reply 2 UTV

Ian McIlroy
Belfast


I would first of all like to thank UTV for trying
 to highlight
the
plight of ME sufferers in Northern Ireland and
also Antoinette,Paul and especially
David Christie for bravely appearing on the programme
 to clearly demonstrate
the dire situation severely affected ME sufferers in
Northern Ireland find themselves in.



As I have had ME for 20 years now, I am well
 aware of the poliltics
involved with ME both internationally as
well as locally.
Having taken
calls to a local ME helpline in the past,
I am also only too well aware of
the impossible black hole of a situation
ME sufferers in Northern
Ireland find themselves in,
when trying to obtain appropriate medical help.



In contrast to the Christie family's
contribution to the programme I
felt that Ken Hull,
Chairman of the Northern Ireland ME Association
(NIMEA), was woeful and totally failed
to clearly advocate for ME patients
in Northern Ireland.



I can well understand other sufferers
anger and frustration
at Ken’s
response to a question about Dr Derek Enlander,
an Ulster born,
internationally recognised ME specialist clinician,
the like of which we are
sorely crying out for here.
I was also angry that all Ken could then come
out with was that you could get
graded exercise therapy and cognitive
behaviour therapy on the NHS,
which is just so totally irreverent to the
likes of severe sufferers like David Christie,
whose plight had just
been shown.
It was such a let down and totally
failed to address the
urgent need we have here for proper
 medical services for ME patients.



Ken then went on to promote the Belfast CFS Clinic,
which offers the
treatments of Graded Activity and CBT
for ME patients,
who are well
enough to attend the clinic.
As has been mentioned in other people’s
comments these treatments are based on a
psychiatric model of the illness and
have been shown to be of little or no help in
actually improving an ME
patient’s condition and for many have
resulted in a relapse or
worsening of their condition.
Unlike Ken I have yet to speak to anyone whose
health actually improved
as a result of attending the Belfast CFS Clinic
and six years ago I did not renew my membership
to the NIMEA, as I was
so angry at their tacit support for the Belfast CFS Clinic.



Indeed the NIMEA's current position that they
support the Occupational
Therapist at the Belfast City hospital and apparently
(from their
latest statement issued a few days ago
and maybe I am misreading it)
now do
not support the liaison psychiatrist who supervises
the CFS Clinic at
Windsor House (Mental Health Service)
at the Belfast City Hospital in
Belfast is at odds with the fact that
it is simply impossible to divorce
one from the other.
The clinic's treatment model offered is based on a
psychiatric model of the illness
(propagated by a group of UK
psychiatrists),
which presupposes that the illness
has no physical biological
basis (which, apart from being wrong,
has multiple consequences for the
patient) and that sufferers just need
to be rehabilitated
This flies in
the face of current and historical
 biomedical research into ME,
which
has recently even shown ME to have a genetic signature.
This research
was by one of a number of researcher's
 working in the field,
who are
originally from Northern Ireland.
ME is also recognised by the World
Health Organisation as a neurological illness.



I have personally attended
Northern Ireland ME Association conferences
in the past where the liaison psychiatrist
who runs the Belfast CFS
Clinic has spoken and I have heard him
clearly state his view that,
while
ME patients had physical symptoms,
they did not have an underlying
physical disease process (May 2001).
He is further documented as saying
"Since there is no disease to cure,
the task usually is one of
rehabilitation for the sufferer" -
Radio Ulster interview (end of 2002) and "The
aim is get them back to what they once were.
The way to do that is,
physically, with rehabilitation and in
 terms of their mental attitude.
These people need to have their attitudes changed.
If there is a fear that
there is a underlying disease,
that is a major barrier on the road to
recovery."
 - Belfast Telegraph article - 5th April 2004



I have also been concerned that recent
information from the NIMEA (2007
NIMEA conference flyer) stated that the liaison
psychiatrist running
the Belfast CFS Clinic was holding discussions with
the NIMEA with
regard to expanding the model of the
Belfast CFS Clinic throughout Northern
Ireland. Unbelievable?



Imagine if you will the situation where an
MS charity gave a platform
to a doctor who said that MS was not
a real physical illness,
the members would be up in arms,
yet this happens in an ME charity here.



So the NIMEA has been for years giving
a platform to a liaison
psychiatrist who has repeatedly said he doesn’t
believe ME to be a real
physical illness
 (this is not a neutral position on the part of NIMEA,
as they
would like to have you believe)
and in his clinic offers psychiatric
treatment based on the premise that
ME is not a physical illness,
for
the neurological illness ME
(and it has appeared to local sufferers for
many years,
NIMEA have been supporting and
collaborating with the
Belfast CFS Clinic).
This tacit support for the Belfast CFS Clinic by the
NIMEA is actually hindering real progress
being made in achieving a
situation where local sufferers actually get
the appropriate medical help
they need.
The local Department of Health when
lobbied by local ME
sufferers to provide proper medical services
for ME patients has responded
that there is already the Belfast CFS Clinic
and further that “the NIMEA
has developed strong links with the Belfast CFS Clinic”.



The recent statements by the NIMEA
where they opposed psychiatric
management of ME in there submission to the
Belfast CMO in November 2007,
reject the main NICE recommendations and
call for biomedical research
into ME are all welcome and commendable,
but they are undermined by their
insistence on not taking a clear and
unequivocal stance with regard to
the psychiatric Belfast CFS Clinic.



While the NIMEA jumps through hoops trying
to find a form of words that
will allay local sufferers concerns
about their apparent support for
those who do not believe ME to be a real
illness and at the same time
are involved with discussions with those
same people to further expand
the BCH CFS Clinics model for treatment
throughout Northern Ireland, many
local ME sufferers will not have any faith
in them to represent them.



Senior officers in the charity NIMEA
who have presided over the charity
for this last decade and whose actions
have enabled the status quo,
should seriously ask themselves if they are
the best people to represent
ME sufferers in Northern Ireland,
especially when doing media
interviews.



Local ME sufferers I have spoken to also wonder
just how much some
officers of the NIMEA feel themselves
constrained in what it is they can
say and do in certain matters by the
fact that the NIMEA's core funding
is provided by the Northern Ireland
Dept. of Health.



So what then is needed?
For a start the Northern Ireland Department of
Health must recognise that
ME/CFS is a physical illness and as a
consequence that it
will be managed in mainstream Health Board
planning for
physical illnesses.
ME is a complex physical illness,
affecting multiple
systems in a person's body and in
Northern Ireland we need dedicated
specialist ME clinicians and nurses
(with backup from other medical
disciplines), who believe it is a
 real physical illness
and who are keenly
following and indeed collaborating
with the international research
effort going on into the causes and
treatment of ME.
And these medical
services must be accessible to all
ME sufferers,
including the severely
affected sufferers like David Christie.



Can I just end by saying that it is also
extremely disingenuous for the
Northern Ireland ME Association to have a
 dig at other ME
organisations in Northern Ireland regarding
the use of the term CFS (when they full
well know that the reality of the situation
we find ourselves in is
that doctors are giving ME patients
 a diagnosis of CFS),
especially so
when they, as it has appeared to local
sufferers for many years,
have
been the only local ME group supporting the
Belfast CFS Clinic,
which
promotes a psychiatric model and treatment of ME/CFS.