IN THIS ISSUE
IiME International ME Conference
ME As NOTIFIABLE ILLNESS – Letter to UK CMO
XMRV Research – A Landmark for ME
And the Parallel Worlds
CFSAC Meeting in Washington
CBT and GET
Martin Lerner Statement
ME & My MP
For Our Supporters
We would like to send a message to all those who have helped
us recently and in the past. We are grateful for the help
and advice provided by both patients and healthcare
professionals when trying to help those who have contacted
us in serious situations. We also would like to thank those
who have made, or continue to make donations to Invest in
ME. The support we receive, from all parts of the UK, and
even from other countries, makes it worthwhile continuing.
There are many names there for us to thank - we hope you
realise how much we appreciate your support. Thank you.
5th Invest in ME International
ME/CFS Conference 2010
The Invest in ME 2010 biomedical research conference is set
for 24th May 2010 in Westminster, London. This will be our
fifth international biomedical research conference and it
could not come at a better time for people with ME and their
The outstanding XMRV research from the Whittemore-Peterson
Institute and their colleagues from the National Cancer
Institute and the Cleveland Clinic means that ME is now
centre stage and it is an opportune time to get healthcare
staff to come to the conference and listen to the latest
research and news. With more researchers now prepared to
enter this field we feel this could be the most useful
In order to convey that significance we have invited Sir
Liam Donaldson, the Chief Medical Officer of the UK, to open
the conference. This will be the fifth time we have invited
the CMO and the third time he has been invited to open our
conference. As with many other areas the XMRV research has
opened up this possibility for increasing the awareness of
the severity of this illness.
Look out for more news of the conference as we build up the
conference web site -
ME AS NOTIFIABLE ILLNESS - Letter TO the UK
We have set up a new page containing a few of our letters to
the CMO (click
Our latest letter asks the CMO to consider making ME a
notifiable illness, not just at schools as we have requested
before, but for the entire general population. We do this
not to gather statistics but because the recent XMRV
research has possibly serious implications for the public as
an infectious disease and as a health risk.
Our letter, sent on 26th October, has suggested that
the XMRV research now means that the general population
needs to be protected against the consequences of this
virus and the CMO must now make ME his personal
XMRV Research - A Landmark for ME
Some years ago those suffering from diabetes and Multiple
Sclerosis (MS) were denigrated and trivialised by the same
type of establishment corruption which has been directed
toward ME sufferers. Both diabetes and MS were illnesses
which were regarded as psychiatric until insulin and MRI
were discovered. The ability of an MRI scan to show the
pathology of MS destroyed the psychiatrists who wished to
portray that illness as "women's hysteria".
The discovery by the Whittemore-Peterson, the National
Cancer Institute and the Cleveland Clinic researchers of
xenotropic murine leukemia virus-related virus (XMRV) in ME
patients may well be the equivalent defining moment for ME.
As our letter to
the CMO in 2006
stated - "although there is much to learn about the details
of these illnesses our present understanding and treatments
have emerged from careful research studies that have exposed
the inadequacies of the psychiatric models".
The WPI has tested more samples since submitting the first
paper and our
EMEA colleagues report of the interest around Europe in
studying this. One Swedish clinical virologist has described
this research as important as the discovery of HIV and
already there are plans for studying this in Swedish ME
The news of the XMRV research is really encouraging in
bringing ME into the main stream media coverage and getting
new researchers interested in the field, and wanting to
reproduce the results. This is exactly what ME needs - to be
perceived and treated as a mainstream organic illness
needing funding to provide correct treatments.
Although the discovery is quite serious, as it is a
retrovirus and therefore has its own consequences, we feel
it is better in the long term for patients to know what is
wrong with them rather than continually being left in limbo
due to ignorance and outdated information.
Researchers will now have to study the XMRV virus, how it
behaves etc. and it is necessary for governments and
healthcare organisations to treat ME with the urgency it
requires. We now have another biomarker which, of course,
needs to be verified by other researchers first before we
can be absolutely certain of its importance. There are bound
to be people in support groups who have different reasons
for their illness and we need biomarkers to make sure a
diagnosis given is a correct one.
The WPI website states:
"We have detected the retroviral infection XMRV is greater
than 95% of the more than 200 ME/CFS, Fibromyalgia, Atypical
MS patients tested. The current working hypothesis is that
XMRV infection of B, T, NK and other cells of the innate
immune response causes the chronic inflammation and immune
deficiency resulting in an inability to mount an effective
immune response to opportunistic infections."
Interestingly, in a discussion after this year's IiME
Pre-Conference Dinner presentation by Hillary Johnson,
Professor Harald Nyland mentioned how some diseases need two
viruses for a disease to develop. He also mentioned
Burkitt's lymphoma as an example where the presence of two
viruses, EBV and malaria is needed.
The elapsed time taken by Science magazine in publishing the
research findings may be seen as proof of the excellence of
the work being performed by the team of researchers at the
WPI, the NCI and the Cleveland Clinic.
There have been comments about Lombardi et al. not giving
demographic details of the patients and controls used in the
recently published XMRV study. Scientific journals have all
their own rules governing the format in which they want
research articles written. This XMRV study has been written
according to the rules given by the Science magazine and all
other interested researchers can request more detailed
information on methodology etc. if they wish.
For Science to publish an article on ME is a landmark itself
and has a huge positive effect on all biomedical ME
research. Having the National Cancer Institute and the
Cleveland Clinic working with the WPI and publishing these
results, in a journal of the calibre of Science, is as good
as it gets. This work should open up more funding
opportunities for other existing biomedical ME researchers.
If the WPI and subsequent research does not conclusively
prove that XMRV is the cause of ME it will at least have
interested more researchers to participate in biomedical
research in this area. And will have broken the mould.
We should all take this opportunity to make a real push for
funding for more biomedical studies based on homogenous well
defined patient groups. IiME will continue to campaign for
biomedical research, and apply for grants for biomedical
research, in the sure knowledge that good science eventually
will win through.
Our view on the XMRV research is echoed by the words of
Professor Martin Pall, a speaker at our 2007 conference -
"There have been comments in the media to the
effect that this finally shows that CFS/ME is
physiological, not psychological. This is true,
but this should have been obviously true anyway,
at least six or seven years ago. Nevertheless
the media coverage of CFS/ME obtained by
Mikovits and her colleagues must be viewed as a
true gift to those interested in extending
public knowledge of this disease."
The discovery of XMRV in ME patients has changed the ME/CFS
landscape for good.
We have more detail on the XMRV research -
Our statement on the research was
And The PARALLEL WORLDS...
We disagree with those who seem to wish to downplay the WPI
research on XMRV.
The status quo regarding ME is unacceptable. It benefits
only those who make a living out of inactivity or only slow
progress. It benefits those who wish to maintain the myth of
ME being poorly understood.
In order to illustrate why we need to alter direction from
the past and discard those who will not change, we only have
to revisit the UK Medical Research Council policy on ME -
with yet another reincarnation of an ME expert panel due to
convene in a workshop to discuss research requirements in
November, after a two year gestation period (ironically, the
same amount of time that it has taken the WPI to achieve
previous newsletters we have criticised the MRC policies
toward ME over the last decade and lambasted their lack of
significant progress since discussing the set up of the
latest panel of "experts" to look at research strategies for
We mentioned that the guidelines to define ME for this panel
were not specified and that this would have a dramatic
effect on any research chosen to be funded. We also
questioned the peer reviewing system which would endorse
research proposals - a major failing of the MRC policy on ME
in the past.
Now there are rumours that those who see ME as a somatoform
condition and who sit on the MRC panel may be considering
performing research on XMRV, and in all likelihood will be
using the flawed diagnostic criteria of the PACE trials to
determine cohorts of patients which would include
heterogeneous groups - an action which would totally skew
This, of course, has been the problem with MRC research over
the last generation. The forces within the MRC panel who
wish to treat ME as somatoform illness and eliminate ME from
the WHO ICD-10 G93.3 category as a neurological illness,
will not wish to change things.
Invest in ME called on the MRC and the government to
acknowledge the XMRV research and implement a strategy
of funding for biomedical research (as most know we
facilitated invitations to the MRC and the DoH and the CMO
to visit the WPI at our 2008 IiME International conference
in London - all declined or unanswered).
We would like the MRC to remove from the current panel those
who have a track-record of researching ME as a somatoform
illness, and re-establish it with those who are able and
willing to perform biomedical research in the light of the
news from the WPI.
The involvement of the ME community on the panel
should similarly be changed to be more representative of
those viewing ME as an organic illness. Certainly the
workings of any future MRC initiatives with ME should be
made totally transparent.
Close cooperation on future research should be performed
with the WPI. Funding should be made available to establish
a strategy of biomedical research into ME.
This is now a time for bold moves by the government, by the
MRC and by the CMO.
There is no more need for a so called "balanced approach".
An unequivocal change in emphasis must now be made by the
MRC toward a policy of biomedical research. The MRC must be
forced to change their policies and perform the role it
publicises for itself with its four stated strategic aims
research that delivers: Setting research priorities which
are most likely to deliver improved health outcomes.
to people: Bringing the benefits of excellent research to
all sections of society.
global: Accelerating progress in international health
Supporting scientists: Sustaining a robust and flourishing
environment for world-class medical research.
Let's hope that the new wave of interest in biomedical
research which the WPI research has generated will be to the
benefit of all genuine biomedical researchers carrying out
valuable work in the field of ME.
We hope to increase our Biomedical Research Fund by stepping
up our grant applications in an attempt to help
organisations such as WPI and the European ME Alliance and
others in UK and Europe who wish to perform serious
biomedical research. The fund is
We will attempt to implement other projects relating to
severe ME. We invite people to support us in these ventures.
The "Can Do" attitude shown by the WPI is the way forward.
CFS Advisory Committee Meeting Washington
The USA CFS Advisory Committee (CFSAC) -which provides
advice and recommendations to the Secretary of Health and
Human Services on issues related to ME/CFS, held a two day
hearing in Washington on 29-30 October and much of it was
related to the newly discovered human retrovirus XMRV. The
proceedings can be viewed - (here
for Day 1) and (here
for Day 2).
Among those presenting were Dr Daniel Peterson and Mrs
Annette Whittemore from the WPI. The Centres for Disease
Control (CDC)'s research policy on ME/CFS was widely
condemned and this, by default, also condemns the past UK
Medical Research Council policies, as those influencing UK
policy on ME have been working in close collaboration with
With widespread concern about the XMRV retrovirus and the
implications for the general population the CFSAC hearings
in Washington produced the following statement from the
Department of Health and Human Services (HHS) -
Xenotropic Murine LeukemiaVirus-Related Virus
Blood Safety and Availability
Office of Public Health and Science
Department of Health and Human Services (HHS)
Jerry A. Holmberg, PhD, SBB
October 30, 2009
The Office of Public Health and Science's Blood
Safety and Availability is aware of the recent
literature suggesting linkage of chronic fatigue
syndrome to a possible contagious rodent
retrovirus, XMRV. XMRV has also been associated
with an aggressive form of prostate cancer.
Antibodies against the virus have been detected
in 3.7% of healthy controls in a study of a
small number of individuals. Currently there is
no commercially available test for infection
with XMRV. While there is no known association
of CFS or prostate cancer with history of
transfusion, the finding that the virus is
associated with white blood cells has led some
to question whether XMRV could be transmitted by
transfusion and might therefore pose a threat to
the health of blood recipients and potentially
also transplant recipients.
The HHS Blood Safety Committee works with all
the PHS agencies (i.e., CDC, FDA, HRSA, and NIH)
to ensure the safety and availability of blood
products as well as transplantation safety.
Under the leadership of that committee, steps
are being taken to investigate the blood safety
threat from XMRV and the potentially protective
role of white cell removal, which is performed
on approximately 70% of blood. An interagency
Emerging Infectious Diseases working group that
reports to the Blood Safety Committee is
currently assessing the literature on XMRV,
conducting meetings with experts on this
retrovirus, and interacting with groups that
could study the question of blood safety. A
report is expected within several weeks. In
particular, the National Heart Lung and Blood
Institute Retrovirus Epidemiology Donor Study-II
(REDS-II) investigators are aware of the report
in Science and are assessing the prevalence of
XMRV in blood donors to determine whether
studies aimed at evaluating
transfusion-transmission rate are warranted
using NHLBI's repositories of donor and
recipient blood samples.
HHS will remain vigilant in assessing the safety
of the blood supply and developing interventions
The CFSAC hearings demonstrated the need for change in
establishment organisations. As with the flawed MRC policies
in the UK the USA also has its problems with the failings of
the CDC clearly on show for all to see.
The prime responsibility for these failings was placed
firmly at the door of the leader of CFS research at the CDC
- Dr William Reeves. The underwhelming comments of Dr.
Reeves after the WPI research was published (see
New York Times) in which he stated that "My
expectation is that we will not (confirm finding XMRV in ME
patients)." show not only
the contempt for people with ME that is well known in the UK
but also the intransigence which has dominated CDC policies
on ME for a generation.
The CDC policies toward ME are now long overdue for a
Dr. Reeves' tenure in charge of CDC policy on ME must surely
now be quickly brought to a close.
ME Story - Misdiagnosis/Missed Diagnoses
and missed diagnoses are the end products of a system which
has failed to tackle this illness.
This story from Christine Wrightson is testament to the
failings of a generation of policy-based evidence making
from the UK government and the MRC.
For the full story
Christine has requested a Public Enquiry/Full Medical review
into why hypopituitarism/secondary hypoadrenalism (pituitary
disease) is not recognised and properly researched. She has
sent her story to all MPs in order to make them aware of the
dangers of misdiagnosis and also of the seriousness of this
CBT and GET
With the flawed and wasteful PACE trials to be published
next year we would like to publicise the paper by Frank
Twisk and Dr Michael Maes who have written two excellent
articles refuting the benefits of CBT and GET for ME
A review on Cognitive Behavioural
Therapy (CBT) and Graded Exercise Therapy (GET) in Myalgic
Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS):
CBT/GET is not only ineffective and not evidence-based but
also potentially harmful for many patients with ME/CFS -
The Belgian government has evaluated the outcome of treating
ME patients with CBT/GET and concluded that they yield no
significant improvement for people with ME and cannot be
considered to be curative therapies -
Martin Lerner - CALL to ACTION STATEMENT
Amongst all the XMRV news Dr Martin Lerner issued a press
statement - a
call to action for use of a common language in CFS
evaluation and treatment.
We remind people with ME how Martin Lerner recommended in
his 2008 Invest in ME Conference lecture how patients should
not exercise until they have reached level 7 on this EIPS
scale - click here.
See the statement here.
Just a reminder that the film project on ME (a
feature-length documentary about ME and the struggle to get
the illness recognised by the medical profession) still
needs to hear of patients who would like to provide their
If you are interested in contributing please see our October
newsletter for details -
our European ME Alliance colleagues in Spain we have news of
another film about ME. The film is on tour right now
in Spain and is filling auditoriums with 300 people at a
time and provoking discussion.
Amapola y los aviones: Docuemental sobre el Síndrome de la
Fatiga Crónica, is from Dziga Productions, a small
Spanish film production company. This
Spanish-language documentary on the voices of people who
live with ME includes two men and two women with ME, who
speak from their hearts about their interrupted lives, of
their past, their hopes, their losses, their anger and their
For Alfonso, a former construction worker,
every word he utters in the documentary, is an effort: "My
two daughters don't understand why I am so sick. They want
to know when I will get better. But if things don't change
much, the day I got sick was the day I died".
Two doctors specialising in ME also appear
in this documentary, sharing their thoughts. Argentinean-Spanish
Dr Pablo Arnold says that the ME patient is like a
lighthouse, always there, silently putting in evidence all
that is wrong with our society. "That is why everyone,
administrations, doctors, everyone, tries to get the person
with ME out of the way".
Dr Nancy Klimas, with the help of subtitles,
shares some of her thoughts in this documentary: "Yes,
people with this illness are suffering a lot. But this
society does not pay attention to suffering".
Read more on the Spanish site at
Also in Spain Eva Caballé, a woman living with MCS in
Barcelona, Spain, has just published a book about her
ME and My MP
We have written again to the main political parties to tease
out their policies toward ME and we invite people to send in
their replies from MPs to their questions.
We have written to the Secretary of State for Health
requesting a meeting with him along with a representation
from the ME community which Invest in ME will organise. Only
a direct meeting with the health minister himself will
suffice due to the urgency and significance of the XMRV
With the XMRV research news it is also important to gauge
the intentions of the main political parties in the run up
to the election.
We have asked the following questions of each party
The ME & My MP Election page is