The Northern Ireland ME Association - NI MEA

The Northern Ireland ME Association (NI MEA) has decided to issue a statement regarding the Association, its views, aims and objectives, in an attempt to clarify what it does and what it hopes to achieve.

Unfortunately this has become necessary as, during the past few months, there has been some minor agitation taking place within the internet ME Community aimed at the NI MEA.

Until now, the Association had remained silent on these attempts to misconstrue what the organisation has been doing, and what its views are on the treatment of ME and the lack of facilities here in Northern Ireland.

However, the Association is hoping that by stating the facts clearly, it will help to put paid to the “half –truths” and deliberate selective dissection of statements issued by the NI MEA.

• The NI MEA works within Northern Ireland only – whilst we maintain contact with UK ME groups and Associations, we are not answerable to any other organisation or Group, either in the UK, the Republic of Ireland, Europe, or indeed throughout the rest of the world. We feel that we have better knowledge and are more aware of the workings of our own local region than others who live outside the Province, and it seems quite presumptuous for other organisations to tell us what we should and should not do, think or say.



• Neither does the NI MEA feel it should be commenting on what other ME Charities or Groups should do, say or think, and has always refrained from involving the Association in this sort of unsavoury practice.
  


• The NI MEA is NOT and never has been a group. We are a fully constituted charity registered in Northern Ireland; a bona fide organisation working solely on behalf of those with ME here, and indeed the only such Charity in the Province doing this. Whilst we accept that there are other conditions that have Chronic Fatigue as part of their illness, we feel that we should first concentrate our efforts on fighting the corner for those with ME.

• The NI MEA Committee are all volunteers, they do not get paid for the work they undertake on behalf of the NI MEA.

• Our name is the Northern Ireland ME Association – the ME stands for Myalgic Encephalomyelitis – our views are in our name. We have never adopted the Chronic Fatigue Syndrome attachment, we do not use the term CFS when we as an organisation are talking about this illness, neither have we ever used the CFS/ME or the ME/CFS mantle in our name, nor joined the current idea of using the “Encephalopathy” tag which has become popular with some ME Charities.

• The NI MEA has a cordial professional relationship with the CFS Service which operates out of the Belfast City Hospital. The Association feels that this allows it to be kept aware of what the Service offers, and gives it an opportunity to develop approaches and ideas.

• However, The NI MEA has always stated that the CFS Clinic is not what it would regard as a full, proper, diagnostic facility – we have been campaigning now for 20 years for a full specialist facility. In recent years that campaign has been widened to include the same facility for children and young people, and this was raised again with the CMO for Northern Ireland at our most recent meeting earlier this month.



• The NI MEA does not advise anyone with ME to attend the CFS clinic in Belfast – but we respect their decision to do so if they feel it is of benefit to them as an individual. ME is, after all, a very individual illness. Neither do we advise anyone, one way or the other, to undertake any particular therapy, either sensible or fanciful – we provide patients with the information, and then allow them to exercise their common sense and intelligence to decide. We still believe in each person’s freedom of choice.



• The NI MEA does not endorse the NICE guidelines regarding the recommendations on CBT and GET. We have made this stance known from the beginning. We have described them as of limited efficacy, with known adverse effects, and as being unpopular with patients.



• The NI MEA does not accept the psychogenic model of ME. We have always stated that ME is not “all in the mind”. It is a physical illness. This is made patently clear on the blogs already posted.



• The NI MEA has always supported biomedical research as the first best option for the diagnosis and treatment of ME. It has given funds to a UK ME charity currently undertaking biomedical research.

• The NI MEA does not feel it is productive to antagonise the general Medical Profession, but neither does it feel it has to comply with all views emanating from the wider Medical Profession.

In almost 20 years since the Association was first established, the aims and objectives have remained the same:

Raise awareness of ME

Locate and support all affected by ME in any way

Liaise with Medical and Educational Professionals on all aspects of ME and its ramifications on those who have the illness

Promote and support medical, educational and social welfare research relevant to ME

Campaign for both Adult and Adolescent dedicated Specialist Facilities in Northern Ireland

Disseminate information to the general public, professional bodies and benefits agencies

The NI MEA would hope that this statement will now clear up any misconceptions – either intentional or unintentional – and we can get on with the tasks that are of most importance to the Association and to those we work on behalf of, the ME patients in Northern Ireland.