Upcoming Fundraising Events

ME MONTH

Events Monday 5th May, Belfast Marathon in Aid of ME Research
Saturday 10th May, Charity Night in Aid of ME Research,
Laurel Leaf,
Monday 12th May 10-12pm Kennedy Centre
Belfast Sunday 18th May 12-2pm Charity Spin in Aid of ME Research
Sunday 18th May, Sponsored Spin in Fall's leisure Centre 12-2pm
Saturday 31st may ME awareness day Asda Shopping Centre 10-6pm

Response From McGimpsey

Letter to Mr McGimpsey - April 2008

Dear Mr Mc Gimpsey, following my recent interview with UTV Life on Wednesday 9th April 2008. I did not take the decision to allow David to be filmed lightly.
David is unaware that this happened.

I am extremely annoyed about comments made by the Department of Health which stated that they do not fund ME. This is an insult to me as a mum and carer of my 15 year old child who has just entered his 4^th year of living with this dreadful illness, to my family and to the 6,999 other people living with ME in Northern Ireland.

I am writing to you once again to ask Why proper Bio-medical Funding is not being made. This is an absolute disgrace that we are now into 2008 and my son David now 15 is housebound to the extent bedbound.

The W.H.O ( World Health Organisation) classifies M.E. as a neurological illness yet there is one outpatients clinic in the City hospital run by a psychiatrist . We do not have one medical doctor experienced or educated in the treatment of M.E.

Why are ME sufferers only being offered this service? WHAT WE WANT IS A CURE.

Why are there no services available for young children and adolescents in Belfast?

My priorities with regards to ME:

Help my son live day to day and relieve the pain and suffering he is enduring even as you read this.

Raise awareness of the neurological disorder ME

Raise money for Biomedical Research into ME (because the government won’t give any).

I am writing to you today and asking you for a face to face meeting to express my disgust at the level of care provided to ME patients in Northern Ireland and the Department of Health’s continued apathy towards them.

My only hope is for David to get well, he cannot do this alone, please support him and our family in our continued struggle to free David from this prison that he finds himself in – support biomedical research into ME.

This is indeed a NATIONAL SCANDAL.

Hoping to hear from you.

ANDERSONTOWN NEWS 24/4/08

Research and support are needed for ME sufferers, Andersonstown News,
Belfast, 23 April 2008

I was hoping you would be able to help me in raising
much needed awareness about ME (Myalgic Encephalomyelitis) .

This is quite personal to me as I have a 15-year-old son housebound to the
extent of bedhound for past three years.

ME is a classified neurological illness which has been recognised by the
World Health Organisation and there is still no funding from the Department
of Health for this illness.

ME is usually referred to as the 'sleepy sickness' but is in fact a serious
neurological illness.

Just to gave You all some facts of ME; it's not a sleepy sickness, it's not
yuppie flu. It is, in fact, a complex disorder, characterised by profound
fatigue that doesn't get any better with bed rest and can actually get worse
with physical and mental exertion.

Here is a list of some of the many symptoms that my son has to endure on a
daily basis: sleep reversal, recurrent mouth ulcers, sore throat, trouble
with his vision, sensitivity to sound and light, severe headaches, chest
pain, joint and muscle pain, memory and concentration difficulties to name
but a few.

There is no known cure. ME has had a bad press as there is not yet a
diagnostic test. Many kids can miss out on education and are then completely
isolated from the outside work.

ME sufferers cannot live normal life.

If anything is to improve for ME sufferers, I think one of the first ports
of call is to get the NHS to recognise and support the extreme debilitation
that sufferers of this terrible illness have to face on a daily basis.

Social contact

Kids Who develop ME In their teens go into adulthood having lost all their
social contact, living each day in pain with very little understanding or
help from the medical profession.

Although it is recognised by the World Health Organisation, much of the
medical establishment refuses to accept this and brush it aside as a
psychological disorder.

This is disgraceful because there is now much scientific evidence that ME is
a complex physical disorder of the nervous/immune systems, possibly with a
viral cause.

Very little help is available on the NHS and sufferers and their carers are
usually left to cope on their own whilst their lives fall apart.

Trust me, I know, I have watched it destroy my child's life.

Conference

There is also an upcoming conference on April 28 in London and I'm appalled
to see that the majority of speakers
at this conference are either psychiatrists or clinicians from
psychiatric/ psychological backgrounds.

Only one ME charity has been invited to speak,being given only 25 minutes.

So the opinions and views of the majority of ME sufferers in Northern
Ireland and Britain once again will not be heard.

How can a conference, which is supposed to take a broad look at Chronic
Fatigue Syndrome, be so completely biased towards psychiatry/psycholo gy
opinions/treatments .

I am gravely concerned that this conference will therefore influence people
into thinking that this is a psychiatric disorder and should be treated as
such.

This will have implications for the management and treatment of this illness
for the thousands of people in Ireland and Britain (approximately 6,750
people in Northern Ireland) living with a diagnosis of Chronic Fatigue
Syndrome.

It will no doubt mean that therapies will continue to be offered to
patients, which are unhelpful and may actually cause harm to these
physically ill people.

This is an insult to my son, to me as his mother and the thousands of other
ME sufferers who are left to suffer in silence.

Treatments

No more, this has to stop! Without research into appropriate treatments, the
possibility of a cure will remain a dim and distant hope for sufferers and
we as a family can't bear the thought of this as we watch, and continue to
watch, the suffering that my son David has to endure on a daily basis.

Hopefully, you will be able to help me highlight this.

Many thanks for taking the time to read this.

Other ME Links

: mefreeforall.org ,

niceguidelines.blogspot.com

www.meresearch.org.uk

www.investinme.org/

www.brame.org/

www.tymestrust.org/

www.ayme.org.uk/
www.sophiaandme.org.uk

Radio Ulster

My interview with Radio Ulster
	the Saturday Magazine on Radio Ulster at: http://www.bbc. co.uk/northernireland/magazine/ until it is replaced by the April 19 edition of the show.

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.

UTV

	UTV LIFE	4 days ago
	Hi All As you are probably aware I agreed to be interviewed by UTV life to further promote awareness of ME and the lack or should I say nil services in Northern Ireland available to my son David to help him combat this illness. It aired tonight 9/4/08 at 5.30pm. I am extremely annoyed about comments made by the Department of Health which stated that they do not fund ME. This is an insult to me as a mum and carer of my 15 year old child who has just entered his 4th year of living with this dreadful illness, to my family and to the 6,999 other people living with ME in Northern Ireland. This shows how little people with ME are thought of and how ignorant the medical profession as a whole are. I would like to clarify who exactly Dr Derek Enlander is as the Chair of the NIMEA seemed to not know. Dr Derek Enlander who is due to see David in May, was himself born in Belfast, Northern Ireland. Dr. Enlander is Physician-in-Waiting to the British Royal Family and to several members of the British government during their visits to New York. He is an ME specialist. Unlike the doctors here in Belfast who have little or no experience of this condition, so how can they hope to treat it. He is pursuing a cure for this illness at the Mount Sinai Hospital in New York, as our Dr. Jonathan Kerr (ex Belfast) at St. George’s Hospital in London, and by Dr. Vance Spence (ex Strabane) at Dundee University. With regards to comments made tonight by Ken Hull, Chair of the NIMEA, these are not in keeping with my own personal views. I am not a part of this organisation and in fact had resigned my membership from the NIMEA some time ago, after comments made tonight I am very glad of this. I believe that the Chair of the NIMEA did a great disservice to the thousands of people living in NI with this illness in their promotion of CBT and GET. The existing evidence from surveys of over 3,000 patients suggests that such regimes are of limited value and at worst are harmful, leading to increased illness and disablement. His continued support/promotion of the CFS clinic in its present form and in its current location in a psychiatric unit in the Belfast City Hospital is an outrage and I know that many of their members feel the same. He would have been better spent sticking to his original press statement which stated the NIMEA’s three priorities for ME patients in Northern Ireland i.e. 1. The provision of basic NHS services, east and west of the Bann. 2. Specialist support for the severely ill housebound. 3. Research funding to find a cure. None of which Ken Hull deemed fit to mention on air in tonight’s show. I am extremely angry on behalf of my child that they would use him in such a way to promote therapies which will not help to cure my child of his illness and whose efficacy is being disputed by the many ME charity’s in the UK. Shame on you Ken. I do understand that he was given limited time to speak but he could have and should have done much better than this for the thousands of sufferers in Northern Ireland. With regards to the NICE guidelines that Ken Hull also mentioned. NICE do not recommend CBT and GET for people with severe ME, which David has. They do state however state that CFS/ME services should be provided by a multidisciplinary team i.e. neurologist, immunologist, infectious disease specialists, dieticians, occupational therapist, physiotherapist, nurses etc. Only 1 of these is in evidence at the CFS Clinic in Belfast, which Ken Hull, Chair of the NIMEA so eloquently promoted. My priorities with regards to ME: Help my son live day to day and relieve the pain and suffering he is enduring even as you read this. Raise awareness of the neurological disorder ME Raise money for Biomedical Research into ME (because the government won’t give any) Write to Mr McGimpsey and ask for a face to face meeting to express my disgust at the level of care provided to ME patients in Northern Ireland and the Department of Health’s continued apathy towards them. I would like to take this time to thank UTV life for allowing my family a vehicle to raise awareness of this illness. I did not take the decision to allow David to be filmed lightly. I hope that many people out there will contact the programme and express their anger and despair about the lack of services in NI for people such as my son David and if possible write to Mr McGimspsey re the same. My only hope is for David to get well, he cannot do this alone, please support him and our family in our continued struggle to free David from this prison that he finds himself in – support biomedical research into ME. Antoinette Christie

my letter concerning the rsm

	Dr Scadding Dean Royal Society of Medicine Wimpole Street London W1G 0AE Dear Dr Scadding I am writing with regards to your conference on Chronic Fatigue Syndrome. As a mum and a carer of a 15 year old boy who has been suffering for 4 years with severe ME, I was extremely upset to see that the majority of speakers at this conference are either psychiatrists or clinicians from psychiatric/psychological backgrounds. Only 1 ME Charity has been invited to speak, being given only 25 minutes. All others have been told to stay away. Why is that? The opinions and views of the majority of ME sufferers in NI and the UK once again will not be heard. Not one researcher who has been looking at the biomedical/organic cause of CFS has been invited to speak. Nor has any neurologist, for a condition which is classified as a neurological disorder by the World Health Organization. How can a conference which is supposed to take a “broad look at chronic fatigue syndrome” be so completely biased towards psychiatry/psychology opinions/treatments. I am gravely concerned this conference will therefore influence RSM members who will be attending into think that this is a psychiatric disorder and should be treated as such. Or maybe that was the intention of the Royal Society Medicine all along. It will have implications for the management and treatment of this illness for the thousands of people in the UK (approximately 6,750 people in Northern Ireland) with a diagnosis of Chronic Fatigue Syndrome. It will no doubt mean that therapies will continue to be offered to patients which are unhelpful, and may actually cause harm to these physically ill people. This is an insult to my son ,to me as his mother and the thousands of other ME sufferers who are left to suffer in silence. NO MORE this has to STOP. Were does this leave my son and many more like him ?. I hope that you or your loved once will not get ME as I would not wish this on my worst enemy. ME doesn’t pick and choose who it attacks so Watch out YOU could be next. This is an insult to every ME sufferer and to their family’s. Yours sincerely Antoinette Christie Belfast

UTV

	UTV LIFE	4 days ago
	Hi All As you are probably aware I agreed to be interviewed by UTV life to further promote awareness of ME and the lack or should I say nil services in Northern Ireland available to my son David to help him combat this illness. It aired tonight 9/4/08 at 5.30pm. I am extremely annoyed about comments made by the Department of Health which stated that they do not fund ME. This is an insult to me as a mum and carer of my 15 year old child who has just entered his 4th year of living with this dreadful illness, to my family and to the 6,999 other people living with ME in Northern Ireland. This shows how little people with ME are thought of and how ignorant the medical profession as a whole are. I would like to clarify who exactly Dr Derek Enlander is as the Chair of the NIMEA seemed to not know. Dr Derek Enlander who is due to see David in May, was himself born in Belfast, Northern Ireland. Dr. Enlander is Physician-in-Waiting to the British Royal Family and to several members of the British government during their visits to New York. He is an ME specialist. Unlike the doctors here in Belfast who have little or no experience of this condition, so how can they hope to treat it. He is pursuing a cure for this illness at the Mount Sinai Hospital in New York, as our Dr. Jonathan Kerr (ex Belfast) at St. George’s Hospital in London, and by Dr. Vance Spence (ex Strabane) at Dundee University. With regards to comments made tonight by Ken Hull, Chair of the NIMEA, these are not in keeping with my own personal views. I am not a part of this organisation and in fact had resigned my membership from the NIMEA some time ago, after comments made tonight I am very glad of this. I believe that the Chair of the NIMEA did a great disservice to the thousands of people living in NI with this illness in their promotion of CBT and GET. The existing evidence from surveys of over 3,000 patients suggests that such regimes are of limited value and at worst are harmful, leading to increased illness and disablement. His continued support/promotion of the CFS clinic in its present form and in its current location in a psychiatric unit in the Belfast City Hospital is an outrage and I know that many of their members feel the same. He would have been better spent sticking to his original press statement which stated the NIMEA’s three priorities for ME patients in Northern Ireland i.e. 1. The provision of basic NHS services, east and west of the Bann. 2. Specialist support for the severely ill housebound. 3. Research funding to find a cure. None of which Ken Hull deemed fit to mention on air in tonight’s show. I am extremely angry on behalf of my child that they would use him in such a way to promote therapies which will not help to cure my child of his illness and whose efficacy is being disputed by the many ME charity’s in the UK. Shame on you Ken. I do understand that he was given limited time to speak but he could have and should have done much better than this for the thousands of sufferers in Northern Ireland. With regards to the NICE guidelines that Ken Hull also mentioned. NICE do not recommend CBT and GET for people with severe ME, which David has. They do state however state that CFS/ME services should be provided by a multidisciplinary team i.e. neurologist, immunologist, infectious disease specialists, dieticians, occupational therapist, physiotherapist, nurses etc. Only 1 of these is in evidence at the CFS Clinic in Belfast, which Ken Hull, Chair of the NIMEA so eloquently promoted. My priorities with regards to ME: Help my son live day to day and relieve the pain and suffering he is enduring even as you read this. Raise awareness of the neurological disorder ME Raise money for Biomedical Research into ME (because the government won’t give any) Write to Mr McGimpsey and ask for a face to face meeting to express my disgust at the level of care provided to ME patients in Northern Ireland and the Department of Health’s continued apathy towards them. I would like to take this time to thank UTV life for allowing my family a vehicle to raise awareness of this illness. I did not take the decision to allow David to be filmed lightly. I hope that many people out there will contact the programme and express their anger and despair about the lack of services in NI for people such as my son David and if possible write to Mr McGimspsey re the same. My only hope is for David to get well, he cannot do this alone, please support him and our family in our continued struggle to free David from this prison that he finds himself in – support biomedical research into ME. Antoinette Christie Antoinette Christie antoinettec88.bebo.com familyfights4me