#InvisibleME Symposium - Belfast

Maeve Hully Chief Executive
of the Patient and Client Council
(All photos by Horace Reid)

This meeting took place in Riddel Hall, Belfast, on Monday 23rd February at 6.30pm. Details of the background to the meeting can be found HERE.

After registration and a buffet supper the meeting was opened by Maeve Hully, the Chief Executive of the Patient and Client Council. Maeve outlined some of the background to the meeting including a description of Martina Marks’ passionate plea to the Patient & Client Council. It was this plea that put ME and Fibromyalgia firmly on the PCC agenda.

Jim Wells MLA. Minister for Health 

Maeve then handed over to Jim Wells MLA, Northern Ireland's Minister for Health, Social Services and Public Safety.  Mr Wells described how the experience of watching a friend of his fall ill with ME, and in doing so change from being an active outgoing and busy individual to one confined mostly to her home, had influenced his view on the real and physical nature of the problem. He spoke about his involvement with the ME patient community and how he has in the past supported events run by the Newry and Mourne ME Fibromyalgia Support Group.  He recognised the need for improvements in patient care in N.Ireland.

Lorna Bryson

The first group of patients were then called to give their testimonies.

First up, Lorna Bryson gave her account of growing up as a teenager with ME and being told by doctors that she was making things up to avoid going to school!  She described the frustration of the brain fog that prevented her from reading or writing. She spoke without notes, straight from the heart, and the audience was visibly moved. Her final words, on being denied stronger pain-killers because of her young age, was harrowing but she carried it off with dignity and admirable strength.

Samantha Knox and her partner Paul
await their turn to speak. Eloise also
said "Hello"!

Next, young couple Samantha Knox and her partner Paul took turns tell their story. Samantha became ill with fibromyalgia after the birth of their daughter, and at first all her problems were put down to either baby blues or post natal depression.   Paul then spoke very movingly about how he couldn't understand how every day she seemed to be hurting in a different place, and that at first he had believed the doctors when they said it was all in Samantha's head! In fact he left her as a result of the stress of the situation. As these two spoke it became clear that they were now very much working together to cope with their own difficult situation and also in their demand for better recognition and treatments for fibromyalgia.

There can be no doubt that these illnesses change lives.

Me - Sally Burch - saying my bit.

Indeed that was the theme for my presentation.  I described my life both before and after the onset of ME and made a plea for better care.  I did a practice run at home have shared it on YouTube HERE in the hope that it might be useful to others.

Margaret Peacock spoke next, and described how there were two Margarets - the one before Fibro and the one afterwards.  She spoke about how she set up Fibromyalgia Support Northern Ireland to provide a sympathetic network of patient support meetings in the face of so little real care.

Last in this group of patients was to be Thomas McParland, Joan McParland’s husband and carer.  However on finding himself feeling too emotional to speak on the night, Fiona McLaughlin kindly stepped in to read his moving account of the seven years Joan spent in bed, and the harrowing times they had when professionals (that should have been helping them) declared that she was making everything up! Having not heard Joan’s full story, I found this testimony particularly emotional to hear.

Patient testimonies made a clear impact on the audience

At this point in the evening, I retired to a quiet alcove in the old part of Riddel Hall to lie down on a convenient couch and close my eyes.  My husband Tim, returned to the meeting and I've used his notes and the accounts of others to fill in details of the remainder of the night.

Iain Deboys Commissioning Officer
for the Health and Social Care Board

Next to speak was Iain Deboys Commissioning Officer for the Health and Social Care Board.  It was very clear that he had been moved by the patient testimonies, and that he appeared to agree that care in N.Ireland was decidedly lacking. He also said he recognised that there was a problem getting GPs to read and implement guidelines about these conditions. His solution was to suggest an expansion of a Condition Management Programme (CMP) that has been trialed by the Northern Trust.

He said that his team had visited the Lothian ME/CFS service in Scotland, and that he felt that this model should be used as the basis for the service provided in Northern Ireland, indeed the CMP was following that model. He spoke about a two hundred and fifty thousand pound investment for services as being "a start". He brought two speakers, Rosalind McLaughlin and Sinead King to describe the CMP, and they gave an account of the 12 session programme that offers lifestyle advice and management techniques for coping with illness.

Note: This is not a service model that could be supported by the charities in attendance at the meeting.  The fact that the Lothian service is clearly based on the theoretical psychiatric bio-psycho-social model of the illness makes it entirely inappropriate for patients with an organic disease.

My own view, no doubt echoed by the majority of patients, is that a programme like this might be somewhat useful, but only after patients have been properly assessed, diagnosed and treated by a medical expert, such as could be found at a specialist clinic led by a consultant physician who has a special interest in the physical nature of ME and Fibromyalgia.

These three speakers did not stay after their presentations and left immediately, without taking questions from the floor. However, I am at liberty to share with you that Joan McParland, Antoinette Christie and Jeannette Marley followed Mr Deboys out the door to put their questions to him in the corridor!  Joan had had the foresight to bring a sheet of typed out questions with her, which she handed to Mr Deboys, requesting that he make a written reply.  She also demanded that the Northern Trust claims that, “many people” have gone back to work after completing the condition management programme, be removed from online descriptions of the programme.  She told Mr Deboys that she had Freedom of Information replies that clearly demonstrated the fact that only ONE person had returned to full-time employment to date!  He agreed that the word “many” should be deleted.

After that excitement the next to speak was Dr Pamela Bell of the Pain Alliance of Northern Ireland. She spoke only briefly, cutting her presentation short to allow the meeting schedule to catch up. She emphasised the dilemma of misdiagnosis, but expressed hope for the future.  Her presentation slides (and those of other speakers) have now been made available on the Patient & Client Council page HERE.

Dr William Weir spoke in considerable detail about ME and this short summary does not do his presentation justice. He delved into some of the history of ME and outlined some of the current research findings that all point to an organic cause for ME.  He believes that a viral aetiology will eventually be demonstrated for the illness, and he also praised the work of Professor Mark VanNess. He further explained that the PACE trial was now regarded as a failed study.  He voiced the opinion that the Northern Trust pilot, based on the PACE trial methods, was not taking the right route. He said that for good practice, a clinic would be to need to be led by a consultant physician, and not led by either an occupational therapist nor a physiotherapist. He clearly stated that promoting the psychological approach for ME was counter-productive.

Keith Anderson
Specialist Nurse, Scotland

Keith Anderson the Specialist Nurse for ME, chronic fatigue and fibromyalgia from Scotland spoke next.  He described how his clinic was set up in 2004, and how it had built over the years by offering referred patients sympathetic support and guidance on symptom management. He talked about being able to visit the most ill at home, and also how he could help with DLA and ESA appeals. His presentation was so warmly received that some-one from the floor asked him to move to Northern Ireland!

The next group of patients were then called to the floor to give their testimonies.  There was some disappointment voiced that these patients would not be heard by key decision makers who had now left for the night.

Martina Marks

Martina Marks has both ME and Fibromyalgia. She explained how she first became ill in 1997 after a car accident. She didn't get a diagnosis until 2005 when she was told she had Fibromyalgia, but even then she got no support or advice and was left confused and isolated.  By 2009 her symptoms began to change and at one point she became housebound for a period of 3 months, yet her GP made her feel like she was wasting his time. It was only when she found the Newry and Mourne ME Fibromyalgia Support Group in 2011 that she finally felt some hope.  She finally consulted Dr Weir privately and was told that she also had ME. She feels that a specialist here in Northern Ireland is essential, because early diagnosis gives the best prognosis.

Anne Smyth told her story about 30 years of illness with ME.  She explained that she had been working as a social worker when she became ill that she spent 14 months bedbound - an agonising time when there was no care or intervention available to her.  Although she improved, she has had four major relapses and felt she has missed out on life.  She found the support offered by charity ME Support Northern Ireland invaluable because 30 years on there is still "a huge level of ignorance".

Antoinette Christie speaking with Catherine Burrell and
Anne Smyth listening after their own testimonies.

Catherine Burrell became ill with ME in 1999 when she was only 18 and although she recovered to some degree she then relapsed in 2005 and has now been moderate to severe for the past 10 years.  She explained how post exertional malaise causes her many distressing symptoms, and how she describes the fatigue as if a "vacuum was sucking out every ounce of energy".  Even social interactions leave her struggling and often bedbound for days afterwards.

Last to speak was Antoinette Christie the chair of ME Support Northern Ireland. She described the horror of having her youngest son fall to ME aged eleven.  At the time she was advised to keep him doing normal things, and so he continued to walk three miles to and from school each day, until one day he could do it no more!  From that day, he ended up bed bound for four and a half years!  Antoinette described how her son effectively returned to being a baby, and  how each morning she would look into his room hoping he had survived the night! She explained then the shock she experienced when reaching out for help only to find there was none!

Only a parent can understand this sort of terror she said! It was this that led her to form ME Support Northern Ireland, and to start fundraising for biomedical research into the illness. She concluded by pointing out the need for services for the most severely affected and also the need to educate schools and Welfare Officers about the severity of ME.

Heather Moorhead, NI Confederation
for Health and Social Care

Heather Moorhead then took the chair.  She said that because the evening had over run on time there would be no round-table discussions, but she acknowledged the harrowing stories and asked the audience for their priorities and ideas for the Patient and Client Council campaign.

A number of patients expressed disappointment at this and so Heather extended the meeting to accommodate some discussion.

A question was raised about how services are commissioned, and it was agreed that although Jim Wells would set policy that it was the Health and Social Care Board that made decisions - however there needed to be greater clarification of the commissioning process.

Another voice from the floor asked about how to better educate GPs and in particular whether they should have more of a duty to educate themselves. It was agreed that a campaign of awareness aimed at GPs was a priority.

Another patient claimed that Northern Ireland was currently the worst country in which to have ME, she spoke about current medical ignorance and made a plea for a consultant led service.  She said it would not do to say that Northern Ireland did not have anyone suitably qualified, because we should be sending professionals to America to learn from expert consultants already working in the field.

Margaret Peacock spoke of the need for more support for patients, and more awareness of where patients could go for help.

A question was asked about whether there was a legal requirement for including these illnesses in GP training programmes, to prevent another generation of medical professionals who haven't got a clue!

Then a patient asked about the HSCB remit to adhere to NICE guidelines for the provision of a consultant led service. Apparently Iain Deboys had promised this consultant led service in 2012, but had being claiming lack of finance as an excuse for poor services since 2008.  The speaker gave figures of spending in other areas of health and suggested that there was now a "discriminatory pattern of expenditure".

A couple of different people called for disciplinary action against doctors and professionals who showed skepticism of ME and Fibromyalgia as real illnesses.  This idea received applause.

A question was asked about the offer of two scholarships to train registrars at the Mt Sinai Clinic with Dr Enlander. Why was this generous offer not taken up?

Further discussion arose around the need for international speakers to help educate our professionals, and also the need for better communication strategies to encourage attendance at events.

Wrapping the evening up Heather gave thanks to the various speakers, and the patients who had shared their stories.  She explained that the next step would be a meeting of the Steering Group which included members of the participating charities, and that these issues would be looked at to find a way to take the initiative forwards.

Whilst I missed much of the action at the time, I hope that this give a reasonable record of events on the night.  Thanks to Tim Burch, Joan McParland, Horace Reid and Ian McIlroy for their assistance with this report.

Post giving some background on N.Irish situation.