Telephone: 07974606280 E-mail:
Website: www.fibrosupportmedway.btck.co.uk
October 2012 ISSUE 61
Next Meeting: Thursday 22nd May, at St Stephen’s Church Hall, Maidstone Road, Chatham, ME4 6JE. 1.00pm to 3.00pm
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MEETING DATES FOR 2012
Thursday 22nd November – Colin Waldock, Acupuncturist & Physiotherapist
Thursday 24th January
All at the above address and time.
SEPTEMBER MEETING
As those of you who attended will know, the September meeting was a celebration and farewell party, dedicated to Margaret and Ron. It was a wonderful meeting and there was a very good turnout, which included the Deputy Mayor of Medway – more about that later…
COMMITTEE MEMBERS
As you know, Ron and Margaret have now retired from running the Group and, as from now, the new committee will take shared responsibility for it.
The committee members are as follows:
· Sarah Russell – Group Co-ordinator
· Peter Carmichael – Chair
· Alison Thompsett – Treasurer
· Margaret Randerson - Librarian
· Pat Wickham – Leaflet Distribution Co-ordinator
· Jean Spain – Lleader of Sittingbourne & Sheppey Group.
CONTACT DETAILS CHANGE
The new contact number for the group is 07974606280 which operated by Margaret Randerson. If you leave a message, she will ring you back on a landline at a convenient time.
This number is available for anyone who has or cares for those with Fibro and who need to talk about their concerns or get advice on accessing information.
LIBRARY BOOKS & DVDs
Books & DVDs about Fibromyalgia are available for loan at each meeting. Margaret Randerson is happy to deliver and collect within a reasonable distance in Medway. Margaret can be contacted on the Group’s mobile number as above.
Please ensure that you return all Library items at the next meeting after they have been borrowed as others may be waiting for them. If you are unable to do this please contact the Librarian.
WHEELCHAIR LOAN
We have 2 wheelchairs to loan out to members. Please call the group phone number 07974606280 to book.
FUNDING UPDATE
The balance in our Bank Account at the end of July 2012, was £3253.03.
There has been no expenditure since the July meeting.
At the September meeting and during the past two months, we raised, 50p from Plugmates, £54 on the raffle, £10 for Pens, £8.60 for Refreshments, £20.80 in Donations, £50 for sale of 024 Fibromyalgia, £1 for Car Stickers, £2 for Notepads, and £750 Donation from the Fundraising Event.
This gives a total of £896.90 to be deposited in our bank account.
This gives us total of funds of £4149.93. .
DONATIONS
I would like to acknowledge all donations sent in during the last two months. All donations help ensure the service remains at the present level. I am not able to respond to each one personally but please accept our thanks to you all. They are much appreciated.
YOUR TIPS…
Our May meeting took a different format to usual, in the form of a question and answer session. Following on from the wide range of treatments, supplements and medications that were commented on, we will be running an A-Z of articles on each of them. The list was very long so they will be spread over the next few newsletters.
If you have a tip for relieving the symptoms of Fibro or have come across something that makes life that little bit easier, let us know and we will research and print some information on it.
THANK YOU SO MUCH!
Wow!! What a send off!
Ron and I came up from Eastbourne for the September meeting, our only expectation that there may be cake (well, that was Ron, of course!). We were looking forward to our last meeting and having time to say a proper goodbye to the many members we have had the privilege to help over the last ten years and to being just guests rather than running the meeting.
We had an inkling that a little more was afoot when Sarah emailed to ask us to arrive fifteen minutes late. I have to say that she nearly came unstuck with that when my brain (which seems to have gone into meltdown with living on the Sunshine Coast, as Eastbourne is known) attached that message to another meeting we were to have with Sarah on the Friday. However, fortunately I read the email out to Ron and he indicated my mistake, so we did manage to follow instructions.
We walked in to applause and were duly asked to sit on the front allocated seats facing the Group members. Now I’ve run meetings for ten years (albeit, in the beginning I was very nervous, never having been an ‘out the front’ person), and was quite happy doing this, but sitting out the front not knowing what was going to happen, with all eyes on us, wasn’t quite the same. Ron would say that I like to be in control, and I guess he’s right.
There is no way in the world we would have expected such a wonderful send-off as we had. Each of the Committee members stood up and said some lovely things about us and all that we had done for the Group, and each time we were presented with gifts. We were overwhelmed. We will treasure each and every one of the gifts and they will be the means of remembering all the really great times we have had over the last ten years running the Group and getting to know so many lovely people. Thank you also to Julie, who now runs the Maidstone Group, and who thanked us for starting up that Group.
Much to our surprise and delight, Sarah had invited the Deputy Mayor of Medway, and she gave such a lovely speech that even she admitted that she felt quite emotional, so you can imagine what this did for us.
To Ron’s further delight there was cake! Well, there were two – one for the ten years of the Group and one for our leaving. We were honoured to be asked to cut both cakes.
The meeting ended with a very special raffle, and then we were able to say our individual goodbyes to all who have enriched our lives over the last ten years. Thank you all so much. We will remember you all with great affection.
Our thanks especially go to Sarah for organising the meeting, and also the Committee Members who assisted her. We wish you all the very best for the future.
Margaret & Ron
THANKS….
Following on from Margaret’s letter, I personally would like to thank all of those who attended the September meeting, it was a particularly good turnout and I am sure Margaret and Ron appreciated it. We wish them a very happy, healthy and long retirement.
We were exceptionally lucky to be able to welcome the Deputy Mayor of Medway, Councillor Josie Illes to our meeting. She made a wonderful speech which brought many of us to the verge of tears. Suffering from a long-term condition herself, she empathised with us and this showed in her use of words. She stayed for the whole two hours and may of us got to chat to her. Our thanks go out to the Deputy Mayor for taking time out to join us.
Thanks also to the other committee members who helped set up the hall, ready for the celebrations. We are always in need of assistance in setting up for the meetings, running the refreshment counter and selling raffle tickets. If you are able to help, please let us know.
As Alison Thompsett takes over the role of Treasurer from November, we say goodbye to Hazel Rawlings who has been our Treasurer since the Group began. Margaret and Ron presented her with a paperweight to mark her retirement. Thank-you Hazel!
FROM HAZEL RAWLINGS
I would like to say thank-you very much to the Fibromyalgia (Medway) group members for my lovely gift for being Treasurer for the past 10 years. It was very much appreciated. Good luck to Alison, who will be taking my place and also to Sarah as Co-ordinator. I am sure they and the other committee members will keep the group running smoothly.
Kind regards
Hazel Rawlings
OXALATES
Following my report in the last newsletter about an article in the Daily Mail, I found the following, which was posted online by Doylene Brents.
Oxalates are organic compounds naturally occurring in certain foods, mainly vegetables and fruits. An accumulation of oxalic acid crystals in the muscle and connective tissue cells may be the cause of muscle aches and pains associated with FMS.
FMS can be a debilitating condition, involving many systems within the body. It stands apart from arthritis and autoimmune reactivity in that the muscles are not inflamed on biopsy. However the pain can be every bit as bad and it is often resistant to treatment. Associated symptoms of FMS include chronic fatigue, headaches/migraines, brain fog, yeast overgrowth, insomnia and hormone imbalance.
For many years, people with a condition called congenital hyperoxalosis have been prescribed low oxalate diets. These people have an accumulation of oxalates that may result in kidney stones and crystalline arthritis. It is also recognised that vulvodynia and vestibulitis (pain and inflammation in the vulval area) may be associated with oxalate deposition in the tissues.
So the idea of low oxalate diets is not new – it is the association with Fibromyalgia that is under more recent investigation. Dr St.Amand, author of “What Your Doctor May Not Tell You About Fibromyalgia”, promotes the use of a medication call guaifenesin, to treat FMS. Guaifenesin was found to increase excretion of 60%phosphates, 30% oxalates and 30% calcium. The medication guaifenesin is fairly benign. The challenge with this protocol is strictly avoiding all salicylates (another organic compound found in certain foods, personal care products etc.). Also guaifenesin is not a quick fix product and may take months to show real benefits, and can cause a worsening of symptoms initially as the body dumps phosphates and oxalates. That said, a number of FMS sufferers have found relief with guaifenesin. For those interested in this protocol, the book by Dr St.Aumand is recommended reading.
There may be an interaction between calcium, magnesium and oxalate. People with high oxalate levels sometimes do not tolerate magnesium well, leading to irregular heartbeat, nausea, stabbing pains and increased muscular aches (this may also occur with Epsom Salt baths which are magnesium sulphate). Certainly FMS sufferers should make sure to take calcium and magnesium in the citrate forms, which are best suited to block the absorption of oxalates and helps to excrete them from the body.
Another oxalate connection relates to candida and yeast overgrowth. Good bacteria in the gut help to keep to oxalates in check by breaking them down. Bad bacteria in the gut can produce oxalates.
Oxalates are said to suppress the immune system and make one more susceptible to candida overgrowth, Therefore, along with a low oxalate diet, addressing yeast is imperative to reducing the overall oxalate overload.
There are even more implications of oxalates in the body. Oxalates deplete glutathione, one of the key antioxidants; oxalates change how zinc works within the body, which can affect immune function; and they also fuel inflammation which is a major issue in FMS.
The book “What Your Doctor May Not Tell You About Fibromyalgia” is available on loan from our library.
To help you get started on a low oxalate diet, I have put together a list of some of the foods, low in oxalates;
Drinks: Fruit juices, cola, ginger ale, cider, milk and water.
Vegetables: Butternut squash, cabbage, turnips, red peppers, cauliflower, cucumbers, iceburg lettuce and sprouts.
Fruits: Bananas, avacado, oapayas, apples, lemons, cherries, melons, grapes, lemon and lime juice, nectarines and mangoes.
Grains: Cornflakes, egg noodles, white rice, wild rice and rye bread.
Meats: Beef, lamb, pork, fish and shellfish and poultry.
Beans, nuts and seeds: These fall into the medium and high-end of oxalate-rich foods. The few types of foods that are considered low oxalate are lentils, water chestnuts and coconut.
Sauces and condiments: mustard, nutmeg, oregano, salt, vinegar, vanilla, mayonnaise, butter and vegetable oils.
Try to avoid: Beer, many types of tea, cocoa and chocolate milk, sweet potatoes, beans, celery, spinach, eggplant, beetroot, berries, plums, tangerines, wheat germ, oatmeal, whole wheat flour, meat substitutes such as beans and tofu, pepper, cinnamon, ginger and soy sauce.
Let us know how you get on!
ATOS MEDICAL ASSESSMENTS
Thanks to one of our members who provided details of this article, published in the Daily Record on September 24th.
A NURSE has revealed how her own life was ruined after under-fire benefits firm Atos forced her to “trick” disabled people out of cash.
Joyce Drummond’s medical training meant she knew claimants were unfit to work but she was told to mark people as fit if they could write or show up for an interview properly dressed. Eventually, Joyce was carpeted by bosses for being “too nice” to claimants.
After five months, she was signed off with stress caused by “having to trick sick people out of their benefit”. She quit in July 2009 and hasn’t worked since.
Joyce said candidates were marked down if they:
*looked well-presented, with neat hair and make-up.
*turned up with a toddler.
*could sign the application form.
Public fury is growing against Atos, who have assessed thousands of people with terminal illnesses as fit for work.
And thousands with genuine chronic conditions have been dragged over the coals repeatedly by their inquisitors.
Mum-of-one Joyce, from Mosspark, Glasgow, said Atos decision makers paid no attention to her professional clinical opinion and were only interested in cutting down the number of claimants.