Beccles & District ME/CFS Support Group

Annual General Meeting

2011-11-21T12:09:00.003Z

A provisional date for the AGM has been suggested as 21st May 2012, at the Quaker Rooms, Beccles at 1.15pm.
This will be confirmed nearer the time.

General Meeting

2011-11-21T12:03:00.002Z

A General Meeting will be held at the Quaker Rooms, Beccles at 1.45pm on March 5th 2012.
This has been suggested as a provisional date and is subject to confirmation nearer the time.

2011-09-06T15:10:00.003Z

Christmas Meal - Update.

The Christmas Meal will take place on Monday 5th December. 12.30 for 12.45pm, in the Quaker Hall, Beccles.

Costs; Members £5. Guests £10.

There will be a raffle, donated prizes will be much appreciated.

Bookings and fees by 25th November to Brian Hindle, 21 Annis Hill Road, Bungay, NR35 1JJ. Tel: 01986 893676

Any meal queries also to Brian.

Home Baked Ham gf df

Tandoori Chicken gf df

Vegetarian Tarts v

Herbed Potatoes with Balsamic Vinegar gf df v

Beetroot & Apple Salad gf v

Roasted Pepper Salad with Basil gf df v

Houmous gf df v

Selection of Hand Baked Bread df v

Orange & Almond Cake gf df v

Rich Chocolate Tart v

Fruit Salad gf df v and Cream gf v

gf = Gluten Free

df = Dairy Free

v = Suitable for Vegetarian

Informal Get Together

2011-09-06T15:05:00.003Z

There will be an informal get together at the Waveney House Hotel, Beccles on Wednesday 12th October between 1.30pm and 3.30pm. There is a reserved table in the quiet area of the bar, food and drink available.

The hotel would like an idea of numbers, so if you are coming please advise Alan Hoggett, by 1st October, on 01502 519609.

Liz Cole

2011-08-12T16:44:00.000Z

Liz Cole Memorial Service

There will be a service to celebrate the life of Liz Cole on Saturday September 3^rd at 12.00 in Westleton Church, all are welcome.

Liz is a past Secretary of the group, she lost her battle with cancer on July 26^th, she will be greatly missed by all who knew her.

Christmas Meal

2011-07-25T13:17:00.002Z

The Christmas Meal will take place on Monday 5th December @ 12.15pm in the Quaker Hall, Beccles.
Further information will be posted here as and when arrangements are finalised.

Garden Party

2011-07-25T13:04:00.002Z

There will be a Garden Party at Mallards, Low Road, Thurlton, NR14 6QD on Wednesday August 3rd commencing 12noon until 2pm. This is the home of the Groups new chair Jess Mace. Members are invited to bring along their own picnic, along with seating. Tea and Coffee will be available. Jess invites you to come along and sit under her Walnut Tree! You are welcome to wander in her wilderness garden, please bring suitable footwear, you attend at your own risk.

Please see latest Newsletter for further contact details and directions.

E.G.M.

2011-06-27T10:24:00.002Z

The EGM of the group will take place on Monday July 18th at 1.30pm in the Quaker Rooms, Beccles.
It is to elect the new committee.
We will talk about the way forward for the group.

Advice & Information Surgery

2010-09-21T07:36:00.001Z

Beccles & District ME/CFS Support Group are hosting an Advice & Information Surgery
Tuesday 5th October 12.30-3.30
Beccles Quaker Hall

Open to all affected by M.E./C.F.S and people with other health problems and disabilities. This is a chance for sufferers to come and see what services, support and therapies are available to them.

AGM

2010-04-21T10:44:00.002Z

The 2010 AGM will be on Tuesday May 11th at 1.45pm in the Quaker Rooms, Beccles. We look forward to seeing as many members as possible.

April Meeting

2010-03-16T09:15:00.001Z

The next group meeting is on Tuesday April 6th at 1.45pm in the Quaker Rooms Beccles.
It will be a social gathering.

MSc Study into ME/CFS

2010-03-16T09:13:00.001Z

I am just writing to enquire if it would be at all possible for me to
advertise my current research study on your "Beccles and District ME Support Group" website or through
your mailing list if you have one? As an MSc student at the University
of St Andrews, I am currently researching the experiences of those with
ME/CFS, with particular emphasis on the role of patient-provider
communication. I have an online questionnaire which aims to look at
whether there is any direct impact from the experiences ME/CFS
sufferers may receive from their primary health care contact. The
questionnaire should take approximately 20 minutes and contains four
different sections and all responses are kept completely confidential.
There has been a substantial amount of work conducted within the area
of patient-provider communication and its’ impact on those with ME/CFS.
However, this study aims to provide a clear and concise analysis
linking two factors together and hopefully providing adequate feedback
to health practitioners that might ultimately be useful in highlighting
the needs of ME/CFS sufferers.

The website for my questionnaire is:

www.surveymonkey.com/s/CFSonlinesurvey

I really feel that this is an area that, given enough responses,
could provide substantial results to better the treatment patients
receive by their doctors and therefore, feel the study is valid and of
benefit to your readers.

February Meeting

2010-01-15T09:20:00.002Z

On Tuesday February 2nd at 1.45pm in the Quaker rooms Beccles, we will be having a talk by POhWER ICAS (Independent Complaints Advocacy Service), they help people who make complaints against the NHS.

December Meeting

2009-11-11T09:22:00.002Z

The next meeting is on Tuesday December 1st in the Quaker Rooms Beccles, when we will be having a Christmas Meal and our annual photo competition. The meal is 12.45 for 1.00pm start with the photo competition at approx 2.00pm

October Meeting

2009-09-17T07:59:00.002Z

The next meeting is on Tuesday October 6th at 1.45pm in the Quaker Rooms, Beccles. We will be having a talk by two O/Ts from the ME Service.

August Meeting

2009-07-22T07:58:00.001Z

The august meeting will take place in the Quaker Rooms, Beccles on Tuesday August 4th at 1.45pm. This will be a social gathering.

'Just Four Quid'

2009-05-04T08:44:00.000Z

'Save a lot, give a little' – as charities launch £1m appeal for ME research.

Two charities are launching a recession-busting campaign to raise £1,000,000 for biomedical research into the much-misunderstood illness ME/ Chronic Fatigue Syndrome.

ME Research UK and the ME Association have joined forces in the `Just Four Quid' campaign which will use the internet to encourage donors to take advantage of weekly money-saving tips, and then give some of the money they save to the appeal.

The campaign will begin on 12 May 2009 – International ME Awareness Day – and last for a full year. It will be run through a credit-crunching daily blog atwww.justfourquid.com

"If all 250,000 people in the UK with ME/CFS gave just £4 to the appeal we'd reach the £1,000,000 target in next to no time. But nothing is ever that simple", said Tony Britton, publicity manager at the ME Association.

"So we've designed this blog to help people save money on everything from their utility bills to their haircuts in the hope that, once they've saved a little, they'll give some of it back."

"Of course, we'll always welcome straightforward donations. People visiting the blog can choose to support either charity, or both".

Inspired partly by the journalism of personal finance guru Martin Lewis, the "save a lot, give a bit back" approach could well become a model for charity appeals in these troubled times.

The Charity Commission has reported a fall in many charities' donations as the recession bites. But the `Just Four Quid' Appeal aims to buck the trend by leaving participants better off by the end of the year – even though they've given little and often to the campaign.

www.justfourquid. com will be a source of new money-saving ideas, and keep people up to date with progress.

"It's always been a bone of contention among people with the illness that the big medical research bodies have put far too much money into studying psychological interventions for ME/CFS", added Dr Neil Abbot, operations director at ME Research UK.

" 'Just Four Quid' aims to give ordinary people the chance to swing the pendulum back to much-needed physical research into the nature and causes of ME – and help bring forward the day when there are reliable diagnostic tests and even a cure for this illness".

AGM May12th

2009-04-15T18:50:00.002Z

The AGM of the Beccles & District ME/CFS Support Group will take place on Tuesday May 12th at 1.45pm, in the Quaker Rooms Beccles.

April Meeting

2009-03-08T09:23:00.001Z

The next meeting is on Tuesday April 7th at 1.45pm in the Quaker Rooms, Beccles, when we will be having a talk on Crystal Healing.

TYMES Trust Support Judical Review of NICE Guideline

2009-02-10T09:14:00.002Z

The Trust is actively supporting this week's Judicial Review of the NICE GUideline on CFS/ME (CG53) which was published in 2007.

The case against NICE has been brought by Kevin Short and Douglas Fraser, two patients who have had Myalgic Encephalomyelitis (ME) for many years.

The hearing is in the Royal Courts of Justice, The Strand, London. Dates: Wednesday 11th and Thursday 12th February 2009.

The Trust published a two-page article on the NICE Guideline in Vision 2007-2 entitled 'The Good The Bad and The Ugly'. You can read it on our magazine page here www.tymestrust.org/tymesmagazine.htm

This is a balanced article, quoting some statements by NICE that might help families but also detailing some of the very serious problems with the Guideline.

Overall, the Trust takes the robust view that this Guideline is 'not fit for purpose'. It was our fear when the Guideline was published that the bad would drastically outweigh any good that was in it, and in our experience, this is precisely what has happened.

As we feared, the impression given by NICE of the success of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) for ME, coupled with their recommendation that they be offered to all, has already led to a blanket application of the graded activity approach by ME clinics in the UK and abroad. It is routinely applied to children.

Doctors and teachers suspect that when a child does not respond positively to this type of management, there may be sinister reasons, such as child abuse, neglect, or Munchausen's Syndrome by Proxy (now referred to as FII).

Thus Child Protection investigations appear to have increased and families are under even more pressure than before via graded activity programmes to get their children back into school, no matter what this does to their educational results, or whether it is 'suitable' education under the law for that particular child.

The Trust's presentation to the All Party Parliamentary Group on ME concerning Child Protection Issues is here: www.tymestrust.org/pdfs/childprotectionissues.pdf

We have provided Witness Statements to support this Judicial Review. The vast majority of ME organisations are also in support of the Claimants.

Norfolk & Suffolk M.E./CFS Survey 2009

2009-01-29T09:26:00.005Z

NHS service in Norfolk and Suffolk – patients launch new website.

Patient representatives campaigning for improvements to the NHS service for people with ME/CFS in Norfolk and Suffolk – which has been without a lead consultant since the retirement of Dr Terry Mitchell – launched a website to enlist the support of ME/CFS sufferers, their families and carers.

And there's a prize draw to encourage patients with ME/CFS to take part in a confidential online patient survey.

People are being asked to say what they want for an ME/CFS service in the two counties. The results will be passed on to NHS service commissioners.
Dawn Whittaker, one of the people behind the website, said: "The website has two functions – to publicise the patient survey and to keep people in Norfolk and Suffolk up to date with the development of ME/CFS services in the region."

When the NHS has written its Draft Service Model, this will be put up on the website and patients encouraged to send in their own comments.

The Norfolk and Suffolk ME/CFS Service Development Group was set up at a meeting chaired by the Great Yarmouth and Waveney Primary Care Trust in August 2007. There are patient representatives on it for each of the following:
Norfolk, Suffolk, Great Yarmouth and Waveney, the severely affected, and children and young people.

The patient survey is supported by Beccles and District ME/CFS Support Group, Suffolk Youth and Parent Support
Group, local members of the 25% ME Group, ME Drop In Support Group Great Yarmouth, and West Norfolk ME Support Group. Their members will be helping to get paper versions of the survey to sufferers who don't have access to the internet.

www.norfolkandsuffolk.me.uk/surveylink.html

And there's a prize draw to encourage patients with ME/CFS to take part in a confidential online patient survey.

M.E./CFS MITOCHONDRIA PAPER

2009-01-20T09:51:00.002Z

GROUND BREAKING ME/CFS MITOCHONDRIA PAPER:

Drs Sarah Myhill, Norman Booth and John McLaren-Howard have just
published a ground breaking peer-reviewed research paper in the
International Journal of Clinical and Experimental Medicine entitled
CHRONIC FATIGUE SYNDROME AND MITOCHONDRIAL DYSFUNCTION (see abstract
below and attached full version). This paper is very significant indeed
for the ME/CFS Community worldwide and is presently available for free
download as a pdf at:
http://www.ijcem.com/812001A.html
http://www.ijcem.com/V2_No1.html

February Meeting

2009-01-08T09:22:00.003Z

The next meeting will be on Tuesday 3rd February at 1.45pm in the Quaker Rooms, Beccles, when we will be having a social gathering.

December Meeting

2008-11-05T09:39:00.003Z

At the December 2nd meeting we will be have our Xmas Buffet, 1.00 for 1.15pm, for those just coming to the meeting after it will be approx. 2.15pm when we will be holding our annual photo competition.

October Meeting

2008-09-08T08:50:00.003Z

At the October meeting we will be having a talk about the Lightning Process by Steve Fawdry and Kath Simpson who run a practice at Wrentham, it will be on Tuesday 7th October in the Quaker Rooms, Beccles at 1.45pm.

December Meeting

2007-11-14T08:47:00.000Z

On Tuesday 4th December members will be having a Xmas Buffet, 12.30pm for 12.45pm followed by our usual meeting, when we will be having our annual photo competition, for those just coming to the meeting it will start at about 2.00pm.

Charity Christmas Gift Fair

2007-10-12T07:48:00.000Z

Christmas Gift Fair

Come to a Christmas Gift Fair in Aid of Charity.

On sale will be a range of beautiful handmade cards and crafts, perfect for Christmas presents.

There will also be a tombola, raffle, games, cake stall and teas and coffees.

Saturday 10th November 2-4 pm.
At the Dussindale Centre, Thorpe St Andrew near Sainsbury's.

The event will be supporting a range of charities including Holidays From Home, CFS Research, AYME and Cancer Research.

http://www.holidaysfromhome.co.uk/Holidays From Home sending free virtual holidays to people who are bed or house bound or suffering from a long term illness.

http://www.bedboundandbored.com/Bedbound and Bored, a website for people who are bed or house bound, helpingthem to break the monotony of daily life.

http://www.meandmylife.me.uk/ME and My Life, a web site supporting ME sufferers and their families get through each day.

http://www.easytoswallow.co.uk/A web site providing Recipes for People with Chewing and Swallowing Problems, due to ill health, dental work or advancing age.

AGM Tuesday May 8th

2007-04-24T07:37:00.000Z

The next meeting will be the AGM on Tuesday 8th May at 1.45pm in the Quaker Rooms, Beccles, we would like to see as many members there as possible.

The speaker after the AGM will be Keith Dunbar, he is a retired GP who suffered from ME/CFS for 15 years and was unable to work during that time.

He has tried many different things and recently tried a treatment called Nutri-Energetics Systems (NES), which scans the human body's energy field and corrects imbalances.

It has had a dramatic affect on his health - lifting the lethargy that had been part of his life for so long.
If you would like to find out more come along to the meeting, or contact me through the website.

Government Petition - ME is Real

2007-02-27T14:20:00.000Z

I have come across the following petition: http://petitions.pm.gov.uk/ME-is-real/
These are details from the governments website:''We the undersigned petition the Prime Minister to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome''''The latest DWP Guidelines and PACE are still directing the Health Service to treat ME suferrers with GET and CBT (a tool used for mental illnesses) despite the mounting evidence from a vast amount of research proving that ME is an organic not a psychosomatic disease and that the treatments forced onto those affected do in fact cause more harm than good and can worsen the condition of patients. Money should instead be invested in research into the physiologocal aetiology of ME/CFS and its treatment. Patients should not be forced into becoming psychiatric cases or lose their benefits.''

Another useful website: http://www.mecfsparents.org.uk/cgi-bin/Yabb2.1/YaBB.pl.
It is a great site for parents with ME/CFS which is full of advice & support on both parenting & general ME. People have to register but it's really helpful.

Activive

2007-02-26T14:33:00.000Z

Has anyone heard of Activive?

One of our members has sent me this information about it, and we'd like to know if anyone has tried it.

Activive is a proven product from MicroNutra Health™. It is specially formulated to help you gain energy and be more productive every day. Activive is not like all the other "chronic fatigue" products out there. Activive works differently in that it targets the root cause of chronic fatigue and works to safely reverse the problem.
It can be checked out on http://www.micronutra.com/activive.html

Meditation helps you to switch off your mind

2007-02-20T16:24:00.000Z

At our group meeting in February we were given a talk on Meditation & Relaxation.

We were told that Meditation helps you to switch off your mind; you must be able to switch off to take full advantage of it. It takes a long time to learn the discipline, you need to stick at it.

You cannot rest by watching TV or reading, you need to be able to take your mind to a different place. If things are getting on top of you try to switch off for a while.

We were taken through 30 minutes of their programme talking us through it, it was the quietest and most relaxing meeting we've ever had.

The next meeting is on Tuesday April 3rd at 1.45pm in the Quaker Rooms, Smallgate, Beccles, when we will be sharing our interests in hobbies, and hopefully encouraging members to try something different.

New Blog for ME/CFS support Group

2007-02-05T17:13:00.000Z

Welcome to this new blog, which has been set up by www.imajaz.com for the Beccles and District ME/CFS Support Group.