Invest in ME Newsletter
Invest in ME's April 2008 newsletter.
IN THIS ISSUE
International ME/CFS Conference
The RSM Conference
New RSM Conference
Psychosocial Research World
"Lost Voices" -
the ME Book Project
International ME/CFS Conference
CMO at the IiME Conference
In last month’s newsletter we commented on the engagement
process regarding the CMO. We are pleased to announce that
the CMO has agreed to be represented at the IiME
International ME/CFS Conference in London on 23rd
This will be the first time that the CMO will
be represented at the annual biomedical research conference
and we hope it marks a turning point and perhaps a change in
direction for a future strategy for ME/CFS. The
recommendations made from the CMO's report of 2002 (see
here) should have been put into practice by now but have not
been. This is an indictment on the government for allowing
these recommendations to remain dormant.
MRC at the IiME Conference
We are also pleased to announce that the Medical Research
Council will be represented at the conference.
We have several well known authorities on ME/CFS also
attending the conference, besides the speakers, and are still hopeful of
pending invitations to notables being accepted.
We are also glad to welcome many ME support groups
and professional healthcare staff from around Europe and
from as far afield as USA and Australia. This will provide another ideal
opportunity for networking, sharing news and ideas and
re-invigorating ME awareness.
See our January newsletter (click here) for details of the
presenters at the conference.
Genomic analysis revealed some common (neurological, haematological,
cancer) and some distinct (metabolic, endocrine,
cardiovascular, immunological, inflammatory)
disease associations among the subtypes. It is
particularly interesting that in these
genomically derived subtypes, there were
distinct clinical syndromes, as would be
expected in a disease with a biological basis
Dr Jonathan Kerr J Clin Pathol 2007:
International ME/CFS Conference 2008 -
Sub Grouping and Treatments of
After several people asked our position on the planned RSM conference on chronic fatigue Syndrome we issued a
statement on this subject.
Our statement on the RSM conference was
However, we obviously feel that the ME community should also
focus as much attention on the IiME conference showing biomedical research.
The inconvenient truth is that the government will not
change course and begin to fund substantial biomedical
research into ME/CFS. The indifference shown by the current,
and previous UK health ministers is a clear message to all
that the establishment view will not change. As some
advocates have been saying for years it is left to the ME
community (including patients' relatives and friends) to
self-fund biomedical research.
We are again grateful to Margaret Williams
and Professor Malcolm Hooper for
researching their latest article regarding
the ways of the psychiatric lobby in treating ME.
profoundly serious issues in which Professor
Wessely seems to have been shown to be
completely wrong, yet no-where has it been
possible to find a retraction of, let alone
an apology for, the incalculable damage that
many people believe his misinformed opinions
and policies have caused.
psychiatric disorders are diagnosed on
opinion and not on a definitive diagnostic
test, Professor Wessely demands
“evidence-based medicine” supported by a
definitive test and specific biomarkers
before he will accept the reality of
ME/CFS. Whilst there is as yet no specific
diagnostic test, there is an abundance of
biomarkers which support the diagnosis, but
Professor Wessely continues his determined
and sustained denial and dismissal of this
scientific evidence that clearly proves him
to be wrong.
The full article may be
read here (web page).
IiME sent the above document to the
President of the Royal Society of Medicine and also invited
her to our conference on 23rd May.
We have this reply from Baroness Finlay -
Thank you for your letter and
the paper on ME which includes many important
references. I do appreciate being asked to the
meeting on 23 May but unfortunately I have a
prior engagement on that day. However I am sure
you will have a most interesting day.
The RSM are planning a 'Medicine and Me' meeting
specifically on ME which aims to bring together
patients, carers, doctors and other healthcare
practitioners to discuss care and research
issues in this condition.
I do hope both meetings will ensure greater
understanding of ME and the lives of ME
news from the President of the RSM regarding the "Medicine
and ME meeting. However, we note that another psychosocial
conference is now organised by the RSM in Bristol in
here). Included amongst the participants are many
notable psychiatrists and patients are represented by AYME -
who often seem to be involved in these psychosocial
conferences -and whose medical adviser (Esther Crawley -
also speaking at this conference) now claims in the AYME
Link magazine that up to 94% of children seen in specialist
ME/CFS services (one of the 13 CNCC ME Clinics) get very
much better or completely better after treatment.
Perhaps one should not be surprised
at yet another establishment event being organised to
promote a psychosocial view of ME.
Our reply to the Baroness is being prepared.
and more of the same...Contradictions of the
Pyschosocial Research World
Margaret Williams'/Malcolm Hooper's paper above it is
revealing to read the latest paper to come from proponents
of the view of ME as a behavioural illness [Etiology of
Chronic Fatigue Syndrome: Testing Popular Hypotheses Using a
National Birth Cohort Study - see
(Note - the term CFS is used by these authors to cover ME as
The conclusion of this paper is that -
who exercise frequently are more likely to report a
diagnosis of CFS in later life. This may be due to the
direct effects of this behavior or associated personality
factors. Continuing to be active despite increasing fatigue
may be a crucial step in the development of CFS
Yet it is
very interesting to note that the NICE guidelines (heavily
influenced by Wessely-school psychiatrists) advised pwme
against resting and advised patients to carry on with activities
even if they feel bad!
Similar studies by psychosocial
researchers state that the causes of CFS
could be -
sedentary behaviour - [Childhood predictors of self reported chronic
fatigue syndrome/myalgic encephalomyelitis in
adults: national birth cohort study
So, if one were taking the above studies seriously, then
being either active (first study) or sedentary (the last
study) at one point in one's life can lead to CFS (or
myalgic encephalomyelitis) in later life. The
contradictions are a clear indication of the lack of
robust science in all of the psychosocial-oriented views
To find the cause of ME research must focus on genetics,
familial illnesses, infections, vaccinations, occupational
hazards, the environment, chemical exposure, major traumas ,
surgeries etc. Most people with ME report being
healthy and active prior to becoming ill and many can pinpoint
a day when their illness began.
It would be interesting to see what the
results would be if similar research looked at the
behaviour of people later diagnosed with an illness. People with cancer, heart disease, diabetes etc.
might well turn out to have exercised frequently, have
psychiatric problems, be sedentary, been abused as children
etc. Would these behaviours be seen as causative for these
topics clearly show the misinformation, the contradictions
of the behavioural studies, and the lack of rigorous
science from establishment organisations and individuals
which has been occurring for the past decades with regard to
ME. The above also illustrates that the establishment view
of ME, aided by organisations, individuals and some ME
charities is continuing to sell out people with ME.
IiME have campaigned for a substantial and
ring-fenced funding of biomedical research into myalgic
encephalomyelitis since we were formed and have attempted to
get the government and the Medical Research Council to
create a policy based on science.
News recently comes that
Professor Stephen Holgate,
a professor of clinical pharmacology at Southampton
University, is to act as chair of a new multi-disciplinary
panel set up by the MRC which will focus on the subtypes and
aetiology of ME/CFS as part of a plan to fertilise
cross-disciplinary research activity in this field.
At first sight this might at last seem to be
going the way for which we have campaigned for so long.
Indeed, as we have attempted to demonstrate the necessity
for Sub Grouping of ME/CFS - as proposed by the theme for
our conference on 23rd May - a change in MRC strategy to
ensure that research on sub typing of ME/CFS is performed
would be a great achievement.
However, IiME feel it wise to caution
against premature judgement on this.
It is abundantly clear that the views expressed by Wessely-school psychiatrists
have no role to play in treating myalgic encephalomyelitis.
The idea that there can be any collusion or
working together with a powerful psychiatric lobby which
currently controls funding for research into ME is a
disservice to people with ME and their families.
Whilst a holistic approach does need to be
taken toward any illness it is impossible to accommodate
such blatantly biased views as have been presented over the
last decades from these vested interests who have so
controlled strategy and funding of research into ME.
Invest in ME take the position that any
intention to bring together the biological and psychological
ME/CFS factions in order to encourage the MRC to give money
Any research performed in collaboration with
the psychiatrist lobby who have so manipulated the lives of
people with ME and their families over the last decades is
doomed to examining relationships between valid and proven
biological markers and generic, unproven and sometimes
deleterious treatments. This will merely delay the only sure
way of finding a cure for ME - biomedical research.
There has been an incomprehensible pattern
of behaviour toward ME from government, MRC, NHS, some ME
charities and individuals over the last decades and it has
been the ME patient and family who have suffered. A parallel
world of denial and obfuscation has existed backed by an
establishment intent only on removing any real hope of
curing this illness.
The only strategy which makes any sense from
a scientific, moral or just viewpoint is to fund biomedical
research into ME and treat ME in the same way as cancer,
Parkinson's, MS or any other mainstream illness.
Attempts by organisations or individuals to mix these
parallel worlds is consigning another generation of pwme and
their families to the medical scrapheap.
We should not accommodate the psychiatric view with
biological view of ME. There should be no attempts at mixing
these up in the name of having a balanced view.
All studies performed using the Oxford
criteria do not study people with ME as classified in ICD10
CBT should have no more prominence in ME research than it
has in heart disease or cancer. If someone is cured from ME
using psychological therapies then their problem was
likely psychological to begin with. No one has, to our
knowledge, been cured from cancer, heart disease,
Alzheimer�s , MS etc. by CBT or similar therapies and no one
claims to cure these illnesses with such therapies either.
Why should it be different with ME?
We need to adopt proper diagnostic criteria,
the Canadian consensus criteria, to differentiate idiopathic
chronic fatigue, burn out, overtraining syndrome,
fibromyalgia, multiple chemical sensitivities etc. from ME
and find the correct treatment for each of these groups. We
don't expect miracles but want an objective scientific
approach to ME.
parallel worlds can never meet
and compromises cannot occur -
Journal of IiME Volume 1 Issue 2
He was here 2 and a half hours
and told me to get rid of my "energise DVD (from
the charity ME Research UK)", that ME was all
due to deconditioning and negative behaviour
patterns. He said the only one keeping me in
that bed is me. The confusion is due to me not
using my brain, hearing problems due to not
using my ears, light sensitivity due to not
going out in the light and so on and so forth.
Why should I expect a blue badge when that would
only discourage me from walking, he said.
I felt humiliated and ridiculed
by someone who was clearly a psychiatrist of
some description. He said he gave seminars to
students on "people like me". He seemed to enjoy
the whole thing.
-Julie (UK person with ME)
Another story to insisting on
separation of these parallel
worlds - from Pat Fero
Ryan is often too weak to use a regular wheel chair. Insurance is denying the
motorized wheel chair prescribed by an MD, and fitted for Ryan by a medical
supply company that originally had a work order *from* the insurance company to
go to the home and fit a special chair. Why would that happen?
Clinic for ME/CFS
Dr. Jonathan Kerr has recely started a clinic.
This is within the Sir Joeseph Hotung Centre for Musculoskeletal
Details can be found in the Sioseph Hotung
) and also at
'Lost Voices' - The ME Book Project
The ME Book Project continues apace. We would still like to
hear from families of younger children with ME. So please
contact us if you would like to be involved in this first phase
of the project.
We have been pleasantly surprised by the contributions given
already and the support of well-known ME researchers to add
their names to the project.
To enquire further and/or to participate in the project
please contact IiME -
Best wishes to all
Invest in ME
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