Minutes from Poole & Bournemouth Transverse Myelitis Support Group Meeting
27th October 2007 at 2pm, St George’s Hall, Oakdale, Poole

Present: Mary & Andrew Bergin, Teresa Bryant, Christine Francies, Lance & Angela Harris, Louise Higgs, Barbara & Barrie Houston, Sue Hyatt, Enid & Ted Jones, Mike Jones, Malcolm Plested, Peter Poll, Sally & Sean Rodohan, Barbara Sadler, Francesca Stanford, Judy Stanford, Yvonne Trapp, Kathleen Vincent, Graham & June Ward, Jean Wright, and Robin & Val Young

Apologies: Hilary Barefoot, Andy Berry, Frank Devine, Connie and Phil King, Alan and Gill Rowe, and Mike and Beverley Tankard

Teresa opened the meeting by welcoming new members, Lance & Angela Harris, Enid & Ted Jones, Jean Wright and Christine Francies.
Lance, who lives in Bournemouth, had TM 32 years ago, followed by a second attack in more recent years. This is the first time he has met anyone else with TM. Enid, who lives in Frome, had TM 2 years ago. Jean is the wife of Roy, and Christine is their daughter. Roy is currently in Christchurch hospital following an attack of TM in August.
Sally and Sean Rodohan were down from London – Sally is the Chair of the TMS.

Although it had been planned that Val Mitchell would be speaking at today’s meeting, it was decided to delay this so that the time could be dedicated to the report from the London Conference. She will therefore be invited to come at a future date.
The group was asked for ideas for guest speakers – suggestions made were an Occupational Therapist, a Yoga Therapist, and possibly Dr Hillier again.

The London Conference
This had been generally very successful, and for many delegates it had been the first time they had met any fellow sufferers. They had come from far and wide – including Australia, Italy and Ireland, as well as across the UK. Simon Kolesar chaired the day. Sally gave a presentation, explaining how the TMS had been formed in this country. She explained how it has been in existence a very short time – there had been no support before then, but in the past 3-4 years, many links had been formed. At the conference, Sally urged more support groups be formed, and explained how having someone to talk to who understands makes such a difference. (Incidentally our own support group, which is 2 years old today, already has 44 contacts).
Doug Kerr had been a very easy person to listen to, and understand. Apparently, TM was first documented in 1860, in London. It was reported as ‘an acute infection followed by weakness’. In the 1920s there was an epidemic of TM in the UK following smallpox vaccinations, but the same did not occur in Europe. It transpired that a different vaccine was being used. Dr Kerr pointed out that TM sufferers should not be wary of vaccinations – the advantages of being vaccinated outweighed the risk of not being vaccinated.
He stated that TM is monophasic (a one-off attack), and monofocal(in one place). MS is multiphasic and multifocal. TM and MS are closely linked, but distinctly different.
In TM, different areas of inflammation effect different parts of the body, e.g., cervical, thoracic, lumbar. Regarding treatment, in the USA IV steroids are administered, and plasma exchange is used. However, in the UK, plasma exchange is not used. (This is an area for investigation, and Lew is looking into it).
Dr Kerr stressed the importance of rehab and physio. Again, in the States, this is routine, but not in the UK. He pointed out that we must always be pushing ourselves further – a small gain in rehab can make a great difference. We should keep up exercise regularly – use it or lose it. Swimming is a good exercise, and stretching helps with spasms.
Lesions can shrink, or even go away, but if inflammation is still present, the immune system will continue to attack the chord.
In the USA MRI scans are routinely repeated, and patients are always followed-up. Research includes studying Protein IL6, which is always high in the acute stage of TM, and stem cell research. Stem cell research offers great hope for the future. Trials on people should begin in the next 18months.
Depression is a symptom of TM, not a reaction. It is triggered by TM.  It is due to a chemical imbalance, and therefore needs treating. Stress is detrimental to recovery.
Professor Vincent then spoke. However, she spoke above everyone’s heads. She is conducting autoimmune system research. She had never met a patient with TM until that day! However, she would be interested in naming Oxford as a TM base, which will allow continuation. She will link well with Dr Kerr, who already knew her.
TM is as a result of the spinal chord being attacked by the autoimmune system, but why?

In the afternoon, Diane Play ford, a neurorehab consultant, spoke. In the UK, we are not getting the right treatment. There should be a team of care, with possibly a TM nurse specialist.

The day concluded with Tony Murphy, from PALS. He was an amusing speaker, but was not totally relevant.

Teresa concluded that it had been an excellent, informative day.
We should learn as much as we can from each other, after all we are the experts. Many doctors do not know anything about it.
The internet has made links possible, and raises awareness.

AOB
Discussion among the group then ensued. The question of recurrent and deteriorating TM was raised. The question of how long it took to see a consultant neurologist was debated, with some focus on whether a good GP could speed appointments up.
The MS group had had a speaker regarding research, which Yvonne had attended. Neuroprotectors were mentioned, which apparently are contained in Statin, a medication used to lower cholesterol. However, there was mixed reaction regarding its usefulness.
Graham mentioned that he was getting pain relief by using Gabapentin and Morphine together.

Cards were on sale from Val Young, and Sally had brought down Christmas Cards for sale.
Teresa had left a handout from the London speakers available for perusal, with a request slip for those wishing to obtain a copy.
Yvonne brought MS booklets for members to look at.

For the remainder of the meeting there was informal chat with tea and the drawing of the raffle.

The next meeting will be on Sat 26th January at 2pm.

The meeting closed at 3.55pm.
(Members can obtain the London speakers’ slides through Barbara Houston via e-mail).