The ME CONFERENCE 2006 -
The M.E. Conference 2006
An Update on Clinical Diagnosis, Research Trends and Educational
on 12th May 2006 in London
Comments from delegates and non-delegates to the conference -
AB (July 2006)
watched the ME Conference DVD at the weekend. I have to confess
that I cried all through the first DVD. Living with ME, you get
so used to putting up with ignorance and misunderstanding, and
so to hear a group of people gathered together in one room
talking about ME sensibly, was just totally overwhelming.
I can't thank you and everybody else enough for organising this
event and for all the other work that you do.'
Thank you all for the hard
work that went into making the ME Conference 2006 such a
success. It was a huge undertaking and I am just so pleased that
it was a success.
I have just finished
watching the conference on DVD for the second time and it was
just like being part of the audience. The DVD recording
The ME experts were
excellent and able to speak to their audience in an informative
and enjoyable manner.
What struck me most
about all the speakers was their genuine commitment to their
patients, research or charity work. Although all working in
slightly different areas, they all share one common
bond…..working towards finding the cause and cure for M.E.
Having watched the DVD
I am so glad that there are still medical, charity and research
professionals who are genuinely committed to helping ill
It is so refreshing to
learn that doctors such as Bruce Carruthers and Byron Hyde still
exist in our modern “evidence based” medical world. These
doctors believe in listening to their patients and investigating
their symptoms. They do not write patients off.
Thank goodness for
researchers such as Professor Hooper, Professor Puri and Dr.
Kerr who have had the strength of character to persevere and
continue to research M.E, an illness which has been denigrated
by so many other researchers.
And of course, Jane
Colby, a dedicated charity worker who spoke with such passion
about the children who suffer M.E and need so much help to
convince social services and local education authorities that
they are physically ill.
The most moving moment
in the DVD came when Mrs. Criona Wilson spoke about her
daughter, Sophia Mirza. I thought that she was very courageous
to stand up and speak so honestly about her daughter’s brave
battle with M.E. and subsequent death. The medical professions
ignorance and lack of compassion towards Sophia and her illness
was truly shocking.
Dr. Gibson spoke
openly with regards to the inquiry into M.E. I hope that his
report will reflect the true biomedical nature of M.E.
Finally, may I say
“Thank you” to the team members who were in charge of ordering,
packaging and posting the DVD parcels. This must have been a
mammoth task in itself!'
dvd film) is such a great idea for those of us who simply
didn't have the energy to attend This is a very informative web
site. Many thanks.'
'Thank you so
much for the wonderful Conference last Friday. I came away
feeling more positive about the future for people with ME (my
two children aged 17 and 13 have been diagnosed with it) than I
have since they became ill.'
the conference last Friday and had a great time – I enjoyed the
event a great deal and felt that it was a huge success – you
should be very pleased.'
thanks for your help and many congratulations again on an
you for your message and for such a wonderful conference. For
some of us, it required a lot of effort to continue until the
end, but it was worth it.'
you for organising a great conference. Do you have the correct
address of Dr Byron Hyde as I would like to write to say thank
you for attending and speaking. Thank you so much.'
'Thank you for
all your hard work.
Venue: V Good
Organisation: V Good
Presentations: V Good
Comments: I feel that there was inadequate rest facilities
for PWME- the noise + crowding of the rooms used for breaks,
along with the lack of seating was hard to cope with, also
queuing for refreshment/food. The seats in the hall were good as
they were high-backed
Speakers were excellent- I
hope there will be another conference next year. well done for
organizing such a great event
det er vi som skal takke.
Jeg var veldig imponert
over det flotte programmet og arrangementet dere hadde fått
Jeg sier det hele tiden,-
jeg er overveldet over kunnskapen, engasjementet og
aktiviteten til ME-syke og deres nærmeste famlie og
Det var veldig inspirerende,
og jeg har fått nytt pågangsmot." I am happy if I can make a
Jeg vil gjerne sende dere
vår DVD fra vårt prosjekt; "Qigong in treatment of ME/CFS".
Den har engelske
undertitler og er et fint møte med en gruppe ME-syke. Jeg
tror dere vil ha glede av å møte dem også. Men da trenger
jeg en adresse, så hvis dere er interessert , så vil jeg
gjerne gi dere et eksemplar.
Med vennlig hilsen'
you for a very good conference'
for the conference. I thoroughly enjoyed it'
you to you guys for organising it. My father and partner were
very impressed by the organisation on the day, the venue, the
helpful people there and the informative speakers. I am now
reading all the buff they bought back to me! Having worked in
event organisation in the past i know what a nightmare it can
be! Well done and i look forward to hopefully attending next
years conference! '
was fantastic, beautifully organised and executed. I'm buzzing
with new ideas and boring my family rigid with it all. Thank you'
congratulations on organising the conference. Wish i could have
all who helped to organise the conference and freely gave their
own time and efforts so that it could happen - a big thank-you
(and I'm sure I speak for others too). It was very inspiring and
I hope that it can be the first of many, each with increasingly
better news about the progress of research.'
for organising the event, it's reassuring to know that things
are happening still. I am fortunate that with a very supportive
wife, family and (eventually) GP, my symptoms are under control,
but I know there are many who have not just the problems of ME
but the even more difficult problems of prejudice,
misconception, disbelief and self doubt. Keep up the good work,
and thanks again.'
you for the marvellous conference'
'Thank you for Friday. It was a terrific achievement.'
'Yes it was a great day even though the people
with ME among our party are suffering a bit with the after affects! Me included.
Well done to you all for a super event,
with great speakers and organisation'
CONFERENCE 2006 One of the key events of National ME week was
the 2006 Conference, held in London on 12 May.
Rather an early
start for ME patients - they wanted us registered and in
position by 9am! We did the best we could and it was worth the
effort in order to listen to a selection of top speakers in the
It was interesting to be in a mixed audience of ME
patients/carers and doctors. I arrived during the second item:
Dr Bruce Carruthers' talk on the importance of diagnostic
criteria. He is the principal author of the Canadian Criteria ,
officially known as ME/ CFS: Clinical Working Case Definition,
Diagnostic and Treatment Guidelines. A Consensus Document. He
sees the diagnosis and treatment of ME as arising from a
clinical approach through which patient and doctor work together
to take a thorough history, exclude a number of other
conditions, tie down the symptoms, estimate their severity,
develop a treatment programme, manage the treatment - modifying
as necessary and prevent secondary symptoms (such as
depression). Dr C believes that this process explores the
illness, revealing ME to be a "dynamic and interrelated entity".
An overview of the Canadian document was available for
Professor Malcolm Hooper (Emeritus Prof of Medical
Chemistry) came next. He pointed out the overlapping symptoms of
ME, AIDS, Gulf War Syndrome and chemical poisoning - all affect
the neurological, immune and endocrine (hormonal) systems. He
stresses that these illnesses were clearly of the body not the
mind and showed slides of how an ME patient's body reacts to
exercise by generating vast numbers of free radicals.
Spectroscopy was a useful tool for looking at the chemistry of
the cells undergoing what he referred to as an "aberrant immune
response". Organs malfunction such as the heart which gets an
uneven blood supply and the liver which cannot get rid of toxins
efficiently, The penetration by the virus of the blood- brain
barrier has a number of outcomes and the brain fog which we
experience can be understood from scans of brain activity.
Colby, former head teacher, ex-ME patient and Chief Exec of
Tymes Trust spoke passionately about the plight of children with
this condition who are wrongly advised to put education before
health with the consequence that health rapidly worsens, thus
undermining education completely. Her research points to the
high numbers of young people affected, clusters of ME and a
profound lack of understanding - in extreme cases parents were
accused of Munchausen's-by-proxy. On the positive side, an
interactive teacher training programme on ME will be available
from September 06 and the Learning and Skills Council is
producing on-line courses for 16 + age range.
After lunch we
moved on to Dr Byron Hyde, whose talk was backed up by a booklet
entitled A Brief History of ME and an Irreverent History of CFS.
A clear distinction was made between the two conditions, the
latter often being mistaken for undetected major diseases (15
were listed in the booklet). He traced several case histories of
people who developed ME, highlighting out a range of
pre-conditions and even presenting a `recipe for ME' which
included professions where you come across a lot of infections
(`school child' could be included in this!); repeated
exhaustion; immunization immediately followed by travel abroad.
His point being that the immune system is already under stress
when you encounter the virus/chemical cocktail etc.
traced the development of ME through Primary Infection Phase,
Chronic Phase, Testable Brain Changes, Pain Syndromes, Major
Sleep Dysfunction, Muscle Dysfunction, Vascular Dysfunction,
Endocrine Dysfunction. He observed that often more than one
family member became ill.
Dr Jonathan Kerr is researching gene
differentiation associated with ME. His was a technical
presentation that showed the process at cellular level and
tested the hypothesis that a number of genes involved in 6 key
areas of body function are affected. Mass spectrometry showed
unusual peaks in samples of blood. It is hoped that his insight
into the mechanisms of the disease will point to treatment
associated with ME. He has designed a trial which will test the
use of interferon beta on patients with ME - this drug should
enhance the immune system, help T Killer cells become more
effective, is anti-viral and has a good safety record.
man known to those of us who take the EPA fish oil supplement,
Prof Basant Puri. He started by describing how sophisticated MRI
scans show that there are raised choline levels in brains of ME
patients - this demonstrates that they are not making sufficient
fatty acids. He then briefly went over the process described in
his book which shows how this can be corrected by taking EPA +
appropriate vitamin and multi-mineral supplements while
admitting that this is not the whole picture. Whether ME is
caused by a virus or a bacterium (such as Borrellia) the
symptoms seem to die down but in fact the organisms have been
multiplying and have migrated into the brain. Now established,
they merely await a trigger to spring into life causing a
chronic condition. Prof Puri believes that certain complementary
therapies are helpful, in particular Alexander Technique and
Perrin Technique, the latter is a type of massage that focuses
on lymphatic drainage. In fact Mr Perrin, an osteopath, was in
the audience and able to supply information on how he works to
stimulate neuro-lymphatic drainage and to lessen the
inflammation in the spine.
The Open Forum began with the
heart-breaking contribution of a mother whose daughter with ME
had been sectioned, following the police breaking down the front
door, and received wholly inappropriate psychiatric treatment.
After a fight the family got her back home. The daughter died,
age 22 when she became unable to take food or drink. I left at
this stage so cannot comment on possible topics for further
research that will have emerged from this interactive session.
So what are the main points that came out of the
||Since a prolonged inflammation
is at the heart of this condition, all speakers
advocated use of Myalgic Encephalomyelitis not
Chronic Fatigue Syndrome; most, if not all,
illnesses cause `fatigue'.
||(The term ME translates as My
= muscle / Algic = pain / Encephalo = brain / Mye =
spinal cord / Itis = inflammation).
||Inflammation is at the heart
of ME - an inflamed immune system, inflammation in
the muscles and in the blood vessels
||The illness is not and never has
been `all in the mind'. It is wholly physical with
observable, measurable symptoms - brain dysfunction
being one of the foremost.
||There is a
genetic predisposition for ME
||An ME patient is really ill -
their immune, hormonal and neurological system are
compromised - so DON'T MAKE US EXERCISE! Would a flu
patient be encouraged to undertake a programme of
||The truth about ME is already
out there - why does widespread ignorance and
wanted to get in a quick note to tell everyone how successful I
believe the London M.E. Conference was on May 12.
were well-chosen both for their deep knowledge and understanding
of the illness, and to give a broad representation of different
issues involved in understanding M.E. today.
I did get to meet
Dr. Ian Gibson, Member of Parliament, in person, and I only wish
we had someone on Capitol Hill in Washington who would start an
inquiry into the reasons that M.E. somehow became "CFS" in the
United States. I have high hopes that the Gibson Inquiry in
Parliament will help put support for M.E. back on the right
It was a lot of fun to meet people I have known for years
on internet - though it was also sad, because many are too sick
to come out any more. It only served to remind me of the urgency
of the mission to tell the world about M.E., to learn how it is
caused and the best way to treat it, and finally to come up with
new testing and treatments through support for good, solid,
sound, unbiased scientific work.
Dr. Ian Gibson, Member of
Parliament, spoke about the progress of the Gibson Inquiry. He
was followed by Dr. Bruce Carruthers, who explained the ME-CFS
Consensus Documents (and provided all of us with copies of the
summary version). Dr. Carruthers' summary can be found at this
After a break, Professor Malcolm Hooper gave an excellent summary of
the state of biomedical research today. Prof. Hooper stressed in particlar the damage that the so-called "biopsychosocial" model
of M.E.-CFS has done to patients. Both doctors and patients are
being told not to listen to what the patient knows about his/her
own body, not to trust how the patient feels about his/her own
body, and not to trust the patient's own thoughts about the
illness. In other words, the patient becomes an inanimate,
He continued to show that here is no hard
evidence that Cognitive Behavior Therapy and Graded Exercise
Therapy (CBT and GET), the only treatments to come out of the "biopsychosocial"
school, actually works. In fact, studies have shown they have
been dismal failures when used on the group of patients in the
UK who call themselves the "twenty-five percenters" because they
are the subgroup of M.E. patients who become so ill for so long.
Jane Colby, who published a pathbreaking book on ME-CFS in
children in 1996 and continues to research the problem, talked
about the problems that children in the UK are having with
recognition of their illness and special needs. I found her
current work on clusters outbeaks among schoolchildren to be
very interesting and promising. She said that the outbreaks
follow the same pattern of polio outbreaks decades ago. I
thought it was a brilliant idea to follow the geographical
design of outbreaks among children - much easier than doing so
among adults, and I believe this research is going to provide us
with a lot of information about how this disease works. We heard
the hearbreaking story of yet another unnecessary and young
death, beautiful young Sophia who could not get a doctor who
would treat her disease as something other than psychosomatic,
and after a horrific experience of being committed unwillingly
to an institution, eventually died last year of what can only be
called medical neglect at the young age of 32.
After lunch we
were treated to Dr. Byron Hyde's description of the development
of M.E. and CFS; the deep problems presented by various CFS
research definitions; and what we already KNOW bout the pathophysiology of this disease. Dr. Hyde emphasized that
fatigue cannot be the defining criteria for the disease because
profound fatigue is a characteristic of ALL major illnesses. The
single defining symptom of ME-CFS is BRAIN DYSFUNCTION. If a
patient doeds not have CNS dysfunction, they do not have M.E.
Dr. Jonathan Kerr presented a fascinating description of his own
current genome research, separate from that of the CDC. I was
pleased to hear that while all of the patients in the study fit
the Fukuda and CDC current definitions (so the research can be
compared with that in the U.S.), Dr. Kerr was careful to include
patients who were bedridden - the type who do not normally end
up in studies because they can't come out to the clinic.
to write about this study in more detail later, but I was
convinced after the formal talk - followed by a private one -
that he has succeeded in finding usable markers that will help
demonstrate the physicality of the illness at the same time it
leads to markers to diagosis it, and help lead pharmaceuticals
to be able to develop treatments. Dr. Kerr is following his
first, small study with a larger one, but thus far he believes
he will be able to demonstrate conclusively that ME-CFS is a
multi-systemic disease, and that Interferon-B may be able to
Professor Basant Puri's presentation on lipid neuroscience was a
bit difficult, but interesting. Using multi-nuclear SPECT
topography he has been able to find that patients with M.E. have
raised levels of cholin, CRr/PCr, and NAA, which is in line with
what some other researchers are finding, specifically Chaudhuri
(2003), using proton neurospectroscopy, and Tomoda (2000).
speakers at the conference were all very clear and informative -
The conference sold out, so every seat was taken, and I got into
trouble for making too much noise typing (couldn't find any
place to hide) - so I'll have to decipher my handwritten notes
and my handwriting, I am afraid, leaves much to be desired.
have jetlag - and tied-lag from just getting to be in London! -
so it may be a week - but I promise everyone a good thorough
Of course, in the meantime there could be one come out
on the Invest in M.E. website, which is here:
I could not complement this group
more - they did a terrific, professional job. My heartfelt
thanks to all the speakers, who gave their time freely to this
project. I am so grateful I had an opportunity to attend.
I'd offer my two penny's worth feedback on the really good Invest
in ME Conference held yesterday in Birdcage Walk, Westminster.
People came from all
4 corners of the country and some from abroad too and the sun
shone beautifully. It was a pleasure to put faces to many names
I only see in print though there was very little break-out time
as all the speakers over-run!
Invest in ME, who
organised it, did a really good first-time job.
Hooper was a really entertaining speaker and very down to earth
as was Dr. Byron Hyde of the Nightingale Research Foundation. I
was a bit mentally challenged though by the talk given by
Dr. Bruce Carruthers, Principal Author of the Canadian Guidelines,
but Dr. Ian Gibson, MP for Norwich North and chair of the
Inquiry into ME, had us all in stitches.
As for the guest
speakers' presentations - they were riveting - quite
scientifically complex but all were refreshingly reassuring,
factually fascinating, and, most importantly, there was a firm
consensus as to what ME really is - a legitimate physical
illness - as well as a heartwarming unanimous condemnation of
those who are scuppering our work, whether they be politicians,
scientists, educationalists, policy makers or economists.
Most of this can be
put down to ingrained prejudice and the usual "all in the mind"
suspects plus a huge luck of funding. The term ME met majority
approval with a lot of mention about subsets and the damaging
effects of using the umbrella term CFS. Nothing new there of
course but great to hear when it's said by all these leading
scientists as well as Prof. Ian Gibson himself (who's account of
his Enquiry was really interesting and very humorous).
Jane Colby's talk
was excellent and her history of how the Education Establishment
failed so many youngsters was like a perfect description of what
my own daughter went through when she was of school age. The
Tymes Trust's latest initiative to train teachers about ME
sounds wonderful. From the floor we heard the heart wrenching
and disgustingly shameful account, tearfully told by the
devastated mother of a young PWME who tragically died due to her
doctors' ignorance and prejudice. There were discussions on
chemical poisoning, comparisons with other major illnesses and
many negative comments about Simon W., CBT and GET and all the
usual suspects with solid research to back it all up.
treatments were thin on the ground, but Prof. Puri talked about
the importance of taking VegEPA with an nutrient rich diet and
there was a feeling from listening to Dr. Jonathan Kerr. that a
drug to fight ME, probably already in existence and being used
for other illnesses, would, one day, be forthcoming thanks to
the excellent gene research being undertaken.
Though at the end
each member of the panel was asked what it is that, in their
opinion, is really needed, the answers were rather utopian and I
wished that grass root reality at had been addressed e.g..
finding a knowledgeable and sympathetic GP, the whole Benefits
issue, treatments available through PCTs, etc. etc. I longed for
a concluding, umbrella resolution as to how to organise and
coordinate what is being done by all the individual pockets of
excellence and everyone's heard work throughout the country. In
fairness though, the title of the Conference was "An Update on
Clinical Diagnosis, Research Trends and Educational Support".
I guess that is
still too far off in the future and we have to be patient and
wait for the Gibson Enquiry to report back on its findings. But,
exhausting as it was - I got up at 5.15 and got home at 8.00pm
(and I don't have ME!) I think it was a huge success and very
smoothly run. Well done to all those PWME who managed to get to
the splendid venue, sat through the whole day and then somehow
got home again! '