Cathcart ME Support Group.

    

Newsletter No: 1/11                                                 Jan 2011

You can download the file here. 46KB

You can also download the Programme here. 38KB

 

Newsletter No: 4/10                                                 Nov 2010

You can download the file here. 43KB

 

Newsletter No: 3/10                                                 Sept 2010

You can download the file here. 44KB

  

 

Newsletter No. 2/10                                                 May 2010

Dear Friends

A warm Welcome to the spring edition, including in this package a programme for early summer and a letter for you to personalise in connection with the visit of  Dr Chaudhuri on Thursday 24th June and at the earlier time of 7.00pm. 

Our AGM was held on 25th March, the February meeting having been postponed due to the sudden snow storm.  Memberships were confirmed at £3.00 and the church donation at £100.00 as there were no further nominations, the committee was re-elected – Details overleaf. 

The Treasurer thanks those who have already paid their subscriptions and donations. For anyone who has overlooked payment, a further form is at the foot of the programme. 

Jean relaxed us in April with her reflexology and Head and neck massage. We also viewed the 5 min DVD entitled “What about ME” with sharp pointers from Sufferers, carers, medical and research staff, to encourage further research and health policy reforms. Well worth a visit at http://www.whataboutme.biz/ 

On Thursday 27th May 2010, we will have feedback from Peter on the Cross-Party Group Activities, including news from the ME awareness event and discussions on the Scottish Good Practice Statement. There will also be an opportunity to Chat & Care over a cuppa.  

On Thursday 24th June 2010 at 7.00pm, we are privileged to welcome Dr Abhijit Chaudhuri, Consultant Neurologist at the Essex Centre for Neurological Sciences in Romford, Essex.  

He is renowned as a caring neurologist and researcher in the ME community, and had formerly held the position of Clinical Senior lecturer and Consultant Neurologist at the University of Glasgow and the Southern General Hospital.  

He will discuss Developments and Advances in Biomedical Research & Treatments of ME/CFS. This theme will continue after the refreshment break with Question Time. 

As we have the use of the Church, there is adequate accommodation with full disabled facilities. We would ask that those with wheelchairs get in touch in order that seating can be reserved for you and your carer. 

Details of our facilities and parking etc are included on the attached programme and can also be downloaded from our website. 

A copy of a letter is enclosed and we ask that you personalise it and send it to your GP, District Nurse etc. Additional copies can be downloaded from the website or by giving us a call. Everyone’s help is required to publicise this event, both within the ME community and within the Medical and Related Professions. 

In order to further ME research, the group is covering the cost of the evening. Admission is free but a collection will be made and donated to ME Research. We look forward to your support and as ever, if you have any questions, feel free to get in touch. 

On Thursday 29th July, we have our Fair, Bring & Buy and Chat Night. Finally on Thursday 26th August we have an overdue welcome to Pamela Spence MA(Hons), BSc(Hons) MNIMH. Medical Herbalist. Pamela trained at the Glasgow School of Herbal Medicine specialising in the treatment of ME/CFS. 

Alice, a Volunteer and Connie have recently undergone surgery, we send them our best wishes. 

As some of you may have already heard, Pat Wright the advocacy worker at the 25% ME group, relocated to England and we send her our thanks and best wishes in her new venture. Unfortunately the post cannot be refilled at the moment due to financial constraints and the re-introduction of the service will depend on mainline funding being secured. In the meantime they will do their best to re-direct enquirers to alternative local/national advocacy services. The Groups other services will continue as normal. 

Following our item in the last issue about the Daisy Street Advice Centre in Govanhill, we are delighted to tell you that the centre is now under the auspices of the Glasgow Advice and Information Network which has outlets in Castlemilk, Toryglen, Gorbals and The Bridge Project in Cathcart, and these have previously been used by our members. Contact Details: Telephone No: 0141 424 4414,  Website: www.castlemilklawcentre.co.uk 

If you have difficulty in walking, please advise them when making an appointment in order that they can book a room near reception. 

We hope that as many of you as are able, will participate in our activities over the next few months and remember that you can keep up to date with what’s happening at the group and beyond by visiting our website at: http://www.cathcartmesupportgroup.org.uk/  

 rogramme for May - August 2010. 

PROGRAMME  May – August 2010

Thursday

27th May 2010

at 7.30 pm

Feedback from XPG

Chat & Care

Feedback from the

Cross-Party Group Activities

Chat & Care over a Cuppa.

Thursday

24thJune 2010

at 7.00 pm

Doors Open at 6.30pm

Guest Speaker

Dr Abhijit Chaudhuri

Developments and Advances in Biomedical Research & Treatments of ME/CFS.

Thursday

29th July 2010

at 7.30 pm

Fair, Bring & Buy

and Chat Night

A chance to Chat and Care whilst doing some fund raising

Thursday 

26thAugust 2010

at 7.30 pm

Pamela Spence

Medical Herbalist

Some advice on herbal treatments that may help ME/CFS.

 

Newsletter No. 1/10                                        January 2010

Dear Friends

A Warm Welcome to Our first newsletter of the 2010 and also enclosing the programme to April and the committee overview for 2009.

=============================================================================================January January Meeting Cancelled.

=============================================================================================Due Due to the current weather conditions we have decided on safety grounds, to CANCEL the January Meeting.  Please remember that although there will be no meeting until February, John and Tony are just a Phone Call away, if you need support or just to chat.

  

Due to a high level of illness and personal circumstances, we were unable to raise a quorum at our November meeting. The AGM will be now be held at our February meeting.

 

Notice is hereby given that our 20th Annual General Meeting will be held on Thursday 25th February 2010 in Cathcart Trinity Church, 90 Clarkston Road commencing at 7.30pm. The Finance statement will be circulated at the meeting. Should we be unable to have a quorum an attempt will be made at subsequent meetings to attend to business.

 

In spite of the low numbers at the November meeting, and as had been our practice on previous occasions, it was agreed that the membership fees would be frozen at £3.00 and the usual donation of £100.00 would be given to the church.

We were joined at the Munch and Crunch by our volunteers, Grace MacFarlane, Sheila the Church Officer, Lauren our Church Printer and David our Church Representative.

  

Due to the uncertain weather conditions we will have an in-house programme until March, but will have an enhanced programme for the rest of the year with a special speaker in June.

  

25th February,    AGM and the chance to catch up and have a Chat.  

 

25th March,         Care, Share & Feedback with updates on Local and National issues _____________including Research.  

   

29th April,         Taster Therapy with Jean, giving you the chance to experience the Benefits of _____________ Indian Head  and  Neck Massage, Reflexology and Hand Massage.

  

On Thursday 24th June, we have a special meeting when Dr Abhijit Chaudhuriwill be present.

 

Many of you will remember Dr Chaudhuri when he was Clinical Senior lecturer and Consultant Neurologist at the Southern General and University of Glasgow.  

 

For the past five years he has held the post of Consultant Neurologist at the Essex Centre for Neurological Sciences in Romford, Essex.

 

Given his interest and experience in ME and the high regard with which he is held both within Scotland and indeed throughout the Global ME Community, we were delighted when he accepted our invitation to come to our meeting.

   

The Minister of Cathcart Trinity, the Rev Ian Morrison, has kindly granted us the use of the Sanctuary for the meeting. This will enable us to extend an invitation to the wider ME Community, as well as to Health and Related Professionals.

  

Everyone can help with this, and we will send further information with the next newsletter. Details of the meeting will be discussed at the AGM, but in the meantime if you have any questions, Please get in touch.

  

Membership Subscription forms for 2010 are attached to the Programme. Fees have been frozen at £3.00, although additional donations are always welcome. It would greatly assist the treasurer, if you bring your subscription along to the February meeting, or pop a cheque in the post. 

    

You may have heard some negative reports regarding research on the XMRV retrovirus. This is to be expected, but there is still a long way to go. Indeed it is all the more reason to support thepetition asking the Prime Minister to provide funding to conduct research on ME/CFS Patients in the UK regarding this potential breakthrough.You can add your support by clicking on the link from our website or at: http://petitions.number10.gov.uk/CFSresearch/

  

Remember you can keep up to date with what’s happening at the group and beyond by visiting our website at: http://www.cathcartmesupportgroup.org.uk/

  

We hope that as many of you who are able, will take the opportunity to come along on Thursday 25th February, to complete the business and have a chat.

  

John, Peter and Committee.

     

PROGRAMME  January – April 2010

28th January 2010

at 7.30 pm

Meeting Cancelled

Due to Current Bad Weather Conditions and Concerns over Safety.

25th February 2010

at 7.30 pm

AGM

Annual Business meeting followed by Chat Time.

25th March 2010

at 7.30 pm

Care, Share & Feedback

Updates on Local and National issues including Research

29th April 2010

at 7.30 pm

Taster Therapy with Jean

Experience the Benefits of Indian Head and Neck Massage, Reflexology and Hand Massage.

Newsletter No. 4/09

Welcome… to the final edition of the year including news of a discovery of a potential retroviral link to ME/CFS, the establishment of our own website and details of our ___ A. G. M. and Munch n’ Crunch.

Notice is hereby given that our 20thAnnual General Meeting will be held on Thursday 26th November 2009 in Cathcart Trinity Church, 90 Clarkston Road commencing at 7.30pm, followed by a Munch n’ Crunch Social.

A copy of the Agenda is attached, please bring it along. A finance statement will be circulated at the meeting. Members are requested to be along by 7.15pm to ensure a prompt start and to assist in setting up the hall for the social gathering. Your donation of tasty snacks is essential to the success of the evening but please remember that Environmental Health Regulations prohibit the use of foodstuff made at home,to be used on the church premises. Similarly, all donations should be ready for serving i.e. no heating or cooking.

We welcome both New Members and also New Readers to our newsletter. As has been the case throughout the year numbers have been small but it has also enabled more one to one discussions to take place.

 

The study, published in the journal Science, shows that the virus, called murine leukaemia virus-related virus (XMRV), was found in 68 of 101 patients from around the US with chronic fatigue syndrome. This compared with just 8 of 218 healthy "controls" drawn at random from the same parts of the US, the scientists said. XMRV was originally found in men suffering from prostate cancer. The discovery of XMRV in two major diseases, prostate cancer and now chronic fatigue syndrome, is very exciting. If cause-and-effect is established, there would be a new opportunity for prevention and treatment of these diseases.

We fully understand that a great deal more research needs to be undertaken and approved by the Medical Research Council (MRC) in order to fund this work. In the past this has proved difficult, but we feel that with the results to date we have a better opportunity on this occasion.

As recent events have shown, “the court of public opinion” can be a powerful voice and this opportunity to raise awareness of our condition and needs, must be taken. To this end, we would urge you to support the following website petition which was set up a few days after the article’s publication on Number10.gov.uk, the official site of the Prime Minister’s Office.

We the undersigned petition the Prime Minister to provide funding to research further and better particulars of the breakthrough in the understanding of Chronic Fatigue Syndrom/M.E.

The petition was raised by Joe Innis, See http://petitions.number10.gov.uk/CFSresearch/.

We understand that to create an impact we need at the very minimum 20000 signatures  - a big ASK but with your help and your relatives, friends and work colleagues, we can make it!

Further information on the virus is in the attached article by Hillary Johnson, an ME sufferer, Journalist and Author of ‘Osler’s Web’

The Committee is aware that many people are not able to attend the meetings on a regular basis and we have decided to set up a website, which will allow us to keep you up to date with what’s happening at the group and beyond as well as linking to other websites and signposting to other agencies. Check it out at: http://www.cathcartmesupportgroup.org.uk/

Be Careful, we understand that when members attend medical examinations at Cadogan Street, they are sometimes asked why they do not have a letter from the ME/CFS consultant in Glasgow. As we all know, we don’t have one – they may mean Dr David Reilly and his Wellness Enhancement clinic at the Homoeopathic Hospital – a Clinic for Chronic Fatigue not Chronic Fatigue Syndrome.

Be Careful. Some of you may have occasion to visit the private Nuffield Hospital in Beaconsfield Road off Great Western Road. Since the four hour parking restriction came into place at Gartnavel General Hospital, directly opposite, there seems to be no space to park for patients to the Nuffield and only room for drop-off within the grounds of the hospital.

Govanhill Advice Centre has been used and appreciated by many ME folk over the years at its base in the former Daisy Street School.  Social work has seemingly closed this facility and re-deployed Elaine and her colleagues. The Toryglen Law Centre has plans to re-open it three days a week, manned by their own staff. The Law Centre has also gained a good reputation and in the meantime can be contacted at 18 Prospecthill Square, Tel: 0141 613 3033.  Parking is not a problem and First Bus Nos 12, 89 and 90, pass the door.

We hope that as many of you who are able, will take the opportunity to come along on Thursday 26th November, complete the business, have a chat about the retrovirus and enjoy the social highlight of the year, -  and remember those tasty bites.

John, Peter and Committee.

On 9th October 2009, The Independent newspaper lead with the story that scientists in the USA have made a dramatic breakthrough in understanding the cause of Chronic Fatique Syndrome (CFS), sometimes known as M.E., a debilitating condition affecting 250,000 people in Britain, which for decades has defied a rational medical explanation.