Dr Enlander spoke about ME and possible treatments at the Lansdowne Court Hotel, Belfast on Thurs evening March 1st.The event was organised by MEANI(recently formed ME Group/N.Ireland). Dr William R C Weir (consultant physician/retired?/FRCP (Lond) FRCP (Edin)). chaired the evening event.It was expected up to 250 ME patients/family may attend but it happened that 400-500 people attended.The demand was such that many people had to stand.The ME Group in Dublin were represented and patients travelled too from Wicklow(one in a wheelchair) and other parts of Ireland.
Dr Enlander emphasised that ME is a Physical illness.He said too, that that any psychiatric component was only secondary but that a multidimensonal approach was required.Dr Peter White had been invited to the event by Dr Enlander but he didnt come.Horace Reid(ME sufferer/MEANI)spoke too about how poorly ME was dealt with by NICE/Govt in N.Ireland.There has been a history of Clinics opening/closing...It is so bad now that as far as I understand it there is no ME clinic at all.That has been my own experience.The only thing offered here to ME patients was CBT/GET.......that is if they had managed to get an ME diagnosis.In many cases that is not possible.There are still doctors here who dont believe in ME...and there is a great need for better Education re doctor training(Medical School).Dr Enlander announced during the evening that two Fellowships were to be offered to young doctors(from N.Ireland?)to train/do research work under the guidance of Dr Eric Schadt(PhD, is Director of the Institute for Genomics and Multiscale Biology, Chair of the Department of Genetics and Genomics Sciences and the Jean C. and James W. Crystal Professor of Genomics.)at the Mount Sinai Clinic in New York.The funding of this is still be worked out(I think).Dr Enlanders presentation was excellent and some selected questions(by Dr Weir) were answered before a halt was called to the proceedings.Mr Jim Wells(MLA/DUP) and Mr Basil Mc Crea(MLA/UUP)were also present.Mr Wells who may be a future Health Minister here mentioned how Mr Poots(present Health Minister/NI) has a family member with ME.He also mentioned a young doctor(Alison)who worked at the Royal Victoria Hospital/Belfast who now has ME and how her life has suffered accordingly. Jacqueline Mc Gorrian (MEANI) also spoke about her son Andrews tragic (ME) case.Andrew is bedbound with his ME and unable to attend school.Dr Jay Wiggan lecturer in Social policy and Administration at Queens University/Belfast was also present.He spoke about his work (Examining the experience of people with ME/CFS in N.Ireland during a period of welfare reform 2012-14) during the evening and took the names of those who could assist him with his research work.
The next day (Friday) the ME groups were meeting with the N.Ireland Trust/workshp(?).It was mentioned that Dr Enlander had been barred from speaking at that event.If that did happen that is shocking!Hopefully ,as Mr Wells and Mr Mc Crea were present and heard this, that this was overturned and that Dr Enlander was able to speak for ME patients in N.Ireland.( who have never had a voice here.)Horace Reid pointed out too that there are 2,400 MS patients here,4,900 Breast cancer Patients and 7,100+ ME patients.In light of these facts it is time that ME diagnosis/treatments improved for these patients.
Dr Enlander has been invited to speak in London(Mar 6th?) by Countess of Mar(Forward ME)/House of Lords(?)...and he will see his patients there too.
Joan McParland(spokeswomen)/MEANI Group have to be congratulated on bringing Dr Enlander to Ulster to speak on our behalf re this illness(ME).Hopefully the Government/Medical authorities will now listen and provide a better service for ME patients
The above event was videoed/recorded...and Dr Enlander had a session with UTV before he gave his talk/presentation.No UTV links as yet...so unable to post
