NI MEA – 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 it 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 it 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 affected 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 this website, and on the NI MEA blog – http://nimea-ni.blogspot.com
• The NI MEA has consistently made it clear that it does not advocate either Cognitive Behavioural therapy (CBT) or Graded Exercise Therapy (GET), again this has been stated on this website and the 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, 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. However, this does NOT mean that there is not help, certain treatments and management for the illness.
• The NI MEA does not advocate any form of particular treatment per se – 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, and decide what is best themselves.
• 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 – formerly MERGE.
• The NI MEA has made it patently clear before on this website and our blog, and now again, that it feels funding should be channelled into biomedical research and not psychological.
• 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 funding we can now pass on the benefits 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 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 years)
• Full access to the NI MEA Paediatric Advisor (a local Consultant Paediatrician)
• Full access to the NI MEA Benefits Advisor (a local expert in all of the Benefits systems)
• Full access to the NI MEA Education Advisor (a local 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 and Consultants
• Specialist Educational Packs for Schools and Colleges
• Support Networks throughout Northern Ireland
• Children and Teens Support Network throughout Northern Ireland
• Young Adults support Network throughout Northern Ireland
• Parents Support Network throughout Northern Ireland
• Quarterly Newsletter
• Extensive range of 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:

The Information Line (24 hours)
Tel: (028) 90 439831 (Please leave your name and address)

email:jo@nimea.org
Or use the on-line Enquiry Form to join.

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 YOU AND ME