also give an accurate
and comprehensive context within which to understand a situation
that results in the neglect and even denigration of such
prolonged and serious physical illness. It will demonstrate the
urgent need for further biomedical research and treatments in
If you too would like to help - to take part
in this project and have your voice heard - if you care for
someone, whether an adult or child, with severe ME - or are
someone with severe ME – and live in the UK - then please let us
know as soon as possible by emailing
ME Book Project or
ring and leave a message on - 0117 9733231.
The Lost Voices project is grateful for the
help and encouragement it has received from other organisations
and groups (such as the 25% Group, TYMES Trust, MERUK, AYME
Grads, and LIMEart).
To enquire further and/or to participate in the project
please contact IiME -
The aims of the book and exhibition are -
To provide an opportunity for people who are usually
invisible and unheard to speak for themselves, so that their
situation can be seen and understood more clearly.
To show evidence of the devastating impact this physical
disease has on individuals and their carers and families.
To bring to more public notice the plight of ME sufferers.
To help change a widespread lack of comprehension based on
general misinformation, vague definitions, guessed numbers
and statistics, to the development of empathy and concern
for those who are so ill.
To educate the medical profession, the public and others
such as wider family.
To encourage a sense of community among ME sufferers and
those supporting them.
Google ME Day
Was our attempt to
get Google interested in ME by requesting a
- for ME Awareness Day (12th May) - recognised by
Nightingale (a well-known ME sufferer and symbol of
the Nightingale Foundation) was mentioned and
appeared as shown below
about as near as we probably could
Best wishes to all
Invest in ME
Support ME Awareness -