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Hi Everyone,
These newsletters are a bit like buses. After a long period over the winter with no newsletters – due to Christmas, New Year and when the meetings fell – now you're getting 2 newsletters in quick succession! This is because our May meeting is on the 5th, rather than in the 3rd week of the month, as we are lucky enough to have Sue Waddle from MERUK coming down from Scotland to talk to us about their research projects.
By the way – did you realise that we always try to hold meetings in the 3rd week of the month? So then members have a rough idea of when they are!
Next meeting
Monday 5th May 6pm - 9pm
(note different day/time!)
Talk by Sue Waddle from MERUK on their current biomedical research and the conference on May 6th at the Wellcome Trust in Cambridge.
(Hilltop Carers' Centre, Primrose St, Cambridge)
Everyone welcome - families, children, carers and friends.
Usual parking in Green's Road & Primrose Croft.
A lot of our members have Multiple Chemical Sensitivities so please can members who attend meetings try to avoid wearing hair spray, body spray, perfume or any strong smelling scents.
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ME Research UK is a national UK charity, based in Scotland, funding biomedical research into ME/CFS. Their principal aim is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of ME, but they also have a mission to 'Energise ME Research'.
We hope Sue will tell us about their current research ventures and also about the various speakers presenting talks at the conference at the Wellcome Trust the next day. We are very lucky to be able to welcome Sue, as they are predominately based in Scotland, so please show your appreciation and interest by coming along to hear about one of the most important charities researching into ME/CFS.
For more information about MERUK and their involvements, please visit www.meresearch.org.uk
Or call 01738 451234.
Recent Meetings
At our last meeting we welcomed John Digby to talk about EFT. Unfortunately I was unable to attend this meeting, but my parents gave me this report: "In March the EFT talk by John Digby was well attended. John gave a demonstration of simple tapping on specific meridian points, and then a spirited discussion took place. Everyone was given a do-it-yourself instruction leaflet so they could try the basic EFT technique. This can also be downloaded at www.emofree.com and also includes the more in depth treatment. Some members seemed interested in visiting an EFT practitioner for themselves. It was a good evening."
We also welcomed Imogen, who told us about how she was working with David Howarth – a local MP – to try and help improve the situation regarding claiming benefits. As I mentioned in the last newsletter, if you have had bad experiences in this area then please contact Imogen on benefitsdiscussion1@fsmail.net or call on 07947 903357 between 6.30-9pm on weekdays and 10am-5pm on Saturdays. She'd really welcome your contribution.
I've had a few comments regarding the EFT meeting and the article about it in the last newsletter. It was felt that perhaps it was being portrayed as a cure-all and that this would be misleading for members, so my apologies for any misunderstanding.
As a rule the Cambridge ME Support Group, in providing speakers at meetings and producing newsletters, aims to provide, wherever possible, unbiased information for members to read/hear with the hope that they can follow anything up that takes their interest.
We neither Condemn nor Promote ANY treatment.
If you have ideas for meetings and newsletter articles from things you've experienced please contact any of the committee or approach us at the meetings – it's YOUR group and we want to give you things you are interested in.
A lot of our members have Multiple Chemical Sensitivities so please can members who attend meetings try to avoid wearing hair spray, body spray, perfume, or any strong smelling scents.
For more information about MCS visit www.chemicalfree.co.uk
Remember to make a note in your diary or on your calendar of the following meetings
Future Meetings Dates 2008
Wednesday 18th June 7 - 9.30pm
Pub meeting at The Green Man – Grantchester.
Friday 25th July – afternoon – to be confirmed.
Meeting at The New Cancer Centre at Scotsdales – possible talk on gardening.
Wednesday 17th September 7 - 9.30pm
AGM & Laughter Therapy Talk.
For information on Laughter Therapy, see
www.nottinghamlaughter.org.uk
November - tba
Kinesiology talk.
The Library, including Group & Clinic Information Leaflets, will be at meetings.
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ME Awareness Week
This year ME Awareness week is May 11th-17th. As usual there are lots of exciting national events taking place.
As you've already read, MERUK are holding a conference in Cambridge on May 6th. Two committee members are hoping to attend, as well as 6 group members. The group are also having a display board at the conference to raise awareness of our local group. We will have a report in the newsletter about this conference later in the year.
Here's what MERUK say about the conference: "Building on the success of last year's New Horizons conference held in Edinburgh, we hope that the day will be of interest to a wide range of professionals, patients and observers. As ME/CFS biomedical research is very varied, spanning many scientific disciplines and involving a wide range of healthcare professionals, this research conference will provide the opportunity for researchers and healthcare professionals within ME/CFS to present their latest work, share ideas and identify key challenges for the future. The full day's programme will consist mainly of invited keynote lecturers, with poster presentions describing specific studies. At present, the outline for the day includes presentations by: Dr Vance Spence (Chairman, ME Research UK), Prof. Nancy Klimas (University of Miami School of Medicine, Florida, USA), Prof. Birgitta Evengard (Department of Infectious Diseases, Umeå University, Sweden), Dr Jonathan Kerr (Department of Cellular and Molecular Medicine, St George's University of London), Dr Byron Hyde (Nightingale Research Foundation, Ottawa, Canada), Dr Dan Peterson (Whittemore Peterson Institute for Neuro-Immune Disease, University of Nevada School of Medicine, USA)." For the full list of speakers, visit: www.meresearch.org.uk/newhorizons2008.html
Action For ME's campaign this year for Awareness Week is Inequalities: looking at the gaps and differences in services (especially health services) for people with ME across the UK. They provided a questionnaire with the Spring copy of Interaction and they hope to publish the results in a report during Awareness Week.
Action For ME have been chosen by a fundraising company – The Ultimate Pillow Fight League™– to be their charity of choice this year. Action for ME are running a basic public awareness campaign – Wake Up To ME – alongside the fundraising initiative launched by The Ultimate Pillow Fight League™. The Ultimate Pillow Fight League™ is a fun, fast team competition aimed at 18-35 year-olds of the internet generation. Matches are already on www.youtube.com. The 'League' are looking for teams of "five feisty people, game to raise £275 to participate". The organisers provide "pillows, a balance beam, easy rules, music, lights and a fantastic party atmosphere!" These 'pillow fights' are happening across the country – with the Grand Final happening in London on 21/22nd May.
The M.E. People's Day Events, organised by The Peterborough ME & CFS Help Group are as follows:
"The ME People's Day Events are national M.E. events, therefore anyone affected by M.E. including carers, friends and families or anyone with an interest and/or concern with M.E. can attend.
On Monday 12th May:
11:00am-11:30am: Informal Gathering opposite Downing Street, Whitehall, London.
12:00 noon: Presentations to 10 Downing Street by a small presentations group and photo-call.
12:30pm: Presentations to Department of Health,
Richmond House, Whitehall, London.
1:00pm-2:30pm: M.E. Picnic & Poetry, St James Park, London. (10 minutes walk from Whitehall)
On Thursday 15th May:
11:30am-1:15pm: M.E. Picnic & Poetry, the Victoria Tower Gardens (just further along from Houses of Parliament Black Rod Entrance), overlooking the Thames.
1:15pm-1:30pm: Join Lobby Queue at St. Stephen's Gate, outside Houses of Parliament.
1:45pm: Prepare to enter Committee Room 6.
2:00pm-4:00pm: Open Forum Meeting to discuss the current affairs in the M.E. World.
The Open Forum is an opportunity for members of the M.E. Community, its charities, groups and organisations to discuss the current state of affairs in the M.E. World and where we are in relation to: NICE, Occupational Health Guidelines, DWP, the Mental Health Act and Mental Capacity Bill and its implications with M.E., APPG On M.E., the M.E. Observatory, recent government initiatives, representation of national M.E. Charities, NHS-Plus, Charity Commission, Carer Issues, research and a number of other related M.E. topics.
There will be an agenda for the day and it is envisaged that people who have a specialist interest on a given topic will come forward with a presentation of documented references to naturally state their case. If you would like to present a case on one of the above topics please make contact in the first instance to
12MayM.E.PeoplesDay_Events@live.co.uk
The usual "creature-comforts" are highly recommended for both days e.g. extra clothing and waterproofs, fruit, snacks, etc. Plenty of refreshments for the duration of the day/s and packed lunches for the picnic/s are a must. Mobility scooter and wheelchair users are most welcome to both Events. Those assisting are most welcome as well. A separate entrance to the House of Commons applies so please make yourself known on arrival, to the police officers outside Parliament, who will arrange a guide to escort you through Security and to the Committee Room.
Placards of a serious or humorous nature are welcome to display at the 12th May Gathering, opposite Downing Street. However, please note: NO placards will be allowed at the 15th May House of Commons Event. Thank you."
(thanks to Di Newman for organising this and providing the above information).
For more information contact
* Emall address: 12MayM.E.PeoplesDay_Events@live.co.uk
* Alternative email address: dinewman1991@hotmail.co.uk
* Postal address: PO Box 775, Peterborough, Cambridgeshire PE1 4WZ
* Landline: 01733 552872 & Mobile: 07742 615 952
Just after Awareness Week, Invest In ME are holding their 3rd International Conference – again, we have a committee member in attendance – and will hopefully report back in the newsletter later in the year. Here's what IiME say about the conference: "This will be the third annual biomedical conference on ME/CFS which has been organised and hosted by UK Charity Invest in ME.The conference will be held on 23rd May 2008 in London and builds on the successful biomedical research conferences organised by Invest in ME in previous years. It will be the culmination of ME Awareness Month 2008. As in previous years Invest in ME aim to raise awareness of the neurological illness myalgic encephalomyelitis (ME/CFS). We hope this conference will highlight the need for a national strategy for biomedical research which will lead to treatment and a cure for this devastating illness - an illness which is about 5 times more common in the UK than HIV/AIDS - yet which has had little funding spent on biomedical research." The topic this year is 'Sub-Grouping And Treatments for CFS/ME', and speakers include Dr Leonard Jason, Dr John Chia, Dr Marti Lerner, Prof Malcolm Hooper, Dr Julia Newton, Dr Irving Spurr, Dr Jonathan Kerr, Dr Judy Mikovits & Dr Jean Munro.
For further information visit www.investinme.org/index.htm
I've recently received this email from a Vanessa Mitchell, apparently a mother and son who have both had ME for over 20 years and have set up this idea. Here's what she says: "A vigil is being held on 12th May, International ME awareness Day and I am writing to warmly invite you to join us on this special day by lighting a candle and spending some time in spiritual contemplation, in support of the ME community Worldwide. Details are at www.vigilformeawareness.org.uk Holding a vigil raises awareness of ME and serves as a powerful means of encouraging unity and strength of purpose, so your participation, whether as an individual, group or organization, is greatly appreciated."
Research News
Dr Jonathan Kerr, who will be speaking at both of the forthcoming conferences, is making great strides in his research projects. The recent CFS Research Foundation newsletter details the current research www.cfsrf.com
As you may remember Dr Kerr published his pilot study last year which revealed reproducible differences in gene expression in CFS patients, and produced 7 identifiable subtypes of CFS/ME. He has now expanded this pilot study, following a large grant from the CFS research foundation, and he is now aiming to gain a clear understanding of the genes associated only with CFS, and to develop a diagnostic test. He is also performing clinical trials of new and established pharmaceutical drugs in order to identify a treatment.
Committee
We are very grateful to Linda Foley for holding the role of Co-ordinator of the group since last September, and now Thora Blondal takes over for the next 6 months. Thora is fairly new to the committee and was unable to provide a biography for the last newsletter, so here's her introduction:
 Hi, my name is Thora Blondal and I was diagnosed with ME in 2003. I've been a member of the group since then but only in the last few months have I been well enough to attend meetings and now I'm keen to do my bit so the group can continue to inspire and support us on our journeys.
Library
We still desperately need someone to take over as Librarian for the group.
As there is no Librarian to oversee the Library at meetings, please can we rely on you to fill in the lending book with your full details when you borrow anything and endeavour to return that item at the next meeting 2 months later, or if this isn't possible please contact one of the committee to arrange to have it picked up, or agree on an extended loan period. Thank you.
If anyone has read any interesting books regarding ME, or related areas, and would like to write a short book review for the newsletter, please drop me a line.
Children's Group
Although Rosemary and Linda are working very hard to try and set up the Children's Group, unfortunately they are not getting much of a response from parents at present. We appreciate that it's a very difficult time when you discover your child has ME and it can place a strain on the whole family, let alone the confusion and isolation it can place on the child – but it's these issues we like to help you with. We'd like to help reduce the isolation your child maybe feeling by providing some gentle activities, or help you as a parent come to terms with the illness by providing understanding and useful information. We want to provide support and sympathy, and just a friendly ear to talk to – so please get in contact with Linda or Rosemary if you are in this situation, or if you have ideas of how we can help children/parents. The label 'child' can be extended up to mid-twenties, so don't feel left out!
Heat Project
Did you know that if you are in receipt of an income or disability related benefit, or you're over 70, you can qualify for free loft and cavity insulation throughout your house from the Heat Project (providing property is suitable.) This could save you hundreds of pounds on fuel bills and help your house to be warmer in winter and cooler in summer, plus helping the environment.
To find out more visit www.heatproject.co.uk or call 0800 0934050 free.
Bus Pass
Also, if you are in receipt of certain benefits or are over 60, you can get a bus pass which entitles holders to free off-peak travel on all local buses in England (and not just Cambridgeshire, as before). For more information visit
http://www.cambridgeshire.gov.uk/transport/bus_timetables/newconcfareschap08.htm
Or contact your local district council.
Member's Comments
Here is another member's success story:
"Congratulations to Dr Jill Weaver (nee Claydon).
Jill has just received her PhD in Electronic Engineering at York University.
Jill had recovered sufficiently from M.E. to start at university aged almost 21, having been ill for 6 years. Although she was by no means fully fit, she studied Experimental Physics to degree level. She then undertook her PhD in the Electronics Department at York. In 2006 she married Ben, a fellow graduate. They now live in the city of York, from where Jill commutes by rail to Sheffield University, where she is enjoying a research post."
Recipe Corner
Sarah's Scones
4oz Spelt flour***
2oz Potato flour
2oz Brown Rice flour
2oz Fat
2tsp Baking powder (wheat-free)
1/4 pint Milk (soya milk works just as well) - add to mixture gradually
Cook for about 10mins, 180°C/ Gas mark 4
Scones are done when they are pale gold on top and bottom
You could add
- a handful of raisins/currants
- 3oz cheese, 1/2tsp mustard powder + pepper
*** Please note that Spelt flour is closely related to wheat flour. While some people who cannot tolerate wheat flour find they can tolerate Spelt flour, many can't. Please also note that Spelt flour is NOT gluten-free.
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