Reflections - 5th
IiME International ME/CFS Conference 2010
With fourteen countries
represented at the conference the 5th Invest in ME International ME/CFS
Conference brought together researchers, clinicians, journalists, patients,
support groups and even film crews.
IiME also self-funded
places for some media persons and some researchers and offered places to others
in order to improve knowledge of ME. Unfortunately the editor of the British
Medical Journal, despite numerous emails inviting her to come and assurances
that the BMJ would be represented at the conference, nevertheless left it to
nine hours before the conference start to inform us that she would not be
attending. The fact that the BMJ could not find one person to attend this major
conference makes it impossible for the BMJ editorial staff ever to comment on
the subject of ME and be taken seriously. They have failed to show themselves as
impartial or even scientific and, like many of the establishment organisations,
can be seen to have no intention of trying to promote proper science in relation
to this disease.
With hindsight the BMJ's
tunnel vision was predictable. But there are many more positives from the
conference to make up for establishment apathy. One of the attendees at the
conference, Dr. Martin Scurr, is a GP and also write a column in the Daily Mail
entitled "Ask the Doctor". After the conference Dr. Scurr wrote in his column of
7th June the following -
"I admit it, I was wrong. For
many years, I - like many of my medical colleagues - have blamed ME on
psychological or behavioural causes. Then, last month, I attended the 5th
(Invest in ME) World Conference on ME/CFS (myalgic encephalomyelitis/chronic
fatigue syndrome)."
For a doctor and a national newspaper to admit they have been wrong demonstrates
the conferences are having an effect. As we have maintained all the
while education about the illness is the surest way to defeat the vested
interests who have much to lose or who make a living out of the misinformation
about ME. The online article by Dr. Scurr is available -
click here.
The American Journal of Biochemistry and Biotechnology invited all of the Invest
in ME 2010 conference speakers to submit their papers for publication. The first
one by Professor Leonard Jason is now available online. We are pleased to see
this paper on a revised Canadian Definition published for the wider audience -
click here. [also
http://www.investinme.org/IiME%20AJBB%20Conference.htm].
The 2010 conference DVD has
already been distributed to twenty countries around the world. A new feature for
this year's conference DVD was a pre-conference "brainstorming" session with
some of the speakers at the conference.
The DVD may be ordered via this link -
click here.
The Journal of IiME Issue 4 Vol. 1 was published at the conference and hard
copies are still available for sale - £3 plus p&p. It is also available for free
online via this link -
click here.
Conference Review Page
-
click here.
Invest in ME and
WPI UK Studies
The IiME funded WPI UK studies are ongoing and blood draws have been taking
place. An IiME cohort of ME patients is included in these studies and we will
bring news of the results from the WPI as soon as possible. More blood draws
will be taking place in August
(click
here).
Invest in ME - A
Centre of Excellence for ME
At the 2010 conference our
intention to discuss the setup of a centre for ME was mentioned. In the last few
months we have been discussing the establishment of a facility which would allow
correct examination of people using the best guidelines possible (the Canadian
Consensus Criteria) and perform translational biomedical research into ME.
We have details of the proposal -
click here.
Fundraising for
Invest in ME
We still have wristbands for sale to help raise awareness and fund biomedical
research -
click here.
We would like to thank our fantastic supporters for the donations, the
fund-raising efforts, the E-Bay sales and for the support which you provide and
which allow us to continue to provide better education about this illness. Our
fund-raising page is here -
click here.
CMO Reply
We received the following
(click
here)
reply from the CMO regarding our letter prior to the conference in May
(click
here).
The positives from this are
-
-
that, again, the government recognises ME
as a neurological illness and healthcare professionals must recognise it as
such
-
that the NICE guidelines are only
guidelines and do not replace the knowledge and skills of individual health
professionals who treat patients
-
that individual health professionals
may make their own decisions about their patients - and do not have to
follow NICE
-
that health professionals retain their
independence to apply their clinical judgement in deciding which guidelines
to use for the diagnosis and treatment of their patients.
The CMO states that, in the
UK, people with diagnosed CFS/ME are excluded from donating blood while they are
"unwell" and "have symptoms" - an exclusion designed to protect the health of
the donor.
Our question on definitions
of "recovered" and "feeling well" are ignored.
The UK Blood Services
Standing Advisory Committee for Transfusion Transmitted Infections decided it
was premature to make any change to the above in regard to the XMRV retrovirus
(despite Australia, Canada and New Zealand banning outright blood donations),
but that the situation would be closely monitored as new evidence became
available from the UK and from Europe. Hopefully the WPI/IiME UK studies may
help focus minds.
BACME
Invest in ME were recently
invited to apply to join BACME - the British Association for Chronic Fatigue
Syndrome/ME.
After consideration of this
invitation and looking at the constitution of BACME Invest in ME have decided
not to apply to join. Our reasons are that to apply to become an executive
member one has to join in accordance with the terms of the BACME constitution,
which states -
One of
the objectives is to support the delivery of services and to enable services to
maintain standards of care in the treatment of CFS/ME as set out in the NICE
guidelines.
Invest in ME reject the current NICE
guidelines as having little value for treating this illness. This alone mandates
us to decline any membership invitation. The organization is chaired by
consultant paediatrician Dr Esther Crawley, the medical advisor for AYME and
whom we have no faith in to treat ME in the way it needs to be treated and who
has been given funding to perform clinical trials using children on LP, a so
called training program that encourages participants to be untruthful about
their feelings and symptoms. The people running this organisation also, in our
opinion, have no role in treating or commenting on people with ME, their
treatments or any research which would lead to progress in providing treatments
and cures.
We believe the basic foundation of
this organisation is flawed and we will not compromise on our view that the only
way to treat and cure ME is via a strategy of coordinated biomedical research -
not psychiatric therapies and certainly not hyped-up businesses which contain no
medical knowledge.
Our statement is available here -
click here.
Of Interest
Some links which may be of
interest -
Inflammation is known to be associated with ME. An interesting article about
inflammation is available -
click here.
Another
article on inflammation and cognitive decline in autoimmune diseases -
click here.
More XMRV
If one believed that
progress would be made on further understanding the causality of ME after the
Science magazine publication of the WPI/NCI/CC research (which associated the
XMRV retrovirus with ME) then there would have been continual disappointment
with subsequent establishment attempts to negate the research and with the
behaviour of certain parties in trying to downplay the significance.
Meanwhile the CDC in USA has published its negative XMRV findings whilst another
US government agency, the FDA/NIH, has seemingly confirmed the WPI findings.
Whilst we await for the FDA/NIH study to be published, there are rumours that
efforts have been made to stop the FDA study from being published due to
it positive findings. As reported in Nature News on 2 July
[http://www.nature.com/news/2010/100702/full/news.2010.332.html]
"A key study on chronic fatigue syndrome was delayed from publication after
officials from the Centers for Disease Control and Prevention (CDC) in Atlanta,
Georgia, learned of a conflicting report published by other government
agencies."
This controversy has created headlines in major science publications and even
scientists are now accusing the establishment of a cover-up.
The lay ME/CFS patient community is very knowledgeable about the research being
carried out into their disease and is keeping a close eye on these developments.
It has also caught the attention of science publications and journalists who
have finally shown an interest in the policy based evidence making which is so
evident when it comes to ME/CFS research. The story is being followed by Amy
Dockser Marcus from The Wall Street Journal
[http://blogs.wsj.com/health/2010/07/01/cdc-teams-xmrv-chronic-fatigue-syndrome-paper-is-out/].
Amy contacted IiME in June to discuss XMRV and ME. It's also worthwhile looking
at Hillary Johnson: Osler's Web
(http://www.oslersweb.com/blog.htm?post=718351
5)
and Mindy Kitei, freelance science reporter at
http://www.cfscentral.com.
The WPI/NCI/CC research in
Science from last October may not have resolved causality of ME. However, the
genie is out of the bottle. As the saying goes -
All truth passes through
three stages. First, it is ridiculed. Second, it is violently opposed. Third, it
is accepted as being self-evident.
News from the European ME Alliance
Another
biomedical research conference is taking place
in Dortmund on 25-26th September - organised by
our fellow European ME Alliance member Fatigatio.
Spread over one and a half days the conference
includes Dr Judy Mikovits, Dr Barbara Baumgarten
as well as others from Germany and Italy. More
details of the conference may be found from
Fatigatio's web site at www.fatigatio.de or via
emailing info@fatigatio.de.
Best Wishes
Invest in ME
(follow us
on Facebook -
click here)
