International ME/CFS Conference
It was our
pleasure to have Hillary Johnson as our guest in London for the Invest in ME
pre-conference presentation on CDC’s influence on ME research throughout the
world. The presentation was impressive and shocking, telling some of the inside
story of how ME has been manipulated by a government agency. This has so many
parallels to the concerted campaign to misinform which has occurred in the UK
over the years.
presentation will be available on our 2009 conference DVD but she has also added
it to her web site -
Institute for Neuro-immune Diseases was represented with Annette Whittemore
giving the conference keynote speech, showing this amazing development. Dr Dan
Peterson gave a comprehensive lecture based on his 25 years of clinical
experience and the solid research using being performed at the WPI. This was
followed by a presentation showing the dynamics and power of science by the WPI’s research director Dr Judy Mikovits. We look forward to seeing this
important work being published and validated.
Professor Garth Nicolson gave a very good
overall lecture on the role of chronic infections and complex illnesses. His
presentation was full of information to show the difficulties researchers and
clinicians are faced with when meeting this group of patients.
Professor Nyland based his lecture on two
recent epidemics in Norway. This has given researchers there a chance to do
follow up studies on the patients who have remained ill with ME like illness.
One outbreak was due to Giardia parasite and the other due to Legionella
Dr Baumgarten showed us what can be done with
public funds when politicians are supportive and patients' voice is being
listened to. The importance of defining the patient base carefully using the
Canadian consensus document was made clear and she confirmed the inadequacies of
the NICE guidelines for diagnosis.
Dr Kerr has replicated and expanded on his
previous gene expression work and he showed us his usual high quality research.
His team has looked at various infections linked with ME/CFS (EBV, parvovirus,
enterovirus, coxiella burnettii and chlamydia pneumoniae) and found among other
things that the late phase marker for EBV ( nuclear antigen IGG) varied among
patients compared to normal controls with patients having lesser levels. Dr Kerr
and his team have also looked at the possibility of developing a SNP (single
nucleotide polymorphism) based test for the genomic subtypes.
Dr Chia showed us his excellent, solid
research on enteroviruses which is confirming previous work performed in the UK.
He is concentrating his efforts in finding antiviral therapy against
enteroviruses. He has found Oxymatrine to be beneficial for about 53% of
Meirleir preceded his conference presentation with a press conference in London
on the day before (May 28, 2009) entitled “ME: End of an Era of Medical
Negation" unveiling his findings from recent research which has included
examining many patients in Norway and displayed conclusions regarding the
complex mechanisms of ME/CFS pathogenesis, a diagnostic test, and directions for
study by Professor
De Meirleir et al. has been published In
Here they observed intestinal overgrowth of Gram positive D/L lactate-producing
bacteria which are also known to produce H2S [hydrogen sulphide] in presence of
certain heavy metals as a survival defence mechanism.
We have a page showing
Professor Basant Puri’s cutting edge presentation –
A full review of the
conference will appear later –
The DVD of the conference is entering its final stages of
production and we hope to have it ready for distribution over
the next week. The DVD will include the conference presentations
and the pre-conference presentation by Hillary Johnson. The
Hooper Interviews also continue with Professor Malcolm Hooper
interviewing Dr Judy Mikovits, Dr Barbara Baumgarten and Hillary
At the IiME Conference in
May the members of the European ME Alliance held its first AGM. The Alliance now
spans eight European countries with more hopefully joining soon.
A number of initiatives
were discussed as the members take forward cooperation on ME affairs. Expect
more news over the next months as this European initiative gathers pace. (www.europeanmealliance.org)
The Enterovirus Foundation
Just a reminder
that the conference Journal of IiME (Volume 3 Issue 1) contained a fascinating
article on enteroviruses from Professor Steve Tracey of the newly formed
As we publish
this newsletter we are awaiting a reply from the Chief Medical
Officer as to whether he considers people with ME to be more at risk
from the H1N1 strain of the flu virus,
and whether Tamiflu will be immediately available if requested.
IiME have written to the CMO in order to establish the position
for people with ME so they can discuss with their GPs and overcome any
misinformed views about the
nature of ME.
have contacted us saying their GPs tell them people diagnosed with ME don’t
belong to a risk group. The reply to our letter to the Prime Minister (see
below) includes this -
Department of Health classes CFS/ME as a chronic neurological condition of
Direct website includes chronic neurological diseases among high risk groups
needing preferential treatment so anyone having problems with their GP can refer
to this letter.
We also asked
the CMO if he recommends Tamiflu antivirals or vaccination for people
with ME and we’ll inform
you if and when we get a reply.
We thought it
would be interesting to mention how the situation is for some of our colleagues
in the European ME Alliance in their respective countries.
In Belgium, a
"Flu Committee" has been established with Marc van Ranst - a virologist - as
head of this committee. Unfortunately, he is linked to the university of Leuven,
where ME is thought of as psychosomatic. In Belgium, the latest policy is to
keep the infected people who are moderately ill at home without medication.
Until recently patients were treated with viral inhibitors, but this has become
too expensive. Only the elderly, babies, the chronically ill and people with
impaired immunity (!) will receive medication. So a contradiction there.
The Belgian government treats ME as a psychosomatic illness without impaired
immunity so the fear is that pwme will not receive any medication either. The
fear is that only ME patients who are recognized as chronically ill will receive
which currently has relatively few cases, the health authorities have expressed
a wish for a nationwide vaccination programme - just in case.
Denmark has no policy regarding the vaccination of ME patients but it is left to
each and every single patients to choose for themselves if they want it or not.
Throughout the years in various ways ME-patients have been informed
risks of vaccination by the knowledgeable patient groups, so most of them will
be careful. Vaccination is a free choice in Denmark, as the law says that no
patient can be forced to accept a treatment. People with ME do not feel
comfortable with this as some feel the health authorities will certainly try
putting pressure on people and try to force them into being vaccinated. They
will not, however, force sick people to accept a vaccination.
The policy for those who contract the illness is to tell them to stay at home,
take TAMIFLU if prescribed, drink a lot, rest a lot and keep a high personal
In Spain people are concerned because Spain has the second highest number of
H1N1 cases after the UK in Europe. People with ME, are especially concerned because of hypoimmunity and are likely to be more vulnerable. There are people with ME
right now in Spain, who have all the signs of having Influenza A but are not
being tested for it because, it is thought, the health system, which already
does not want to deal with ME patients properly (there is a two and a half year
waiting list to see a ME doctor), does not want an avalanche of people with ME.
There is also a lack of leadership on this issue. No one wishes to talk about it
or deal with the issue. Doctors in Spain are hoping that pwme will not be too
severely hit, and to those who probably have it now, they advise to stay home and
rest (which is the standard response for any situation)...and see.
The following information was passed to us. The PACE Trial is a
multi-million pound CFS trial being run by Peter White,
Michael Sharpe and Trudie Chalder.The results of
this trial are expected next year.
"Protocol for the PACE trial: A randomised controlled trial
of adaptive pacing, cognitive behaviour therapy, and graded exercise as
supplements to standardised specialist medical care versus
standardised specialist medical care alone for patients with
the chronic fatigue syndrome/myalgic encephalomyelitis or
Some of the typical spin of such trials is typified by this
sort of statement :
"One of the most interesting studies, carried
out by Dr Floris P. de Lange and colleagues in the Netherlands, showed that cognitive behaviour therapy
was associated with an increase in grey matter of the brain
and this increase was associated with improved cognitive
This type of
change (accounting for only 12%), with no ME control group to compare who did
not receive these psychological therapies, could easily have happened over 8
months without a treatment, and patients could have been getting better anyway
with time. The PACE trials are funded by the Medical Research
Council. We continue to consider it
unacceptable that the major funding body in the UK
is prepared to see
world-class gene research stopped yet willingly allocates large amounts
of scarce funding to research on non-curative psychosocial strategies
designed to ‘manage’ symptoms. As the PACE trial is flawed due to non-scientific
diagnostic criteria being used, these costly and meaningless
trials are already destined to prove whatever is wished to
"Dr John Chia reported his interesting case control
study finding Coxsackie viral RNA in the stomachs of the large majority of patients with
CFS, collected over many years. The laboratory
work looked convincing, but many patients
had significant gastro-intestinal symptoms and
even signs, casting some doubt on the diagnoses
of CFS being the correct or sole diagnosis
in these patients."
It makes one wonder what signs and symptoms the PACE AND
FINE trial participants have.
It is a pity Professor White didn't take the opportunity of saying
this directly to Dr Chia by attending the recent IiME
International ME/CFS conference, right on his doorstep.
To paraphrase an old US election slogan, and also one of the
remarks in a presentation at the IiME London conference -
"it's an enterovirus, stupid!".
demonstrates that the strategy of the MRC in setting up a panel of
"experts" and which includes those who believe ME to be a
psychological illness will be a dead end for serious
science in the UK and another waste of money and time.
How is it possible to mix such entirely false views of ME
under the banner of biomedical research?
E-Petition to Prime Minister
Invest in ME responded to the recent response from the Prime
Minister's office to the e-petition -
It is our regret
that we have to show the wretched response to our request from the Department of
Health (our original letter having been moved from the Prime Minister’s office
to the DoH without comment).
The reply (see
here) ignores the questions posed by our letter, repeats many of the
template answers so favoured by the Department of Health in their answers to
people with ME and their families, and provides no hope of
any change by this department, or this government. Our request to meet with the
Prime Minister was not even considered by Mr Brown, the answer being apparently
delegated to a customer services contact in the Department of Health!
We shall be
responding to the Prime Minister shortly.
Response from CMO to 12th May Appeal
We have already
criticised the Chief Medical Officer and the government for facilitating
antivirals provision for people contracting the H1N1 flu virus yet
refusing to advocate a similar approach for people with ME, where biomedical
research using antivirals has shown that some patients in sub groups of ME
However, the CMO
has offered IiME the opportunity to discuss ME with his policy unit. We hope to
effect this opportunity in the near future.
Fundraising for IiME
Now that we have
completed the conference and DVD it is our intention to make progress on
raising funds for biomedical research which will enable examinations and a WPI-equivalent centre to be established in the UK. Our Biomedical Research Fund
will be used for this.
Some of our friends and supporters are organising events to help us.
Cycle Ride from London to Lands End
Rob, Dom and Si
cycle from London to Lands End.
are going to cycle the 300 miles from London to Cornwall on the Sunday 26th July
and (hopefully) arrive in Lands End by Saturday 1st August.
money raised will go to Invest in ME, a charity that aims to raise awareness and
recognition of the disease, funding research that will bring eventual diagnosis
friend of Rob's from school has ME and the guys are doing this to help
her and people in similar situations.
If you live along the route please give them
If you make a donation, don't forget to check the Gift Aid box if you're a UK
taxpayer as then your charity can claim an extra 28% from the government!
Thank you for
any support you give to these fundraising efforts.
Whittemore-Peterson Institute is holding its annual fundraising gala on Saturday
The 5th Annual I Hope You Dance Gala Benefit
for The Whittemore Peterson Institute for Neuro-Immune Disease will be held on
Saturday, September 12, 2009 at the Peppermill Resort Casino in Reno, NV. Ticket
sales for the event will begin August 10.