Transverse Myelitis Society

Minutes of 7th Meeting of London Support Group
19th November 2005

At Old Board Room, National Hospital for Neurology and Neurosurgery (NHNN), Queen Square, London WC1

Next meeting: Saturday 18th February 1 pm same venue (earlier start)

Note: Email addresses below are for members only, to contact each other – email addresses are not included in the Minutes posted on the website. Sally R, Lew, Yvonne Kolesar and Jean Anthony phone numbers are in previous Minutes.

Attendees (23): Jean Anthony, Wilma Atherton and husband John and infant Phoebe, Sally Dray and two friends, Angela Dunbar, Gemma Exley daughter of Lorraine, Yvonne Kolesar, Lew Gray (Secr) and wife Val Southorn, Rob Reeves and partner Sylvana and mum Joyce, Sally Rodohan (Chair), Carmel Rodohan, Therese Rodohan, Annie Schofield and friend Lucy, Roy Smith, Edward Taylor and friend Joy Durban, Corrin Tulk

Apologies received: Jane Batho, Clare Blake, Theresa Bryant, Vera Butler Robbie Carter, Lorna Cherry, Mel Corley (Treas), Marion Darville, Gaynor Eyles, Abby Evershed, Lorraine Exley, Karina Garcia-Casil, Kate Hobbs, Barbara Houston, Michael Hutchinson, Ray Joy, Sharon Livett, Carol Lodge, Therese Loh, Cindy Morelli, Leigh Niland, Jack Pennington, Karen Richmond, Margaret Shearer, Dominic Simpson, Martin and Linda Stanley, Betty Storey, Jane Thurlow-Buckley, Geoff Treglown

 

1. The TM Society is a UK-registered charity. The TMSociety handles Newsletter distribution for the TMAssoc, and the Committee is trying to make sure we have accurate addresses, phone numbers and emails for all members. We have 50 members to delete, who we can’t reach by email, phone or letter.

2. Since we have no specific UK Newsletter, these Minutes (and the website www.myelitis.org.uk) are the only UK-wide communication. We will send these Minutes to any member who requests them, preferably by email but also by post if you ask. Remember you can also view Minutes of all Support Groups – London, Scotland, Telford, Manchester, Poole - on the website.

 

3. Part of the TMS mission is to encourage local Support Groups – we can provide money, mailing list and other help. Many members are keen to get to know other TM sufferers, carers and families locally. Poole Group looks like becoming regular (29 attended). Manchester ought to be more than once a year (21 attended). There are no Support Groups (yet) in Southwest and Midlands.

 
TM Society - General Charity Business

4. Mel Corley (Treasurer) sent apologies. We need a volunteer to be Treasurer for 2006 since Mel is resigning – please contact Lew or Sally ASAP if you can help. Our bank details for anyone who wants to donate by standing order are: Transverse Myelitis Society, National Westminster Bank, 10 St Peter’s Street, St Albans, sort code 60-18-11, account 17095492. Or cheques can be posted to TM Society, 35 Avenue Road Brentford TW8 9NS. Many thanks to everyone who has made donations (who have all been thanked individually). We have received almost £600 donations since August, and we should reach our goal of being able to pay for posting out the next TMA Newsletter without having to rely on subsidy from the US.
5. Our leaflet has been successful and we are getting new members referred. Lew still to send TMS leaflets to Contact A Family, BBC Helpline.

6. New members are needed for Committee, apart from Treasurer. We are still reaching only one third of TM sufferers in UK, the website needs work, our fundraising is almost non-existent etc.If anyone is interested in helping, please contact Lew Gray or Sally Rodohan (w 020 8349 6774 or h 020 8883 2721). Must be able and willing to travel, to attend occasional committee meetings in London area. Please can we have volunteers by the time of the AGM in February.

 

7. Lew and Yvonne and Sally had attended 3 meetings with Brain and Spine Foundation, Healthcare Commission and Neuro Alliance regarding the implementation of the NHS National Service Framework for Long-Term Neuro Conditions.

 

News and Feedback for All Members

8. No one present had attended the NHS Expert Patients Programme since Sally tried it out. Sally vouched for usefulness of this course and recommended members ask their GP about it initially. EPP is a 6 week FOC course (2.5 hours per week) aimed at helping long-term sufferers manage their symptoms and medications, communicate better with spouses, families and doctors, improve diet and exercise. Sally found the course and workbook very worthwhile (even after 50 years with TM!), and there was a big bonus in learning useful local contacts to get help, meeting others in the area coping with arthritis, diabetes, MS etc.
9. News from TMAssoc in US: Wristbands are welling well and raising awareness of TM. Johns Hopkins has now published their breakthrough discovery of a single immune-system protein that can cause demyelination in human nerve cells in a lab dish and in animals as well. This discovery of a chemical cause for TM opens up the possibility of a drug to interfere with the autoimmune reaction which causes TM (and maybe MS too). The full article will appear in the next TMA Newsletter (January). See website www.hopkinsneuro.org/restore  
10. News from other UK Support Groups:-

• Manchester meeting was very successful on 17th October (21 attended on a weekday). But still there are no local people coming forward to carry on the meetings, take the work off Geoff Treglown (Ambleside) and make them more frequent than once a year.
• New Poole Group first meeting on Sat 29th October was even more successful with 29 attendees and a committee being formed to carry on the good work. Congratulations Theresa Bryant and Barbara Houston.

11. Have any members ever attended the Johns Hopkins TM Center in Baltimore USA? We would very much like to hear about your experience and impressions of them – contact Lew Gray l.gray@kpos.co.uk or phone 020 8568 0350.
12. The Brain & Spine Foundation has a new website www.brainandspine.org.uk Remember the BSF Helpline 0808 808 1000 for good advice from experienced neuro nurses.
13. Lew apologised for delay in completing TM Kids List, which would be sent (by email) soon along with Contact A Family e-Newsletter.

Suggestions and Feedback from Members (Flu Jab etc)

14. TMA and TMS do not endorse any of the medications, treatments or products reported. We strongly advise that you check any drugs or treatments mentioned with your medical adviser. Members are reporting their own personal experiences with TM.
15. Martin Stanley had emailed to say that 3 plasma exchange treatments had improved his fatigue. He was still having relapses but they were fewer now. He had been found to be low in vitamin B12 and this was under review. Martin felt that one of his relapses was caused by a flu jab (see below).
16. Lorraine Exley telephoned to say that she believed her TM was caused by hepatitis B vaccination, and another member in Scotland had said the same. The TMA(USA) and TMS(UK) Message Forums were full of similar comments from other members.
17. At least two London area members (Sharon Livett and Roger Wilkinson) considered their TM was caused by flu jabs. But several others including Jean Anthony and Angela Dunbar had had flu jabs with no ill effects.
18. Val pointed out that both flu and hepatitis B vaccinations contained mercury which was traditionally harmful to the neurological system. Geoff Treglown had emailed that he had had no personal problem following flu vaccination, but he had seen article in Sunday Telegraph (30 Oct) that suggested that the government Committee on Safety in Medicines was investigating a cluster of adverse reactions reported in patients taking warfarin (blood thinner) to guard against strokes.
19. Yvonne said that she had had her hair analysed and found that her system was very high in mercury. The source for the mercury was a mystery – she ate a lot of tuna and her house was near several cellular masts and a light tower. She was taking selenium supplement and using detox patches, which worked against all heavy metals including mercury.
20. Wilma said she had learned that some very upmarket brands of lipsticks were high in mercury. Users could test them by rubbing them on a copper coin – if the coin turned black the lipstick was high in mercury.
21. Wilma also mentioned that she used magnets overnight to reduce her pain and increase joint flexibility. Val agreed that she and Lew were regular users of magnets too.
22. Corrin had practiced as a clinical kinesiologist. She got TM 7 years ago after a difficult divorce, was offered steroids but refused them. She concentrated on taking protein supplements to generate myelin and promote cell repair, and in addition had gone on a 3-month Buddhist purification retreat. The ‘buzz’ in her limbs had lasted until 15 months ago, but now she was able to play tennis and only suffered from occasional fatigue.

London Support Group - New Members’ Experiences with TM

23. Sally welcomed new members to the Group and invited them to talk about their experience with TM. As at previous meetings, most new members have never previously met anyone else with TM, and everyone was delighted to be able to discuss their experiences with fellow sufferers.
24. Sally Dray (Weybridge) got TM 3 years ago, was affected in arms only initially plus suffered from terrible pain for 6 weeks. Eventually her GP gave her steroids and she slept for 18 hours. However she still had banding pain (helped by acupuncture a bit) and even tried morphine. Gradually the pain had lessened although it could still return if aggravated by stress. Now she feared her legs were being affected and she might be relapsing. Her neuro at St Peters Chertsey was unhelpful (Edward Taylor agreed re same doctor).
25. Edward Taylor (Walton) had got TM 18 months ago, had recovered reasonably well but still suffered from oedema (fluid retention in joint) and sensitivity in trunk. Medicos and physios had been equally useless and he had been prescribed medicine for depression but he didn’t have depression!
26. Rob Reeves (Taunton) first got eye focus problem 11 months ago at Xmas. He was in hospital for 8 days, got steroids and physio. His eyes and numbness had now improved and he could walk for 1 hour but he was still not back at work.

• £71 was collected to defray the meeting room cost and refreshments and pay for wristbands. Wilma kindly donated some lovely handmade (by her!) Xmas cards to be sold on TMS behalf. Everyone was tremendously impressed by Yvonne’s splendid lunch and home-baked brownies, biscuits and flapjacks!

 

Next Meeting

28. The next meeting of the London Support Group will be on Saturday 18th February 2006 at 1pm (NB earlier start) at same venue (NHNN).