Invest in ME Newsletter
Invest in ME's March newsletter.
IN THIS ISSUE
International ME/CFS Conference News
ME or Not ME
Calling London - Survey of Patients
The Invisible Man and ME
"Lost Voices" -
the ME Book Project
ME Petition to the Prime Minister
National Knowledge Week for ME
Professor Basant Puri
International ME/CFS Conference
Sub Grouping and Treatments of
agenda for the International ME/CFS Conference on 23rd May
2008 is now available
Key Note Speech:
Case Definitions of
ME/CFS – including paediatric case definition
Dr. Leonard Jason
Gene Expression in
ME/CFS: a means of Subtyping
Dr. Jonathan Kerr
Treatment of ME/CFS - Longitudinal Observations of Cardiac and
Dr. Martin Lerner
Identification of aetiologically
distinct subject groups within ME/CFS
Dr. Julia Newton
Research on the Role of Chronic Enterovirus Infection in CFS/ME
Dr John Chia
A GP’s Experiences
of Diagnosis and Treatments of ME/CFS
Dr. Irving Spurr
Studies of Diagnosis and Treatments for ME/CFS
Dr Jean Monro
How Sub Grouping
will affect research strategies
Dr. Judy Mikovits
For the conference this year we have
tried to maximise the time given to speakers, rather than just provide snapshots
of information. So Dr Chia, Dr. Lerner, Dr Jason and Dr. Mikovits (presenters
who are rarely seen in the UK) have been given almost an hour to speak and
answer questions (in depth). We could use even more time but are limited to one
IiME are pleased to welcome Dr. Jean Monro as an additional speaker
at our conference. Dr. Monro is the Medical Director of the Breakspear
Hospital and is an internationally recognised specialist in environmental medicine.
Dr Monro is a Fellow of the American Academy of Environmental Medicine, a Board Certified US examination. Dr Monro
has previously been Medical
Advisor to Sanity and Medical Advisor to the Coeliac
In early 2007, Dr Monro was asked to be a witness for the
House of Lords' Select Committee on Science and Technology
on allergy treatments.
Conference Venue Change
Our original conference plans involved a date in early May
(as in previous years).
Due to unforeseen circumstances we had to change our plans and move the conference to the end of May
and our preferred venue was not available.
Recently, however, we were informed that last year's venue,
at One Birdcage Walk in Westminster,
was available for our 23rd May date and so we have made the
decision to move back to Birdcage Walk in Westminster.
This is only a few minutes away from the Savoy Place venue and
we hope this will not inconvenience people
(we have been in contact with all delegates who have booked
for the conference).
IiME Conference Sponsor
IiME would like to say a big thank you to IMET who again
have contributed to the conference costs this year, as they
have done in the past. IMET have attended every IiME
conference and we are pleased to welcome back good friends.
Irish people are renowned for their generosity and this has
been a big help to enable us to continue hosting the
ME/CFS Support Groups
Many thanks to those individuals and groups who are helping
us spread word of the conference to healthcare
Sponsor a GP scheme is attracting a lot of interest from healthcare
Since the last newsletter we have added
available here and our conference flyer is available to
We welcome delegates from across the world to participate
again this year. We hope as many as possible will be able to
As in previous years IiME cannot promise we will deliver a
DVD of this conference. Our objective is to provide a
platform for the most relevant research and experience of
ME/CFS and we have to use our funds
to ensure the conference goes ahead before we can commit to
funding a DVD.
However, the presentations which were given by our speakers at the 2007
and 2006 conferences are still relevant and available in
full on the DVDs (click here for details).
For £12 one can
see Dr. Byron Hyde, Dr. Vance Spence, Professor Marty Pall,
Dr. Dan Peterson, Dr. Kenny De Meirleir, Dr. Sarah Myhill,
Dr. Derek Pheby, Dr Abhijit Chaudhuri, Dr Nigel Speight and others.
Our 2006 DVD also has Dr. Bruce
Carruthers (principal author of the Canadian Clinical Case
Definition), Dr Basant Puri and Jane Colby giving fascinating
and moving presentations which are still very valid.
ME or NOT ME
The theme of the International
ME/CFS Conference is Sub Grouping and Treatments of
Correct diagnosis is so crucial
and obtaining an incorrect
diagnosis can be the most
expensive element of healthcare
- both financially and from a
human point of view.
We would like to mention two
illnesses which we have heard of
recently where the diagnosis of
ME/CFS turned out to be
incorrect causing years of
misdiagnosis and delay of
is a rare chromosome x linked genetic defect in which the
enzyme alpha-galactosidaseA is deficient. It is classed as a
neurological illness and affects all bodily systems. It is
more common in males than females.
Symptoms may start in childhood and the illness is often
misdiagnosed. Symptoms include severe burning pain
especially in hands and feet, impaired sweating, exercise
intolerance, skin rashes, corneal whirling, gastrointestinal
problems, heart problems, kidney problems, nervous system
problems and psychological and social issues.
An enzyme assay test which measures the amount of alpha-GAL
enzyme activity in the blood can be used to diagnose Fabry
More details may be found
is a relatively new autoimmune disorder with many clinical
features affecting more females than males.
It is sometimes called 'sticky blood syndrome'. This is
because people with it have an increased tendency to form
clots in blood vessels. Any blood vessel can be affected
including the veins and the arteries causing a multitude of
including headaches, memory loss, ‘cornbeef’ skin especially
around the knees and wrists, limb pain, visual loss,
fatigue, aches and pains etc.
Once diagnosis is made the main aim of treatment is to thin
More details may be found at -
Calling London - Survey
NHS LONDON March 2008 survey of patients
NHS LONDON, the
authority in charge of NHS services in London, is
currently conducting a strategic review, to improve
three aspects of NHS care in London:
and the patient
As part of the
strategic review, NHS LONDON would like to collect the
views of individual members of the public/patients who
live in London (or who travel in to access London NHS
services). NHS London would like to hear about their
individual experiences of care and treatment in the
The survey is being
conducted online via a specialist survey website.
Therefore, no IP addresses or email details of those who
take part in the survey will be visible to the survey
administrators. All participants will be anonymous
(unless they prefer to specify their contact details).
survey administrator) will email the survey’s headline
results to any participant who wishes to receive them
(results expected to be available in April 2008).
The final deadline
for taking part in the survey is Tuesday, March 18th
- the survey
administrator, Louise Oatham, on 01547-520-965 (or
Web site link at
NHS LONDON Public/Patients
Since the CMO published the report on ME
in 2002 little has been implemented from the
recommendations in that report
our comments on the
status of ME from 2007 are still relevant.
Liam Donaldson is in
more and more
danger of being perceived as
the Invisible Man in the ME world.
IiME visited the CMO's office last year but,
despite platitudes indicating that the case for a more
proactive approach to ME would be listened to, little
has been done. Yet, if deeds are missing, words remain one item which
are still plentiful ...
- Sir Liam
This exchange between IiME and the CMO's
office in the lead up to this year's conference seems to
typify the continuing indifference to ME -
ME to The CMO –
to the conference (our third invitation in three years)
is sent to the CMO.
CMO's office to
Invest in ME -
Donaldson has asked me to pass on his thanks for
inviting him to
attend the Conference on 23 May. Unfortunately, on this
occasion Sir Liam
will be unable to take part due to other commitments.”
ME to CMO -
for your email.
Do you know if Sir Liam will be sending someone in his
place from the CMO's
office? This is a very important conference for the
future treatment of ME and we
would like to have somebody representing the CMO at the
Invest in ME -
“Unfortunately, no one is available to attend.”
We wonder if any other illness with 250,000
sufferers and costing an estimated £6 billion per year would
be ignored in this way by the custodian of healthcare in
the UK whose moral principle is to protect the public.
Invest in ME have
again written to the CMO asking him to come to the
The CMO's responsibilities (from
Role of the Chief Medical Officer)
national leadership to the medical profession, helping
to explain the health policies of the day and listening
to the concerns of the profession and their ideas. In
this way I can provide, where necessary, a bridge
between the medical profession and the government.
Over the course of
a year, the Chief Medical Officer comes into contact
with large numbers of doctors through conferences and
"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."
IiME have recently been involved in
trying to help friends of a severely ill pwme
whose apparent treatment at the hands of her GP seemed to
echo that received by Sophia prior to her death. One
could hope for a little more involvement from the CMO in
resolving these problems which are occurring constantly
with regard to ME.
As Emma's response here to Sophia's
story shows, the reality is so very different from the
"The disease is a formidable one, but the
opposition and suspicion faced by sufferers
and their carers is overwhelming. I'm
haunted by the damaging and obtuse comments
that have been made over the years by
various doctors, and while Sophia's story is
tremendous sad and infuriating, I feel a
little less alone for having read it. "
We should keep in mind the CMO's
moral principle is that if ever there is a conflict it
is the public who wins."
- Sir Liam Donaldson 2007
'Lost Voices' - The ME Book Project
IiME’s book and exhibitions-in-hospitals project ‘Lost
Voices’ has got off to a flying start and the
response has been wonderful. There have been many offers of help
and requests to contribute, messages of encouragement and
appreciation from the UK and abroad, and whole-hearted support
from the 25% Group, TYMES Trust and from Lime Art - which has
offered to help with funding for an exhibition of the book work
in Manchester and support for other venues.
We are very excited by the way the project is developing and by
the quality of the contributions already received. They are
intensely moving and reflect the hidden suffering experienced by
so many people. The contributions have been written with brave
honesty and demonstrate an astonishing vigour, a passionate
desire for life and commitment to fighting for a better
understanding of this illness. There are over 20 people involved
so far -aged 14 to 60 - plus carers and family members, and
including a bed bound GP. Some contributions have been received
from individuals whose illness is shockingly severe. We believe
the book will be a very powerful and accurate tool for
demonstrating the reality of severe ME to those who have little
conception of what it entails.
It is becoming apparent that carers and families have a crucial
role to play in this project, not only by enabling those who are
so ill, to speak or write, but by ‘telling it’ from their
perspective. As carers we are the connection, the mediators
between the world of the healthy and that of the severely ill,
and can throw light on scenes that are invisible to others.
One of Iain’s tasks in our team is to use his experience and
contacts from working in a university art department to exploit
the professional networks open to him. This enabled the
exhibitions in hospitals aspect of the project to come about. We
will continue to look at ways to ensure that the book and its
message reach the widest possible audience.
There is still space for a few more participants, both carers
and people with ME. If you are a carer for, or someone with,
severe ME and would like to find out more about how to
contribute, then please have a look on the IiME website and
contact us -
We are extremely grateful to all of you who are in the process
of writing contributions, have already done so, or intend to
take part in this project. You are making it a success.
Thank you, from the ME book team.
(We hope to show progress and examples from the ME Book Project
at the IiME International ME/CFS Conference in London on
The previous meeting of the All Party
Parliamentary Group on ME/CFS failed to put Invest in
questions to Mrs Ann Keen MP who has responsibility for
ME/CFS (click here).
We have never received a reply from the chairman of the
APPG Mr Des Turner MP. At the APPG meeting some thought Mrs Keen's comments
were reassuring in recognising ME as a physical illness.
Yet a recent reply from Mrs Keen to a friend of ME
(received after the APPG meeting) shows the same
pattern of misinformation or misunderstanding as exhibited in the past.
Some interesting points to note came
from Mrs. Keen's reply.
Regarding the classification of ME/CFS Mrs Keen writes -
|The World Health
Organisation (WHO) classifies CFS/ME as a
neurological disease, and in the
International Classification of Diseases, it
is coded G93.3. The government has long
recognised the WHO classification of CFS/ME,
and this is the definition used in the
guideline (the NHS Plus Guidelines which
were heavily criticised by many ME charities
The manner in which the NHS Plus Guidelines were brought
out and their deplorable and fallacious content were an
appalling indictment of government misinformation.
Regarding the Gibson Inquiry Mrs Keen
writes the following -
explain that the Department of Health was
not involved in this report, and we have no
plans to respond to or implement the report,
which has now been overtaken by the recent
NICE guidance for the treatment of CFS/ME.
The main recommendation of the Gibson report
was more funding for research into CFS/ME.
On the PACE trial Mrs Keen writes -
patients recruited to the PACE trial will
receive detailed patient information
literature and will sign a consent form to
confirm that they understand the full
details and implications of taking part in
the trial. This trial is supervised by an
independent steering committee and data
monitoring and ethics committee. There is no
question of compulsion.
On research funding Mrs Keen writes -
has been a strategic priority area for the
MRC for a number of years, and while not
currently funding any research specifically
related to the biological effects of CFS/ME,
the MRC remains committed to funding
scientific research into all aspects of
CFS/ME including evaluations of other
treatments and studies into the biological
basis of the condition.
We can only guess who is advising Mrs Keen on ME/CFS.
Invest in ME
have written to Mrs Keen again, repeating
our invitation to attend the London conference in the hope that
some change in attitude can be made.
ME Petition to the Prime Minister
- Falling on Deaf Ears
The response to the
by Konstanze Allsopp
get the Health
Service and medical
profession to accept
ME/CFS as an organic
disorder and not as
has seemingly (see
here) failed to produce anything from the UK
government other than the static, unscientific and
visionless statements for which NICE were so heavily
criticised for in their guidelines for ME/CFS.
The response states -
"There is currently
very little information about the relative benefits of
cognitive behaviour therapy (CBT) and graded exercise
treatment and a scientific trial is the only way to find
out which is the most effective approach."
Despite the chorus of complaints from ME Support Groups
and people with ME and their carers that neither of
are worth the investment in time and money the
government refuses to listen.
From a Co-Cure posting about a
recent Dutch pilot study (Koolhaas,
et al., 2008, Netherlands) comes this extract
"(the study) reports that only 2% of
ME/CFS patients are cured by CBT, while the greatest
share (38%) are adversely affected - most reporting
substantial deterioration. It is especially notable that
employment and education are negatively affected.
This is in sharp contrast to the claims of psychiatrists
and the Dutch Health Council that 70% of patients
improve. Previous studies have also ignored or denied
the negative affects of CBT on ME/CFS patients. The
pilot study, recently published in the Dutch Medical
Magazine, Medisch Contact, concludes that the previously
reported claims of 70% improvement in ME/CFS patients
receiving CBT are vastly overstated and misleading."
An English summary is contained in the document of the
Dutch-language study -
There is a great deal of biomedical evidence
regarding ME/CFS but the government does not see fit to
invest resources in determining the
epidemiology or possible diagnostic markers of ME/CFS.
The government determines not to take up the
recommendations from the Gibson Inquiry into ME/CFS
which suggest heavily funding biomedical research, and
giving biomedical research the same level of funding as
has been given to a powerful psychiatric lobby who are
promoting CBT as a treatment for ME/CFS.
One wonders if it would be acceptable for other
illnesses to have no research into the cause,
pathogenesis or even establish a standard set of
The hypocrisy within the reply from the Prime Minister's
office is underlined when it states -
is important that health professionals recognise that
people can vary in response to the treatments available
and that it is appropriate to review therapy if symptoms
appear to worsen as a result'
yet it fails to
do anything but treat ME/CFS with a one-size fits all
Well done to Konstanze for initiating this petition and
for all of those signing it. What a shame that ministers
have failed to treat it with any dignity.
National Knowledge Week for ME
Last year IiME wrote to Sir Muir Gray,
Chief Knowledge Officer of the NHS and a lifelong
advocate of patient empowerment. We suggested a
knowledge week for ME/CFS would be appropriate within ME
Awareness Month. IiME
have followed this up this year and have again suggested that a
Knowledge Week on ME could be created at the end of May,
culminating in the IiME International ME/CFS Conference.
“In the 21st century,
knowledge is the key element to improving
health. In the same way that people need
clean, clear water, they have a right to
clean, clear knowledge”
- Sir Muir Gray
IiME's aim is to educate regarding ME
and National ME Knowledge Week would be a sensible and
More details about Sir Muir and his
department may be found at -
recently visited Professor Basant
Puri at his Hammersmith Hospital
base whilst participating in his
current research project (Non-invasive
structural and functional
neuroimaging in ME/CFS).
purpose of Professor
Puri's study is to understand
what happens in ME-related
disorders. A medical examination
is performed, tissue samples are
taken (a small blood sample and
a breath sample) and a niacin
skin test is made. An MRI-scan
is also performed. The machine
used for this was more advanced
than is usually used in
impressed by Professor Puri's
manner and dedication (he was
working at the weekend when we
visited). His work should be
producing data over the next few
years and we have provisionally
invited Professor Puri to
present at our 2009 conference.
We hope also to welcome
Professor Puri to the conference
on 23rd May.
this type of research as it is
producing objective scientific
data which, as with the existing
biomedical data, should result
in a clear direction being
provided by the government to
like to thank our friends and
supporters for continuing to
donate. We have to respect their
privacy but we would just like
to say a thank you for your
thanks to Derryan and the Mid
and West Wales ME Group
donation following a collection
day. Thanks to all.
Best wishes to all
Invest in ME
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