Transverse Myelitis Society
Minutes of 5th Meeting of Manchester Support Group 17th October 2005
At the Brain and Spine Injury Charity (BASIC) Neurocare Centre, Eccles New Road, Salford
Note: Email addresses below are for members only, to contact each other – email addresses are not included in the Minutes posted on the website.
Attendees (21): Eileen Anderson and husband Brian (Co. Durham), Gill Arnfield (High Peak), Josephine Brook and husband Martin (Bury), Denise Clark (Barrow-in-Furness), Eileen Conneely (Manchester), Philip Devlin and wife Phyllis (Manchester), Steve Drury and wife Helen (Wallsend Newcastle), Roy Foster (Southport), Lew Gray (London Support Group), Lucy Harrison and husband (Preston), Margaret Hanrahan and husband Joe (Sale), Tony Murphy (PALS Walton Centre Liverpool), John Newman (Eccles), Geoff Treglown (Ambleside), Margaret Shearer (Scottish Support Group)
Apologies received: June Adderley, Sue Clark, Vicky Edwards, Jolene France, Andrea Freedman, Lillian Kneen, Jane Lees, Clare Lloyd, Rodney Markham, Karen Rushworth, Kerry Scott, Tim Warham.
1. Geoff welcomed all to the meeting, explaining that the Manchester Group had met once a year for the past 3 years. If members wanted to meet more often, it could be done if local people would volunteer to organise. Other support groups were in Scotland, Telford, London and now Poole, meeting sometimes on weekends sometimes weekdays.
2. Lew gave out some TM Society leaflets and explained that TMS is now a UK-registered charity, which permits us to reclaim Gift Aid (28%) from Inland Revenue on all donations. The TM Society is raising funds initially to pay for Newsletter distribution for the TM Assoc, instead of our being subsidised by the Americans. The TMS Committee is also trying to make sure we have accurate addresses, phone numbers and emails for all members, improve the website etc.
3. The TMAssoc is selling blue wristbands to raise awareness of TM, and Lew had brought some to the meeting. Margaret said the Scottish Group had sold 250 wristbands so far!
4. Lew had also brought along the Brain & Spine Foundation booklet on TM, and explained this booklet (available FOC) was the best general introduction to TM (for GPs, relatives etc). The NHS was also rolling out an Expert Patient Programme course nationally. This was a 6-session course concentrating on self-management of long term conditions, and was recommended to all members not only for the course content but also for the opportunity to get good local contacts. Lew also briefly explained the new NHS National Service Framework, a 10-year program to improve treatment of long-term neurological conditions.
5. Geoff and Lew reviewed the latest research into TM. Geoff said the goat serum trial had been stopped. (“The manufacturer was cited for misleading advertising about Aimspro on their Web site in July 2004 by the UK Medicines and Healthcare Products Regulatory Agency, and the company responded by removing most of its claims for the product. There is no research evidence or published information available to back up the anecdotal claims about goat serum.” MS Society)
6. Project Restore the new 5-year research programme at Johns Hopkins University (Baltimore USA) had made a significant discovery, which would be in the next TMA Newsletter. Basically the researchers had discovered a single chemical (an immune system market protein named IL-6) in cerebrospinal fluid of TM sufferers which was 300 times normal level. This CSF had triggered demyelination in spinal cells, and also triggered TM in lab animals. Finding the mechanism of the autoimmune attack (TM and maybe MS too) held great promise for finding a drug to interfere with it – if TM could be diagnosed promptly! Stem cells were still the best hope of long-term repair for myelin, and the Johns Hopkins doctors have made good progress with stem cells too. See Project Restore website at www.hopkinsneuro.org/restore
7. There was general discussion of the problems in the health system that the National Service Framework was intended to improve. The lack of rehabilitation services was a big problem. Tony mentioned that the Walton Centre had only 2 rehab specialist neurologists out of a total of 20 neuros. Social Services were also badly under-resourced – one member had been told to wait 14 months for even the first assessment of her need for equipment and house adaptations. Generally everyone felt that provision of these services and neuro services in general was much worse in the Northwest than in the Southeast.
8. Various alternative and complementary medicine treatments were discussed. Margaret S said that herbal remedies had helped a lot with her pain, and her UTI’s had decreased from monthly to only one in the past 7 months. Eileen A said she had tried lots of acupuncture, reflexology, laser puncture, Thai massage, pilates and homeopathy for 2 years, all with no effect.
9. Someone asked if there were any really long-term effects from TM, like post-polio syndrome. No one knew of any – any suggestions from other members?
10. There was a discussion re Lyrica pain drug, which many pain clinics in England were recommending for TM. Margaret S said that her GP would only prescribe this drug for shingles and epilepsy pain when and if it was accepted by her local Health Board.
11. Josephine B said she had suffered at least 4 attacks over the past 5 years, with neuros still not sure whether her condition was TM or MS. Each time she was treated with steroids which caused nightmares. Originally she had had physio weekly but this was now given up.
12. Tony commented that all neuro conditions were subject to frequent errors and revisions of diagnosis, and mentioned an amazingly high error percentage for Parkinson's Disease and migraine, which he asked us not to minute.
Disclaimer: The Transverse Myelitis Association and TM Society do not endorse any of the medications, treatments or products reported. This information is intended only to keep you informed. We strongly advise that you check any drugs or treatments mentioned with your physician.
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