The Northern Ireland ME Association - THE FACTS

The following are the TRUE facts about the Northern Ireland ME Association, its work, the services it offers, and its ethos.

• The NI MEA runs an Administration Office in Belfast, and is staffed on a full time basis by the NI Administrator. She is the only employee.

• The NI Administrator has had ME, and understands the symptoms, the problems experienced by patients, the illness, the misconceptions that still exist, and the controversy surrounding the illness


• The NI MEA has a Management Committee, the vast majority of whom are, or have been, ME patients themselves; they are unpaid volunteers who give freely of their time to help others with ME - sometimes to the detriment of their own health.


• The Association has been in existence for 20 years, and therefore is not a new organisation, and is fully cognizant of the lack of facilities, care, treatment and management that still exists within the NHS. It is also fully aware of the degrees of severity that can happen with ME, and has seen at first hand the plight of severely ill patients.


• The NI MEA has always maintained that ME is a debilitating, physical illness - this is clearly to be found in our Mission Statement on the Homepage of our website:- www.nimea.org and elsewhere on this blogspot.


• The NI MEA has consistently made it clear that is does not advocate either Cognitive Behavioural Therapy (CBT) or Graded Exercise Therapy (GET), again stated on the website and on this blog.


• The NI MEA accepts the only form of "treatment management" that it would advocate is PACING - that applies now, has in the past, and will do in the future until a cure can be found.


• The NI MEA calls itself the Northern Ireland ME Association - not the NI ME/CFS Association, or the NI CFS/ME Association. The simple reason for this is that it did not, and will not adopt the term CFS, because it feels that by doing this it lends credibility to the "watered down" name for this awful illness. Neither does the NI MEA see itself as an "umbrella" organisation - we deal with ME only. We are, of course, also fully aware that many within the Medical profession still use the term CFS when diagnosing this illness - however the NI MEA does not feel it has to go along with this; Chronic Fatigue is only one of the myriad of symptoms, and therefore does not fully impact the true misery involved with this illness.


• The NI MEA does not give false hope of a cure - respected researchers, specialists and clinicians have already stated that, as yet, there is NO KNOWN PROVEN CURE for ME. This does NOT mean, of course that there is not help, certain treatments and management for the illness.


• The NI MEA does not advocate any form of particular treatment - either mainstream or alternative. We have found that some of these "treatments" can be counter-productive, disappointing for the patient, and in a very few instances nothing short of a scam. The Association feels that patients are intelligent enough to recognise these.


• The NI MEA has had contact with the CFS Service at Belfast City Hospital - surely it is better to have dialogue, make our views and concerns known in an adult and mature way, rather than agitate and antagonise - we feel it is better to act in a responsible manner, with some sort of credibility; The CFS Service is also fully aware of the NI MEA views on CBT and GET, and that the only treatment that the NI MEA supports is PACING.


• The NI MEA supports and, where finances permit, contributes to the on-going biomedical research taking place in the UK. It also has regular contact with MERUK - formally MERGE.


• The NI MEA has made it patently clear that it feels funding should be channelled into biomedical research and not psychological. This view is made clear on our website and elsewhere on this blog.


• The NI MEA has spent many years campaigning for even 1 Full Specialist Facility for ME patients. This Campaign continues despite rejections and disappointments during those years.

• The NI MEA is also campaigning for a proper Adolescent Facility in addition to an Adult Facility.

• The NI MEA is fully aware of just how much still has to be achieved regarding this illness, the total lack of provision, the scepticism still prevalent in some circles, the total lack of NHS funding and the need for immediate action. To this end the NI MEA has met recently with the Health Committee at Stormont, the Chief Medical Officer for Northern Ireland, and has been trying, without success to date, in getting a meeting with ANY of the Health Ministers throughout the years. However, the NI MEA continues to actively pursue all concerned.


• The NI MEA does not blame others for the NHS refusal to fund ME Services, and the current Health Minister for not giving serious attention to ME.


• The NI MEA now receives some Core Funding from the Department of Health, Social Services & Public Safety to run the Administration Office. This came about after many years hard work and ceaseless attempts to obtain this funding. Because of this, we can now pass on the benefits of funding to our members - see below.*


• There are no "strings attached" to the funding - it is given on merit for the work being undertaken by the NI MEA.


• Because of the Core Funding from the DHSS&PS the NI MEA can now offer FREE membership for life *


• The NI MEA offers all its services FREE *

FREE Services include :-

• Full access to the NI MEA Medical Advisor (Consultant Physician who ran an ME Clinic in one of London's leading Hospitals for many years)
• Full access to the NI MEA Benefits Advisor (a local expert in all of the Benefits systems)
• Full access to the NI MEA Paediatric Advisor (a local Consultant Paediatrician)
• Full access to the NI MEA Education Advisor (an expert in Special Educational Needs, and Statementing, and is a Tutor for the OU in Teacher Training)
• Benefits Application Packs
• Benefits Appeals Packs
• Specialist Medical Packs for GPs, Consultants etc
• Specialist Education Packs for Schools and colleges
• Support Networks throughout NI
• Children & Teens Support Network throughout NI
• Young Adults Support Network throughout NI
• Parents Support Network throughout NI
• Quarterly Newsletter
• Extensive Range Information Leaflets and Brochures
• Booklets for Children and Teens

These services cost the ME patient nothing - all they need to do is contact the NI MEA by:-
Information Line (24 hours) Tel: (028) 90 439831 (Leave your name and address)
email: jo@nimea.org
website: www.nimea.org and fill in the on-line Enquiry application.

These are the real facts about the NI MEA. We are here to help where we can, when we can and in whatever way we can.

The Northern Ireland ME Association - HERE FOR ME AND YOU

FULL Blog reply from NI MEA to Ian McIlroy on UTV Life blog

The following is the FULL reply which the NI MEA submitted to the UTV LIfe blog on Tuesday 15th April in answer to the post made by Ian McIlroy. Somehow, this full version, which had been posted by the NI Administrator, did not appear on the blog as it had been orginally submitted.

In his long post, Ian McIlroy forgot to mention that he is a member of a rival ME charity, with an axe to grind, and something to gain from knocking NI MEA.

He is aggrieved that NI MEA receives DOH funding, and his organization does not. Funding is available to those who lobby for it. NI MEA lobbied at Government Buildings once in October and twice in November, including briefings to the CMO and the Assembly Health Committee. When was your organization last at Stormont, Ian?

Ian is angry and frustrated that NI MEA would not advertise on behalf of Dr. Derek Enlander. Dr. Enlander is a distinguished Ulsterman based at a famous New York Hospital. As a research lecturer, he is most welcome. However while he is in Belfast for a short period, Dr. Enlander
proposes to see patients. Some questions arise: does he intend to actually treat patients; if so how will he supervise their continuing care from 3000 miles away; and will his own regime conflict with a patient’s current NHS treatment? With such uncertainties, there can be no immediate endorsement from NI MEA for any visiting doctor.

Ian is upset that we invited a psychiatrist to a doctors’ conference at Lagan Valley Island last year. Now let’s get real here. He’s the consultant in charge of the Belfast ME clinic. Do you think the doctors in the audience wouldn’t have missed him if he had been excluded? Fine start to a conference that would have been. Our speakers included Drs. Willie Weir and Jonathan Kerr, both from London, and both leading opponents of the psychiatric model of ME.

But whoops! - Ian forgot to mention those details also.

NIMEA committee members are all patients, all volunteers, and are all ill. Our work is always achieved at the cost of their own health.

When there is anything to be done, there is always a shortage of volunteers to assist. Despite that, our committee members do much good work. After all the work is done, those who were previously “too tired” to help, often receive a burst of energy, and direct venomous criticism at those colleagues who did make the effort. Ian has been rather inactive on the ME front, until yesterday. But now he’s in line for a black belt - as an armchair critic.

Jo Calder.

Administrator,

NIMEA.

Reply Posted By NI MEA on UTV LIfe Blogpage

This is the reply I put on the UTV Life Blogpage this afternoon on behalf of the NI MEA.

Ken Hull did not advocate CBT and GET as treatments for ME, during his UTV interview. Those who want the facts will find a transcript of the programme at http://nimea-ni.blogspot.com/.

NIMEA opposed psychiatric management of ME in its submission to the Belfast CMO in November, and were among the first of the UK ME charities to reject the main NICE recommendations, (see the NIMEA blog). But some of our critics aren’t really interested in facts.

Ulster ME charities who attack the BCH CFS clinic are hypocritical. All of them have members who attend that same clinic in large numbers. In fact, there is always a waiting list. NIMEA itself has members who are strongly opposed to the siting of the clinic within Windsor House, some who don’t mind, and some who fall between.

We are a mature organization; we respect diversity of opinion; and we responsibly reflect the full spectrum of views within our membership. The decision to attend, or not to attend the BCH clinic is one for the patient. NIMEA fully respect and defend the rights of individual patients to make their choices. There are other advocates who seem to want to impose their own preferences on the entire ME community.

We do receive complaints about the BCH clinic, but none about the Senior Occupational Therapist in charge of treatment. Many NIMEA patient members have warm praise for her. We have independent evidence that friendliness and mutual respect are the hallmarks of her relationship with her ME clients. She is the only NHS-funded specialist for ME in Northern Ireland. She is a valuable asset, and we need many more NHS staff like her. She has our full support.

Jo Calder,
Administrator,
NI MEA.

Transcript of ME Article on UTV Life

Mrs Antoinette Christie (Parent & Carer of a teenage ME patient) and Mr Ken Hull (Chairman, NI MEA) got a 5 minute slot on Ulster Television's "UTV Life" at 5.30PM on Wednesday 9th April 2008.

At times both Antoinette and Ken were indistinct, and the transcriber had to use headphones for the soundtrack. It has been edited for brevity and clarity, punctuation has been added, and repetition deleted. Explanatory notes are added, in brackets.

Transcript.

A Belfast boy hasn't been to school for nearly 5 years. His parents are desperate for help.

A mother whose teenage son has ME, is paying an American doctor to treat him, because she says he's not getting enough medical attention locally.

Antoinette Christie says she's asked the Health Minister to fund biomedical research into the condition, but he's refused.

Letitia's been to meet her.

Letitia "David Christie, who's 15, has suffered from ME for years, and hasn't been to school since he was eleven and a half. He sleeps from 5 in the morning until 5 in the afternoon; and can rarely get out of bed when he is awake. ME, also known as Chronic Fatigue Syndrome, affects the immune and central nervous systems.

"David used to be active. He was a Ju Jitsu champion, and a keen rock climber and Boy Scout. Now his bedroom is his prison, and his mother is at her wit's end".

Antoinette " We're emotionally drained. David doesn't have a life. Today you look outside and see the sun, and David should be out at school. David's just been left, a prisoner in his own wee home".

Letitia "And how do you want ME to be treated by the government here?"

Antoinette " I want it to be funded. The Government's not funding it".

"I have personally written to Michael McGimpsey (The Northern Ireland Minister for Health) and got a reply from him. I've also written to Michael McBride (The Northern Ireland CMO), basically saying that they will not fund biomedical research into ME".

Letitia "How do they treat ME?"

Antionette " Psychiatric"

Letitia "And your contention is it's not a psychiatric condition".

Antoinette " We live with it. We know David didn't just get up one day, suddenly take sick and say 'Right, I'm not going back to school'. anybody who is depressed, doesn't want to do anything. You ask any ME sufferer - they want to do things. They can't - they're physically ill".

Letitia "There's no cure for ME and the effect on families is huge. David's parents haven't had a full night's sleep in 3 years and they can never take holidays. They are so desperate for help that they are paying for David to see an ME specialist from New York. Dr Derek Enlander, who will be in England for a conference in May, is flying to Northern Ireland to see more than a dozen ME sufferers".

"The Department of Health says:

* It provides annual funding to the Northern Ireland ME Association

* No specific funding is allocated for ME sufferers

* Patients have access to a range of services based on a clinical assessment of their need

* A range of treatment and support options are available, and those delivered will depend on the patient's specific symptoms and their severity"

UTV interviewer: "and we are joined now by Ken Hull, who chairs the Northern Ireland ME Association. We've heard a lot over the years about ME, Ken, but it stills seems to be a very misunderstood illness".

Ken Hull " It's still looked upon by some people as "Yuppie Flu", and some patients are accused of malingering. 7000 have it in Northern Ireland, and suffer to different degrees. Some like that young chap are bedbound, and others are just not able to function normally".

"It has not been taken seriously enough until comparatively recently, when the Chief Medical Officer took it on board. It's now looked upon by the National Institute of Clinical Excellence as an important entity".

Frank Mitchell, UTV " Yes it's been taken seriously now. Getting the funding, I suppose, is always the difficulty. The first symptoms of it are.....?"

Ken Hull " "Flu-type symptoms. You can't function; you find it difficult, say, to go upstairs; and difficult to remember things. Really, it's like having a permanent flu. You just can't get over it. You think one day you are better, and the next day you find you are worse. If you over-exert, it sets you back for weeks".

Frank Mitchell "Antoinette spoke about seeing a medical specialist from New York. What will he be able to tell her, or do for David that can't be done here?"

Ken Hull " I wouldn't be sure about that. People will try anything. Some ME patients spend a fortune on possible remedies. It's not often clear what the effects of these are".

"(In the NHS) patients are taught graded exercises, which helps some people, but doesn't help everyone; and there is cognitive therapy".

"I should say there is a clinic in Belfast at the City Hospital, run by an occupational therapist, who does an excellent job. But you find she is only part time".

"Originally patients came to Belfast from as far away as Enniskillen and Omagh. But now she's so snowed under that she can just take local referrals".

Frank Mitchell " Yes, it seems like the poor cousin to so many other illnesses. again, thanks for joining us this evening. Thank you".

Ken Hull "Not at all. Thank you".

Transcript ends.

Just as an observation, perhaps if the NI MEA had been allocated a little more air-time, our Representative could have had the opportunity to expand on several of the issues that had been supplied to UTV prior to the programme being compiled.

And, at no time did the NI MEA advocate either CBT or GET as a preferred option for treatment.

NI MEA Response to UTV Life Slot on ME 9th April 2008.

This statement was issued to UTV Life early on Tuesday morning, 8th April outlining the views of the NI MEA in relation to biomedical research.

The NI MEA has 3 priorities for ME patients in Northern Ireland:

1.The provision of basis NHS Services


2. Specialist support for the severely ill housebound


3. Research funding to find a cure.



1. Inadequate basic services.

There are 7000 ME patients in NI, but NHS support is totally inadequate, especially west of the Bann. There is a lack of local NHS expertise in ME, and GPs and patients in Ulster are left to struggle on as best they can.

In the whole of Ulster there is only one specially-trained member of staff to cope - an Occupational Therapist based at Belfast City Hospital.

An NHS national plan for ME services was published in the UK in 2007, and had been with Minister McGimpsey since last August. In November he promised NI MEA that he would produce plans for local Ulster services in December 2007. His recommendations have yet to appear.

2. The Severely Ill.

NI MEA has many families left to cope alone with a severely-ill child. Mothers have to provide 24-hour cover, unassisted, which severely disrupts family life.

The NHS strategy published last August stipulated that these families must receive adequate home support from doctors, nurses, Social Security and the Benefits Agency. These services will be expensive, and Minister McGimpsey must start dipping his hand into his pocket

3. Research for a cure.

Unfortunately there is no cure for ME, and no effective treatment. The UK NHS planof 2007 offer only coping strategies for ME patients.

Like all other ME charities in the UK, the NI MEA believes there must be a more active search for a cure. We are disappointed that almost all Government research funding has been directed into psychiatric research, and the only treatments offered are psychological coping strategies.

More focused research is being carried out by a number of Ulster doctors. A cure is being pursued by Dr Derek Enlander (ex Belfast) at Mount Sinai Hospital, New York; Dr Jonathan Kerr (ex Belfast) at St George’s Hospital, London; and by Dr Vance Spence (ex Strabane) at Dundee University.

These Ulster doctors are researching the biological causes of ME, in hopes of finding a cure. Dr Kerr, for instance, has found that ME patients have an abnormal gene profile, which may respond to treatment. Unfortuately these doctors receive no Government funding, and their research is paid for by patients themselves.

NI MEA strongly believes that the focus of NHS treatment and research for ME must shift from the psychological to the biomedical.

NI MEA 8th April 2008"
(Statment ends)


Additional Comments from the NI MEA:

• The NI MEA wants research for a cure and of course prefers biomedical.

• The potential problem with any Ulster-based research proposals seems to be that most of the world-class Ulster ME researchers already have permanent posts elsewhere.

• As biomedical research is currently being done in the UK, the NI MEA feels a more immediate realistic priority for us is to seek basic NHS treatment services on the ground in Northern Ireland.

• The NI MEA of course supports biomedical researchers like Vance spence, and NI MEA members contribute to MERUK.

The NI MEA applauds any and all funding raised and fundrasing efforts undertaken in Northern Ireland for biomedical research.

NI MEA Representative to speak on UTV on Wednesday 9th april 2008

Mr Ken Hull, Chair, Northern Ireland ME Association is due to speak about the work of the local Association, provision for ME patients in the Province, and Biomedical Research. The programme is due to go on air from 5.30PM on Wednesday 9th april 2008.