Welcome to the
Invest in ME Newsletter for October 2009
IN THIS ISSUE
The Proof is Out There - Part III
Lerner - EIPS
Response from CMO
Petition Against CDC Empiric Criteria
THE PROOF IS OUT THERE -
The news we had been awaiting since May was finally
announced. The research on a novel virus to which Dr. Judy Mikovits alluded
at 4th Invest in ME International ME/CFS Conference in May, in answer to a
question from Hillary Johnson, has been published by
The researchers at the Whittemore-Peterson Institute
(WPI), together with the Cleveland Clinic and the National Cancer
Institute have reported that 67% of 101 ME patients tested
positive for infection with xenobiotic murine retrovirus (XMRV), a
gammaretrovirus associated with a subset of prostate cancer. Only 3.7%
of 218 healthy subjects tested were positive for the virus.
People with CFS are 54 times more
likely to be infected with XMRV than your average person on the street -
The implications here that
indeed an infectious illness could be far reaching.
Yet the US Centres
for Disease Control (CDC) knew of the possible retrovirus link back in
1991 when Elaine De Freitas presented research on this. The CDC failed
to act - much as the UK MRC have failed to act in all the years despite
the scandal of suffering being caused to tens of thousands of severely
Predictably some of those who continue to portray the
illness as a somatoform condition have immediately tried to diminish the
research - an obvious sign that those vested interests which have
dominated research funding from the MRC for so long are worried that
their cash cow is about to be culled by good science.
More details -
Statement by Invest
in ME on the WPI research -
Johnson's view of this news -
It was good to learn at the IiME conference in London that the WPI's Dr
Mikovits and Dr Jonathan Kerr were working together and had been awarded
a $1.6 million grant by the National Institute of Allergy And Infectious
Diseases. This grant spans 5 years and will provide critical support for
the ongoing research into the causes and diagnosis of neuro-immune
It is immensely encouraging to know that one of our key requirements,
namely international collaboration on biomedical research into ME, is
thriving - more reason to direct fundraising to such programmes as those
of the WPI and Dr Kerr. IiME's Biomedical Research Fund is aimed at
assisting in this area also.
How ironic that the UK's leading ME researcher should have to find
funding from the USA when the UK's supposedly independent MRC has so
consistently failed to provide anything.
Invest in ME are UK distributors
of the Canadian Guidelines Consensus document. We provide these booklets
to organisations and individuals in the UK and to other charities and
organisations such as the Grace Charity, Brame, MEA and Forget-ME-Nots.
We have also supplied them to other countries in Europe - Ireland,
Sweden, Germany and Belgium.
IiME provide these on a not-for-profit basis - 80p
per copy plus postage and packaging. To order the Guidelines
Martin Lerner - Energy Index Point Score
Dr Martin Lerner is now treating a number of UK
patients on antiviral medicines - apparently supported by their medical
Dr Lerner's Energy Index Point Score (EIPS TM) is
now a fully registered U.S. trademark. It is freely useable and
may be referred to as "Reg. US Pat. Off." or " Reg. U.S. Pat and Tm
the EIPS here.
Response from CMO
As we reported
in our September newsletter Invest in ME have written again to the CMO regarding
H1N1 influenza virus and the development of a vaccine. The reply mixes ME and
chronic fatigue. It didn't answer our questions on the differences between the
information on the CMO and the DoH web pages.
We mentioned in
our September Newsletter Supplement that we were involved in
some new projects.
International ME/CFS Conference 2010
Our fifth Invest in ME International ME/CFS Conference is scheduled
for central London in May 2010. We hope to bring more details shortly.
Two other projects concern
films relating to ME.
Film on ME
One of these films is a feature-length documentary about ME and the
struggle to get the illness recognised by the medical profession. This
film is aimed at showing the way ME has been treated, both in the UK and
For this the film producers would like to find people with ME who
would be willing to be interviewed with a view to being included in this
Although all stories are welcome of special interest would be those
who contracted the illness in the 1980s, those who have been
misdiagnosed or were treated with CBT and/or GET and got worse because
The film makers are especially looking for intriguing and
interesting stories that convey the devastation of ME or where promising
careers have been affected by this illness.
We are hoping to receive stories not just from the UK but from Europe
also and we hope the contacts within our European ME Alliance
may help us.
All details received will be treated confidentially and only passed
to the film researchers, who will then be in contact with those who have
offered their participation.
Invest in ME will acknowledge all receipt of stories from those
If you are interested in contributing please contact us at -
Invest in ME
PO Box 561
Eastleigh SO50 0GQ
or email us
here at IiME. Include
Name, Email address (if applicable), Postal Address and Contact
telephone Number (if possible). Also required are Year contracted ME,
Year ME diagnosed, who and how diagnosed and any further information about your
story (initially a maximum of about 300 words) - perhaps detailing
life/career before becoming ill and how the illness has affected your
Invest in ME will pass this information to the film producers having
made them aware that this information is not to be shared with any other
person or organization without your permission.
As mentioned last month we are nearing the end of our current batch of
Lost Voices, having distributed the book to seventeen countries. Thanks
to donations made by supporters Lost Voices now appears in medical and
public libraries – the latest being
West Middlesex University Hospital NHS Trust.
Invest in ME have self
funded the cost and distribution of nearly 250 copies of Lost Voices to
politicians, journalists, television and radio presenters, doctors, ME
advocates, healthcare staff and to others whom we thought would help
raise awareness of ME or be instrumental in changing perception
regarding ME - the latest being a copy to be sent to the
Director of Secondary Care, DHSSPS in Ireland.
Lost Voices has been
included in study material
for courses on 'The Chronic Illness Experience' at De Paul University,
Chicago, USA, an important centre involved in ME/CFS research where
Invest in ME have offered to supply the book for free for future
Via one of our great supporters in the USA a
copy of Lost Voices has even found its way to the White House. Sadly we
also sent a copy to the Prime Minster's wife but received neither
acknowledgement of receipt nor any indication that the book had been
Lost Voices has met with
widespread appreciation from patients, carers, family, friends, doctors,
consultants, researchers and MPs concerned about the plight of
sufferers. There is clearly a need for such a book, so Invest in ME are
looking for help with funds to order a second batch of Lost Voices. We
intend to distribute the book as far and as wide as our resources allow
and we have grant applications in to try to help in this endeavour. If
we are unsuccessful in these grant applications then IiME's trustees
themselves will attempt to fund directly another batch of the books.
In the meantime an update on
the book project is a development - into a film -
'Lost Voices and the Emperor's new robes... but what has happened to his
briefly touched on the differing views of ME ranging from those
underpinned by decades of biomedical research to those derived from
outdated assumptions and supported by research based on an
unrepresentative and heterogeneous patient base. The film "Lost Voices
and the Emperor's new robes... but what has happened to his clothes?"
will continue to explore these powerful and neglected issues.
This is not a
film about living with ME, but reveals how support for psychiatric and
psychosocial perspectives and the spread of misinformation have severely
affected and even destroyed the lives of many people with a severe
'Lost voices and the Emperor's new robes... but what has happened
to his clothes?' is the working title and is being
made by the same team who undertook the original book project - an ME
patient's family with a mix of relevant skills and committed personal
involvement. The first stages of filming are already underway with
contributions from doctors, consultants, researchers, sufferers and
their families. Subsequent stages will develop this into a
well-informed, evocative and powerful film where some of the
contributors to 'Lost Voices' will be included, as well as some very
welcome new participants. Invest in ME will bring more news on this
project as it develops. The Lost Voices will continue to be heard.
Petition Against the CFS Empiric Criteria
There is still time for all
ME patients, groups and carers to sign the petition against the
CFS empiric criteria (Reeves, 2005). This is the definition
which the Centres for Diseases Control in USA have suggested be
used. The definition is rightly criticised by the ME community
as a mockery of correct science.
Anyone having listened to Hillary Johnson's
presentation in London in May on the Influence of the
CDC on ME Around the World would be left in no doubt as to the total
bias, ineptitude and flagrant corruption in the CDC with regard to the
treatment of ME.
of the CFS Advisory Committee at the end of October is planned. The CDC
will be announcing their 5-year plan and the dangers of leaving in place
this sub-standard, unscientific and flawed definition in place will lead
to further problems for people with ME and their families in the years
Invest in ME have rightly criticised the biased approach
of the UK Medical Research Council in their treatment of ME. The CDC
need to be fought in much the same way as their approach to ME has so
much in common with the MRC approach. In fact it has been stated that
Dr. Bill Reeves (head
of the CFS programme at the CDC) is in close contact with at
least one of the psychiatrists who form the part of the MRC's panel
supposedly looking at future research into ME!
Defining ME patients by using a large
heterogeneous group of with non-representative symptoms is the falsehood
allowed to be perpetrated by the MRC when wasting millions of pounds on
link to the petition is here.
The petition is open to all people - even those outside USA.
Invest in ME don't do
Christmas cards. But we do still have some copies
of Lost Voices left from the batch
which we originally commissioned and these would make ideal
Lost Voices is ideal for anyone needing to know the
reality of ME and yet also to show the commitment of carers, the
optimism and tenacity of patients who fight on in
despite the appalling situations they are left in by the health
services. Lost Voices is about hope and resilience.
The IiME conference DVDs also could
make useful presents. Every IiME conference DVD contains the conference
lectures which are easily navigated via a menu option. They can be used
by healthcare staff to claim their necessary Continuous Professional
Development (CPD) points.
If you are thinking of what to give
at Christmas then please help Invest in ME and consider Lost Voices or
Best wishes to all
Invest in ME
Registered Charity Nr. 1114035
PO BOX 561, Eastleigh SO50 0GQ, Hampshire, UK
Support ME Awareness