The
international ME/CFS Conference on 29th May promises to be the
best attended so far.
With twenty
places reserved for medical students as part of the Invest in ME Biomedical
Research Fund and bookings up on this time last year early booking is advisable.
The conference
has shown the increasing interest in hearing the latest biomedical research and
treatments for ME.
Already
thirteen countries are represented at the conference and the opportunities for
networking amongst healthcare professionals and patient groups are unequalled.
The conference
will be showing new research such as that on cytokines from the Whittemore-Peterson
Institute where Dr Judy Mikovits and her colleagues have developed a diagnostic
blood test which measures cytokines and chemokines that can be used to confirm a
diagnosis of ME.
Other research
is confirming the data from the IiME 2008 conference - Sub Grouping and
Treatments of ME - with research projects demonstrating the fact that treating a
subset of people with ME with anti-viral drugs can greatly reduce symptoms and
give people their lives back.
In Norway there
has been recent publicity of bedbound patients being investigated and
subsequently treated by Professor Kenny De Meirleir. Professor De Meirleir's
investigations are uncovering various reasons for these patients' illness and
some patients are already reporting remarkable improvement in their condition.
Professor De Meirleir will be presenting his research and results at the
conference.
The complications of
long standing ME is poorly understood and rarely discussed or even
researched. An epidemiological study of this nature is something which needs to
be performed and, again, we look to the WPI for leadership here. We know that
Annette Whittemore is asking the questions such as how many patients experience
neurological problems such as seizures, or develop MS, heart
disease, gastrointestional disease, (Crohn's) etc, osteoporosis, and/or cancer?
The WPI has a cohort
that have developed mantel cell lymphoma, and many more who have developed an
immune marker prevalent in lymphoma. The WPI may well have data ready for
publication by May. We hope also to learn of cytokine (inflammatory) panel and
immune profiling studies to be completed by May.
Along
with the WPI we feel that it is time to increase awareness of these patients'
level of disability and suffering to challenge those who characterise ME as
benign.
Many thanks
to those individuals and groups who are helping us spread word of the conference
to healthcare professionals. The
Sponsor a GP
scheme is still available for healthcare staff and local ME groups to work
together.
Since the last newsletter we have added
an a4-poster
available here
as well as our conference flyer
available here.
Conference News - Professor
Basant Puri
We are pleased to add
Professor Basant Puri to our line-up for the conference. Professor Puri was a
speaker at our first ever international conference
and was on our intended
list of speakers early on. We are glad that he is able to present for the first
time details of his latest research at the conference.
Our agenda
for the International ME/CFS Conference on 29th May 2009 is now available -
see here.
Hillary
Johnson Pre-conference Presentation Dinner - 28th May
We would
like to remind everyone of the pre-conference presentation on 28th
May with Hillary Johnson,
author of
Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic
-
see here]. There
are still some tickets available for this event. The evening will begin with
Hillary discussing the role of the US Centre for Disease Control (CDC) and
how its influence has affected the way ME/CFS has been perceived, not
just in America but around the world.
Hillary will also have copies Osler's Web with
her and all of the conference presenters are invited - please
see here for details.
Dr Byron Hyde once said at one of our previous conferences that,
if he were asked what he needed for resolving the problem of ME that he would
include a lawyer and a historian. For those interested in the history behind the
current situation with ME and why there is so much politicisation around ME and
why lives continue to be lost to this illness today then this presentation is a
unique opportunity to learn from somebody who has been through all of the
politics since the Incline epidemic in the eighties.
Conference DVDs
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 limited funds
to ensure the conference goes ahead before we can commit to funding a DVD.
We'll do our
best. Meanwhile, we should mention that the presentations which were given at
the 2008, 2007 and 2006 conferences are still relevant and available in full on
the DVDs (click
here for details).
Accountability....Again
Another
conference comes and with it come the familiar declines to attend by the
Secretary of State for Health and his sub-ministers, the head of the Medical
Research Council and by the Chief Medical Officer
In June 2008
the IiME newsletter (see
here)
documented the lack of accountability exhibited by those officials entrusted
with the healthcare of people with ME and their families.
This lack of
accountability continues. We are disappointed that these public servants have
again declined to attend the premiere conference on ME in Europe. However, it is
not because of these refusals by these individuals to have their respective
organisations and departments represented at the conference which makes us
disappointed. It is the continued indifference and lack of accountability being
shown by the government, the CMO and the MRC to the plight of people with ME and
their families.
Whilst it is
possible to have doctors, patients and carers travelling to the Invest in ME
conference from all over Europe and as far afield as Australia, New Zealand and
North America it seems impossible to get the CMO, the Minister for Health or
anyone from the MRC - despite some of them only having a 200 metre walk to the
conference venue in Westminster.
We invite
everyone to write to the respective departments and ministers to state their
views as to why they should be at the conference, to listen to the latest
biomedical research on ME.
|
"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."
- Sir Liam Donaldson Chief
Medical Officer
from
About the Chief Medical
Officer
|
Petition
Dave Loomes has
made this even easier. Dave has set up a petition calling for these public
servants to be present at the conference in May.
The petition
reads -
|
We the undersigned petition the
Prime to send 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 previous IiME conferences in 2008 attended by
presenters and delegates from 13 countries, from Europe, USA, Australia,
New Zealand and South Korea demonstrated that "PROVEN BIOLOGICAL MARKERS
& TREATMENTS FOR SOME SUB TYPES OF ME/CFS ARE ALREADY THERE!" |
Now the challenge is for
the Chief Medical officer, the Medical Research Council and the Government to
take up the challenge laid down by the conference in 2008 and commit to a
national strategy of biomedical research into ME, without any conditions or
provisions for enforcing the psychosocial model to be incorporated.
See the
petition here
http://petitions.number10.gov.uk/AttendIiME2009/#detail
The petition has already reached over 800
signatures so please add your name to support us.
Dave's idea
has also generated another idea -
Lost Voices -International
ME Awareness Month 2009
Our conference is intended to help focus more attention on the
severely affected people with ME.
What better way to raise awareness during ME Awareness Month
than by highlighting the plight and saluting the resilience of these Lost
Voices. To accompany the book we intend to use the title of the book to herald
ME Awareness Month with an appeal to hear the people who are often neglected -
from healthcare, from research trials and from society.
Lost Voices - International
ME Awareness Month 2009
Dave Loome's
petition has generated the idea of raising more petitions during ME Awareness
Month regarding ME. The idea is sound.
Many aren't
able to attend events and signing a multitude of responsible petitions relating
to ME will provide a way of changing views and demonstrate the need for action
by those officials who do nothing.
Another idea is to sponsor a Lost Voices book during ME
Awareness Month and having it delivered to GPs, healthcare staff or educational
or government staff, with a message - see here.
Any further ideas please send to us.
Lost Voices - The Book
Although there aren't many groups or national, subscriber-based charities
who have ordered the Lost Voices book, it has, nevertheless, been
distributed to many in the UK, with some taking many orders and sharing the
cost of distributing them to others.
We are pleased that three libraries and two PCTs have also ordered Lost
Voices.
Lost Voices has now been distributed to fifteen countries.
Medical
libraries
We have
always believed that better education is the key to improving the situation
and the hopes for the future for people with ME.
Stacey Lord
has pre-empted our plan to make the book more widely available to the
medical libraries around the country. Stacey has contacted many people and
raised enough money to send the books to most of the medical libraries in
UK. Invest in ME will pay for the others to receive a copy. We hope this
will be able to directly influence healthcare staff.
There are 37 medical libraries and IiME will be sending copies to the others
so that each library has at least one copy.
NICE
The verdict
from the Judicial review into the NICE guidelines for ME returned,
predictably, in favour of NICE. Our press release indicated our views on
this - see here.
The ME patient community are understandably disappointed that NICE
have been allowed to continue with their guidelines which will neither
benefit healthcare staff dealing with ME and certainly not patients. Yet out
of this comes hope. The actions of two individuals, severely affected ME
patients, succeeding in bringing this action against this establishment
machine has shown that ME patients are on the way to winning this battle for
proper recognition, funding and treatments for this illness. This will not
be the end. The science which is providing the indisputable proof the
organic basis for ME (based in WHO ICD-10 G93.3 classification) will
continue and we will see breakthroughs. Healthcare staff are coming round to
the truth about this illness. Patients and patient groups are now armed with
better education to fight the ignorance and prejudice which has been allowed
to build up over the years.
NICE's
press release after the verdict was tellingly informative of their true
nature and completely lacking in any awareness of the impact that their
establishment juggernaught machine has had on two chronically-ill patients
and hundreds of thousands of patients and carers affected by this verdict.
It is
worthwhile stressing the fact that none of the work mentioned above regarding
treatments being found for ME would be performed if it were left to NICE - which
offers no treatments but only management base on flawed research and ineffectual
or dangerous therapies.
We defy NICE
and those career-psychiatrists and establishment organisations who have
manipulated the truth about ME who characterise ME as a benign illness which can
be cured by talking to it. The conference will focus more on these issues.
Human Rights
As NICE
closes one door another possibly opens.
3
February 2009
The
Equality and Human Rights Commission today welcomed the Government's
plans to empower disabled UK citizens to exercise their rights under
the UN Convention on the Rights of Persons with Disabilities, which
the Government has pledged to ratify by Spring 2009. The Convention
reaffirms that disabled people have - and should be able to enjoy -
their human rights on an equal basis with non-disabled people and
sets out the steps governments are expected to take to make these
rights a reality. Other human rights treaties, such as conventions
on the rights of children and women, have had a major effect in
addressing human rights violations around the world. In a written
statement this morning, the Minister for Disabled People Jonathan
Shaw MP announced the Government's intent to sign the UN Disability
Convention's 'Optional Protocol'.
Once ratified, the protocol will allow individuals or groups of
individuals to bring petitions to the UN Committee if they believe
that their Convention rights have been breached. This step will
also give the relevant UN Committee authority to undertake
inquiries, when reliable information is received into allegations of
grave or systematic violations of Convention rights. Ratification of
an Optional Protocol is technically a first for the UK in relation
to an international human rights treaty. |
demonstrating
that the government and establishment policies regarding chronically-ill,
disabled people are not at all coordinated.
New Scientist
The responses to a recent article by New Scientist which publicises the
views of Professor Simon Wessely show how well informed and articulate the
ME patient community is. In response to Wessely's comments in the article
the New Scientist web site response page has been inundated with informative
views and reasoned debate which so easily destroy the content of the New
Scientist article.
Click here
to view the article and the accompanying responses. It is almost
alarming to see how easy it has been to pick apart the "think themselves
sick" advocates of ME. Those portraying ME as a somatoform illness are so
effortlessly beaten by science, published evidence and, indeed, logic.
Bearing in mind the previous article on human rights we wonder how the
current set of professors and doctors who treat ME as a behavioural illness
will fair in the future where patients, who have been misdiagnosed or
diagnosed with ME but treated with CBT/GET, will possibly be able to seek
compensation. That day may be nearer than some think.
And it cannot come too soon for Milton Keynes NHS. Their Policy Statement
130 is typical of the ignorance embedded in the NHS and allowed to fester by
some organisations and the DoH.
The South Central Priorities Committees have reviewed
the evidence for
interventions in chronic fatigue syndrome/myalgic encephalomyelitis
(CFS/ME) and in line with NICE Guidance consider that the evidence of
clinical and cost effectiveness for cognitive behavioural therapy (CBT)
and graded exercise therapy (GET) is sufficient to recommend that PCTs
should commission either or both therapies within their local pathways
for CFS/ME.
Where CBT and/or GET are not currently commissioned,
they are recommended as a service development for future PCT
commissioning.
All other interventions for CFS/ME and the provision
of any intervention on an
in-patient or residential basis are considered to be a LOW PRIORITY due
to lack of evidence of clinical and cost effectiveness.
CFS/ME comprises a range of symptoms including
fatigue, headache, sleep
disturbance, difficulty in concentration and muscle pain. An
individual's symptoms may vary in severity and there is variation
between patients. Although many patients improve over time, others do
not.
The cause of CFS/ME is unknown.
Many different interventions for CFS/ME have been investigated in
clinical trials of varying quality.
There is increasing evidence from good quality trials
to support CBT and/or GET
in the management of CFS/ME.
CBT with or without GET is more effective than
standard medical care and does not appear to be more expensive.
There is evidence for effectiveness in both adults and
children.
There is currently insufficient evidence to support
any other intervention in
terms of clinical or cost effectiveness.
This includes immunological treatments, anti-viral
therapy, pharmacological
treatments, dietary supplements, complementary or alternative medicine,
multi-treatment regimes, buddy-mentor schemes, group therapy and `low
sugar low yeast' diets.
There is currently no evidence relating to patients
with severe CFS/ME (who are house or bed bound)'.
There is currently no evidence to support the use of
in-patient or residential
settings to deliver effective interventions for CFS/ME.
There is currently no evidence to suggest that any
group or sub-group of patients with CFS/ME will benefit particularly
from any specific intervention or that patients who have failed to
improve on one intervention may do better on another. |
This demonstrates how dangerous the situation is for people with ME and why
so little progress is being made to help patients. The legacy of the NICE
guidelines will be to leave this ignorance in place for years to come. A
letter is on its way to Milton Keynes NHS.
ME Story
| "If you are to be
believed, and your answers truthful, then you have the mental age of a
senile 71 year old, and I should section you immediately! Now if you
would truthfully like to tell me what personnel experience led to your
M.E. then I might be able to help you! What devastating event led to
this mental problem, what made you so depressed?"
See more of Debbie's story
-
click here |
Research
Cheney
seminar to include stem-cell therapy results on two patients
Recent news that President Obama is to
allow stem-cell research to resume brings us to the implications for ME.
From the CFS/FM Support Group of Dallas - Fort Worth there has been news of
Dr. Paul Cheney's protocol for treating ME with stem cell therapy.
The first of two CFS patients have received a series of umbilical cord stem
cell transfusions over the first ten days of February, and the pre and post
testing done before and after the stem cell transfusions shows significant,
dramatic improvement. The stem cells are known to circulate and continue the
healing process for up to six months.
Results are not yet conclusive to define the final outcome
of the stem cell transfusions, yet it is reported that initial results are
exciting.
Dr Paul Cheney will be speaking on Saturday, April 25th at
the Fairfax Board Auditorium of the Government Centre in Fairfax, VA (just
outside Washington, DC, east of Dulles Airport).
Things may have seemed quiet recently after the European ME
Alliance was formed last year (see November's newsletter and press release).
But work is progressing and the group members will be meeting at the
International ME/CFS Conference in London in May. Expect more news over the
next months as this European initiative gathers pace.
(www.europeanmealliance.org)
