People who suffer from Myalgic Encephalomyelitis
(ME) are forced to live in a bubble - a bubble
formed from -
Our web page is here.
IiME have prepared leaflets which can be downloaded
(in black or white versions). We also have these
available for groups or individuals who are
interested in promoting the campaign - subject to
funds being available to cover costs.
(Why
ME Awareness MONTH - click here?)
What is happening during May? Invest in ME's efforts
for promoting awareness in May is the Burst Our
Bubble campaign, an advert in a leading London
magazine (see later), a major presentation in London
on Science,
Politics and ME and the International ME/CFS
Conference 2011 which provides a platform for the
latest biomedical research into ME from the world
leading experts. We shall also be hosting the 2011
AGM of the
European ME
Alliance.
Amongst IiME's events are the following -
London Business Matters
IiME were selected
as Charity of the Month by London Business Matters
(The official publication of the London Chamber of
Commerce and Industry) and we are making use of this
opportunity by taking out a full page advertisement
to raise awareness of ME. This will allow us to
raise awareness of ME by reaching 18,000
decision-makers in London. We hope we can gather
support for future research
and raise awareness of the lack of attention and
funding which is being given to proper research into
ME.
See this link.
Pre-Conference Evening Presentation - 19th
May
The
pre-conference evening -
Science,
Politics...and ME - will provide a platform
for raising awareness of the politics which has, and
is affecting the lives of hundreds of thousands of
patients on both sides of the Atlantic by thwarting
biomedical research. The recent PACE Trial is an
example of a flawed study which has been allowed to
be funded yet has no meaning in the real world.
This year Dr Ian Gibson will join US journalist
Hillary Johnson, author of Osler's Web. Hillary's
presentation at our pre-conference presentation of
2009 (when she spoke of the CDC and its influence
worldwide) is still available on DVD [available
on the 2009 DVD here].
This pre-conference event is full but we will
maintain a waiting list.
We hope to film this event for a subsequent DVD (see
later new item).
IIMEC6 - The 6th Invest in ME International
Conference 2011 - 20th May
Our Thanks to The Irish ME Trust - sponsors of a
speaker at the 6th Invest in ME International ME/CFS
Conference 2011.
The Irish ME Trust has again agreed to sponsor a
speaker at the Invest in ME International ME/CFS
Conference 2011. Invest in ME want to thank IMET for
their generosity which allows us to continue to
organise and host this event.
The emphasis at the IiME 2011 conference is on the
need for clinical trials into ME. Many (most)
physicians in the UK are unaware of biomedical
research into ME and of the possible treatments
which may be available. More research is required
and more clinical trials need to be organised.
ME Awareness Month draws to a close with the major
biomedical research conference in
London
focusing on clinical trials of ME. We hope this year
will be a very special and memorable occasion.
More Conference News
We hope to be able to include an additional
speaker at the conference. Keep a look-out on
the conference news page (click
here).
Our colleagues from the European ME Alliance
will again be present.
Eighteen countries are now represented at the
conference - but the Chief Medical Officer of
England will not be.
The refusal by the Chief Medical Officer in the
UK to attend yet another IiME biomedical
research conference means that the Department of
Health's main advisor is again unaware of the
differences which could be made to establish a
credible government policy toward ME. Our
question always is how much more embarrassing
can it get for the CMO?
Dame Sally Davies is the first woman to hold the
role of CMO and one could have expected a more
proactive approach to an illness which affects
the lives of so many. One of her roles is -
to provide, clear, independent and evidence based advice to the Secretary of State for Health and the Government on all matters relating to the nation's health and on clinical aspects of the National Health Service
|
We doubt this is possible with regard to ME if she
is not able to make it to a major biomedical
research conference on her doorstep.
There is still a place available for the CMO is she
changes her mind.
We have written to the chair of the APPG for ME and
offered to facilitate a meeting with MPs prior to
the IiME conference in Westminster on 20th May. IiME
have proposed a meeting and organised a venue close
to parliament for this to occur and we are awaiting
news on that meeting at this point in time. This is
IiME's attempt to allow clear and up-to-date
information on biomedical research into ME to be
presented directly to MPs who have a wish to change
the direction of research and treatment of ME.
IiME will also be able to present its proposal for
an examination and research facility to be set up in
Norfolk (see
here http://www.investinme.org/Research%20-%20ME%20Institute.htm).
The emphasis at the IiME 2011 conference is on the
need for clinical trials into ME. Many (most)
physicians in the UK are unaware of biomedical
research into ME and of the possible treatments
which may be available. More research is required
and more clinical trials need to be organised.
Journal of IiME
A conference version of the Journal of IiME will
also be published in May and will be available, for
free, via this link -
click here.
This edition has will also serve as part of each
delegate's conference pack.
Conference DVD
We hope to be able to offer the conference DVD with
a special early bird price for the month of May.
Keep a look-out on the web site for this offer. The
conference proceedings will be available together
with the pre-conference evening presentation with Dr
Ian Gibson and Hillary Johnson.
Lost Voices for a GP - 1st - 31st May
During the month of May Invest in ME will be further
subsidising our Lost Voices book by offering it for
just £5 (UK, prices different for outside UK) when
purchased for a healthcare professional or
department. The idea is to allow healthcare
professionals to be aware of the effects of severe
ME as well as read of the facts about ME from
Professor Leonard Jason, Annette Whittemore, Dr John
Chia and others. IiME have previously distributed
copies to medical libraries thanks to the efforts of
our supporters.
The new price of the sponsor a book appeal will be
set during May
via this link and IiME will arrange for the book
to be sent direct to the healthcare professional or
department concerned with details of where it came
from, if desired.
Letter to The RCPCH
The Royal College of Paediatrics and Child Health
recently had published its submission to the NICE
Guidelines for ME Review. In this submission it perhaps
showed its true colours by including the statement that
"Regarding the epidemiology of chronic fatigue syndrome:
as a psychological illness with physical
manifestations".
Invest in ME challenged the chairman of the RCPCH by
writing a letter to him (see
http://www.investinme.org/IIME%20Letter%202011-04%20RCPCH.htm).
The RCPCH finally rescinded their statement where they
stated they
"....have reviewed our submission to the NICE
consultation and can confirm this comment was from
one individual who assisted in our response. As such
it does not represent RCPCH policy, and in
retrospect should not have been included. The phrase
"as a psychological illness with physical
manifestations" was unhelpful... reassure you RCPCH
continues to view this condition as a biological
illness" -Dr David Vickers
We are glad that following this letter the RCPCH have
publicly stated that the erroneous statement was an
error and that they have retracted this. It remains to
be seen if the person(s) responsible for this erroneous
statement are prevented from spreading this
misinformation among their colleagues.
Letter to The Lancet
The Editor of the Lancet recently
participated in an Australian radio
broadcast which included proponents of the
PACE Trials. The comments by Dr. Richard
Horton indicate a lack of knowledge about
this disease and about the biomedical
research which has taken place and is
continuing, even though it receives none of
the funding which psychiatrists have
received to promote their flawed research.
Invest in ME therefore invited Dr Horton to
the IIMEC6 conference on 20th May as our
guest -
http://www.investinme.org/IIME%20Letter%202011-04%20Lancet.htm
Dr Horton has since declined the offer as he
is in attending another conference. So
Invest in ME have offered a place to any
editor of the Lancet so that they may be
appraised of the biomedical research into ME
and may then be in a position to report
accurately on ME in the future.
Ignorance is not an option.
"Grey" Information
About ME/CFS
These recent events illustrate how establishment
organisations are unable to adapt and accept the current
knowledge regarding ME.
Much of this is due to the biased policies of the MRC aided
by misinformation being presented to the media and to
ministers.
Margaret Williams has produced the first part of a new
article on how the media is being manipulated -
click here -
http://www.investinme.org/Article422%20Grey%20Information%20about%20ME%20CFS.htm
"There is a wealth of important information about ME/CFS in
the grey literature that has been largely ignored by those
intent on denying the existence of ME/CFS as an organic
disorder. Indeed, the UK NHS Policy Plus Guidance
"Occupational Aspects of the Management of Chronic Fatigue
Syndrome: a National Guideline" (2006/273539 / DH
Publications) with which the three Principal Investigators
of the PACE Trial (Professors Peter White, Michael Sharpe
and Trudie Chalder) were involved states that the grey
literature on "CFS" was not comprehensively searched in the
preparation of that national guideline."
"Why are the UK patients' support charities not vigorously
refuting the false reasoning of the Wessely School about
ME/CFS on every possible occasion instead of colluding with
it?"
Responses from ME organisations have ranged from
justifiable criticism through to support for the PACE
Trial and even silence from some. We hope that the
carrot of MRC research funding has not created this
silence regarding the PACE Trial which would be a
dangerous and short-sighted approach given the history
of MRC policy toward ME.
Buying silence in this way might well be one of the
objectives of the somatoform lobby.
The reporting of the flawed and bogus science of the PACE
Trial is indicative of the misinformation which has been
allowed to occur.
As Margaret Williams commented in another article -
"People genuinely cannot understand how individuals who
profess to be speaking up for the primacy of science can
defend, let alone promote, such a transparently flawed study
as the PACE Trial."
Irish Blood Ban
The Irish Blood Services have banned blood donations from
people with ME.
The Irish ban actually came into force on 9th August 2010,
which pre-dates the UK ban in November 2010.
European ME Alliance
(EMEA)
member IMET had sent a letter to the Irish CMO in October
2009 and there was an EMEA letter dispatched to the then
Minister for Health Mary Harney in April 2010. No replies to
these letters were forthcoming.
Here is the statement from the Irish blood services
..you cannot give blood if you currently have
Chronic Fatigue Syndrome (CFS) or if you have
had it in the past. CFS is also knows as M.E.
(Myalgic Encephalomyelitis) and Post Viral
Fatigue Syndrome.
Prior to early August 2010 donors who had a
history of CFS/ME could give blood, provided
that they had completely recovered and were
feeling well.
On
9th August 2010, we introduced a permanent
exclusion for donors who have ever had CFS/ME
even if they had fully recovered. We changed the
guidelines because:
Donor Safety:
CFS/ME is a condition where people can relapse
and become ill again. We were concerned that
there was a theoretical risk (i.e. a very small
risk) that donating blood could make symptoms
worse or provoke a relapse.
Recipient
Safety: Scientists have recently
identified a possible link between CFS/ME and a
virus called XMRV. A lot of research is being
done in this area at present, and the results
are conflicting. Some studies have found no link
between CFS/ME and XMRV. Even if further
research proves that there is a definite link
between CFS/ME and XMRV, this does not mean that
the virus causes the disease. Despite the fact
that the link has not been proven, we took the
decision to change our guidelines, as a
precautionary measure, to protect blood
recipients (i.e. patients who receive blood)
until more is known about XMRV. We will keep
abreast of developments in this area and will
review our guidelines if further data become
available. |
Unlike the UK authorities the Irish have stated what
people with ME and their families have known all along -
that a ban is to protect recipient.