Hi Everyone,
I hope you all had a good Christmas and that you managed to keep warm through the freezing weather we had in January. It seems a bit late to say it now, but here's to a happy and healthier new year for all of us!
This newsletter is something of a special educational issue, with two articles for parents about educational support for children who are unable to get to school, and some ideas about how to tell others about ME. I hope it's helpful!
Gillian
Next meeting
March 17th 7 - 8.15pm
We are hoping to have a pharmacist come to speak about symptom relief for people with ME. This will be combined with the Bring and Buy sale which had to be postponed from our January meeting. Please bring along any unwanted Christmas presents to help raise funds for the group!
Future meetings
In May we are planning to have a talk on the biomedical basis of ME. As the person we've approached to do this is very busy, we may need to change from our usual meeting date/time. We intend to bring out a newsletter with details at the beginning of May. If you need more info before this so you can plan ahead, please contact a committee member.
All meetings at Hilltop Carers' Centre, Primrose Street, Cambridge (parking in Green Street).
Everyone welcome – families, children, friends & carers.
The library, including Group and clinic information leaflets, will be at meetings.
A lot of our members have Multiple Chemical Sensitivities so please try to avoid wearing hair spray, body spray, perfume, or any strong smelling scents at meetings. For more information about MCS visit www.chemicalfree.co.uk |
Previous Meetings
In November, Michael Parr came to speak about the Perrin Technique. Linda writes: Michael had us all engrossed with his talk. He is an Osteopath, a Naturopath and a registered Perrin practitioner. He set the scene for his talk with the quote "Science is nothing but trained and organised common sense". He explained that the body is a ‘whole’ and that it has a self-protecting and regulating mechanism which has a tendency towards ‘normal’. Disruption of this ‘normal’, for a wide variety of reasons, affects the body’s regulatory system.
Michael gave us a detailed and visual explanation of the different systems which regulate the body, and paid particular attention to the Lymphatic system, which is basically the drainage system for the body, which gets rid of toxins and waste products so as to purify the system and maintain an efficient and effective flow around and out of the body. I was fascinated to discover that the nasal and sinus area are key to the drainage into the lymphatic system!
The Perrin Technique has been developed specifically for treating people with ME. Michael explained that the problems start when there is a build up of stress, be it physical, immunological, psychological/emotional, or whatever, which changes the immune system. The hypothalamus part of the brain becomes swamped with toxins and the self-regulatory system of the body goes wrong as the hypothalamus, which is bathed in cerebrospinal fluid which contains the toxins, drains directly into the lymphatic system. The hypothalamus has a regulatory function of the sympathetic nervous system, which regulates the lymphatic system. A cycle of malfunction begins, as a reduced blood flow and inefficient lymphatic drainage develops. Toxins build up and this all spirals through the damaging cycle. The Perrin Technique aims to redress these problems.
Michael took us through the typical signs on the body which are often an indication that there is a problem with the lymphatic system. The Perrin Technique involves specialised massage. Michael also discussed other current theories in the field of treatment for ME, these included Co-enzyme Q10 for cellular repair, green tea which helps the brain function (not good if pregnant though), vitamin D treatment, and unidirectional mild stream bathing. Go to www.theperrinclinic.com for more information, or you can contact Michael (who practices in Girton) via www.physic.co.uk, tel 01223 237459.
In January, we had planned a Bring and Buy sale combined with a discussion about symptom management. Thora writes: The January meeting turned into quite a different occasion than we had planned. We were unable to enter the Hilltops centre and after much telephoning and deliberation the decision was made to relocate to the nearest pub: the Portland Arms. The pub had a roaring fire and comfortable seats, but unfortunately also a massive television broadcasting football, and a band practising next door. Despite all this we made the best of the situation and had a lively conversation. I had prepared a little exercise to help identify what was helping us manage our symptoms and help us with our recovery, and this turned out to be an absolute treasure of information. I will collate the information and over the next few newsletters we will have a section on 'what works!' The evening turned out amazingly well: for some members this was their first venture into a public house in years!
Just Four Quid
A quick reminder about Just Four Quid - http://justfourquid.com/about - where you can save money and give some of what you save to ME research. Follow the link in the text to "previous weeks' projects" for money saving tips or use the links under where it says "DONATE!" in the right-hand menu to give to MERUK or the Ramsay research fund: these take you to a secure site and you don't need to set up an account, you can just make a one-off donation. If (like me) you prefer not to give to medical charities which research using animals, neither MERUK nor RRF are supporting any projects involving animal experimentation at the moment and (while they don't altogether rule it out) neither have any plans to do so in the future.
Telling People About ME
It can be difficult to explain to friends and family members how it feels to have ME, let alone trying to tell others who have no knowledge of the illness, or whose information is based on unsympathetic and inaccurate media stories. Here are a few suggestions of leaflets, articles, and poems which might help. Please note that some of these are copyright, so always credit the author if you are printing one out to pass on to someone you know, and don't make multiple copies of anything without permission, unless it clearly states that this is acceptable. If in doubt, just send the link.
MEChat have produced a basic but very helpful ME Awareness leaflet to help tell others about ME - it's available to download from this page of their website: www.mechat.co.uk/db/tips.htm You can make multiple copies of this, and as well as passing it on to your own friends/family/carers, they suggest you ask them to put some in waiting rooms, libraries, churches - or anywhere else there's a leaflet rack!
If you know anyone who has swallowed some of the myths about ME prevalent in the media, perhaps you could send them a copy of this article: http://theclockworkdodo.blogspot.com/2009/05/separating-fact-from-fiction.html - you are welcome to make copies of this too, so long as it is credited to the author, Juliet Montague. If anyone you know is in doubt of the severity of ME, perhaps you could send them the link to this video: www.youtube.com/watch?v=AUPkja02uR4
There are a number of imaginative ways of explaining how it feels to have ME. This one, by Rachel Miles, compares living with ME with living with an abusive partner: www.meassociation.org.uk/index.php?option=com_content&view= article&id=699:meperspectives-no-1-rachel-miles&catid=30:news&Itemid=161 - while this was written by someone with Lupus, but has been used by people with a number of other illnesses to explain the necessity of conserving energy: www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
These poems, by Frieda Hughes and Stewart Henderson respectively, also express what it is like to have ME: www.afme.org.uk/res/img/resources/Freida%20Hughes%20poem.PDF and www.tymestrust.org/pdfs/imagineme.pdf
Finally, if someone is having trouble knowing how to relate to you since you became ill, it might help to send them a copy of this open letter: http://notdoneliving.net/openletter/cfsfibro As the author, Ricky Buchanan, is Australian, she refers to CFS throughout, but if you want to change this to ME, or to make any other alterations, you are welcome to do so - Ricky is happy for people to adapt it to their own circumstances.
ConnectEd Andy Hannaford (Manager, ConnectEd) & Dawn Maclure (mother of Abbey Maclure, student)
There are groups of children who do not attend school for a variety of reasons. Some may have medical conditions which make it difficult or impossible to attend school, others might be teetering on the brink of exclusion, and some students just cannot face leaving the house. It was for these 'Hard to Reach' Students that in September 2003 ConnectEd Online Learning (www.connectedonline.co.uk/) was established. The name ConnectEd was derived from what we were attempting to do - connect students to education. The plan was to harness the internet and new developing technology to provide students with an alternative to school, thus enabling them to engage or re-engage in their learning process.
Prior to the establishment of ConnectEd these students would have received home visits from teams of tutors based around Cambridgeshire. As one can appreciate, this was a costly and often a very frustrating way of delivering education. Time was limited, travelling costs rising, and teachers were repeating lessons throughout the week to individual students in various parts of the county. Often tutors would arrive at homes to find the student out or refusing to open the door. For those with medical conditions, lesson times could be at times inappropriate to their medical needs and so were cancelled. Another way had to be found to deliver a more effective learning package for those students.
The start of ConnectEd was small. Yet despite the many hurdles faced in the first year or so and a gross lack of manpower, ConnectEd grew and students' response was highly favourable. Not one dropout and a lot of very positive feedback. Many of the students were in favour of having greater control of their learning by being able to select when and where it took place.
Since its establishment ConnectEd has actively supported the learning of over 300 Cambridgeshire children from Year 7 to Year 12 (11-16 yr olds). Currently those children working on the ConnectEd GCSE courses for English, Mathematics, and Science have achieved a 100% success rate with 60% of students getting grades A-C across those subjects. We also have a 100% success rate for students gaining Adult Literacy and Numeracy Levels 1 and 2 and CLAITS Levels 1 and 2. Many of these results were achieved by pupils who have been out of the education system for several years.
ConnectEd is a truly virtual school. It has its own learning portal so students can access work as and when they are able. For those children at home suffering from conditions such as ME, this ability to work when they feel well is of vital importance, allowing them to keep up with pupils in school and giving them a great sense of achievement. The work provided is developed by the dedicated ConnectEd teaching staff and so meets the needs of its own pupils.
Dawn Maclure (mother of Abbey 12, who has suffered from ME since she was 9) tells us that ConnectEd has made an enormous difference for her daughter. She writes: 'Abbey has been unable to attend school for the past 9 months due to her illness. At first she received work from her school but we found this ineffective as most of the work was based around the lessons taught at school (as she hadn't been there it didn't make sense!). Also, this system relied on Abbey motivating herself and when you feel physically, mentally and emotionally drained that is not easy!
When we were told about the possibility of Abbey learning at home via ConnectEd we were so excited. Abbey started lessons in September 2009 and we have seen a massive change in her whole outlook. She feels so encouraged by the teachers who have really built up her self confidence and she is able to do far more work than she would if she had to face the physical effort of going out to school. The teachers understand if she is too tired to attend a lesson and she can receive a recorded version to catch up when she feels better. I can't praise this provision enough.'
ConnectEd has been able to deliver live lessons to our students via the use of Nisai Live Classroom. ConnectEd’s virtual classroom allows pupils from all over Cambridgeshire to log on and be taught lessons that cover a range of subjects in Key Stages 3 and 4. These are ‘live’ lessons! Pupils can interact with one another, take part in the lesson, and enjoy the best possible stimulus that this system can provide. Using such technology, ConnectEd has been able to double the hours provided to each student, yet still maintain face to face human contact with its pupils.
Educational SupportLinda Foley
For those of you who have children who have missed, or who are missing, a lot of school, I thought you might like to have a look at an educational support programme which I discovered through my own children’s school. It is one of the major worries for parents and children when they miss school and the despair about ever being able to catch-up with all that missed learning is very real. My son missed 18 months of school completely and then was part-time for the remaining 3½ years of Secondary school. As we know, there are many issues attached to re-integrating back into school, the ability to focus on new learning and trying to consolidate it in a noisy, bustling classroom being just one of them.
My daughter was losing confidence in maths too and I was spurred on to get an in-the-home support programme which would help both of them. I contacted The Student Support Centre (01268 535000, info@essex-student-support.co.uk) and they sent a lovely lady round who explained the programme and did a simple assessment of need, e.g. to establish where my daughter would need to start in the programme.
The programme is a set of DVDs covering the learning methods and content of the National Curriculum for maths (and they do English too), from Foundation, through Primary and right up to GCSE level, with a man or woman taking you through the process step by step. I found the beauty of the programme was in its flexibility and that you can watch a lesson when you feel well enough, or have the time, and can watch and re-do it as many times as you need to, without stress. There are workbooks for practice, progress charts, and a times tables DVD, and there is also a telephone helpline that you can subscribe to where a teacher will explain something to you with respect to maths and English (even if it’s a homework task from school!).
There are initial on-line assessments and follow-up assessments at the end of terms etc to monitor progress and inform progress through the programme. We found it very easy to use, very appealing, and very adaptable to individual needs.
It is a financial commitment, but if you are looking for such programmes to help your children and young people, I just wanted to pass on my positive experience with The Student Support Programme. I also think it would be useful for young adults and indeed any adult who wants to increase their knowledge and skills with maths and/or English.
Just to end on a very personal note, my son has just finished Secondary School this summer achieving 10 GCSEs including As. So always remember that the road to achieving success with academia may be a fraught and complicated one but that success, on many, varied levels, is always possible.
Insulation
If you have been struggling with the cold this winter, you might be interested in this tip sent by James - the energy company Eon is offering cheap loft insulation and cavity wall insulation (from £150 each). This offer is available for everyone - you don't have to be on benefits. You can find out more about it here: www.eonenergy.com/At-Home/Going-Green/Energy-Efficiency-Products/Loft-And-Cavity-Wall-Insulation/Insulation-Offers.htm - or it might be worth checking other sites to see whether other energy companies have similar offers available. If you are on benefits and you or someone in your house is a British Gas customer, you should be able to get free insulation - there is more information about this on their site here: www.britishgas.co.uk/energy-efficiency/products/home-insulation/help-on-benefits.html
Trivial Pursuit Jean Stevens
Can you guess which of the following are true and which are false?
1. Apples, not caffeine, are more efficient at waking you up in the morning.
2. Alfred Hitchcock didn't have a belly button.
3. A pack-a-day smoker will lose approximately two teeth every ten years.
4. People do not get sick from cold weather; it's from being indoors a lot more.
5. When you sneeze, all bodily functions stop, even your heart!
6. If colouring weren't added to Coca-Cola, it would be green.
7. Forty people are sent to the hospital for dog bites every minute.
8. Babies are born without kneecaps. They don't appear until they are two - six years old.
9. The average person over 50 will have spent five years waiting in lines.
10. The toothbrush was invented in 1498.
11. The average housefly lives for one month.
12. 40,000 Americans are injured by toilets each year.
13. A coat hanger is 44 inches long when straightened.
14. The average computer user blinks seven times a minute.
15. Your feet are bigger in the afternoon than any other time of day.
16. Most of us have eaten a spider in our sleep.
17. The real reason ostriches stick their head in the sand is to search for water.
18. The only two animals which can see behind themselves without turning their heads are the rabbit and the parrot.
19. John Travolta turned down the starring roles in An Officer and a Gentleman and Tootsie.
20. Michael Jackson owned the rights to the South Carolina State Anthem.
21. In most television commercials advertising milk, a mixture of white paint and a little thinner is used in place of the milk.
22. Prince Charles and Prince William never travel on the same aeroplane, just in case there is a crash.
23. The first Harley Davidson motorcycle built in 1903 used a tomato can for a carburettor.
24. Most hospitals make money by selling the umbilical cords cut from women who give birth. They are used in vein transplant surgery.
25. Humphrey Bogart was related to Princess Diana. They were seventh cousins.
Now for the answers ...
Trivial Pursuit answers
They are all true. Now go back and think about no. 16!
Jan's jokes
Why did the boy eat his homework?
Because he thought it was a piece of cake!
Why do seagulls fly over the sea?
If they flew over the bay they would be bagels!
ME Counselling Service
Susan White Dip.Couns.Dip.RSA.Dip.Sup.
Alan White Dip.Couns.Dip.RSA.Dip.Sup.
Tel No: 01623 635746
Email: susanwhite128@sky.com
Please note new website: www.mentor.hostse.com
Membership Subs
A gentle reminder from the treasurer: if your membership subscription (£5) is overdue, please send a cheque payable to Cambridge ME Support Group to Thora Blondal, 206 New Barns Avenue, Ely, CB7 4RG.
Member Contacts
From time to time we get members contacting the committee asking if we can visit or make regular contact with them. Unfortunately we feel as a committee that if we do this for one member we should be able to do it for all of you, but due to either being sufferers of ME ourselves or being carers we just don’t have the time or energy.
However, we’ve taken an idea from Action for ME and decided to try a contact scheme - if you want to get in touch with other members, send your contact details to a committee member and we will publish them in the newsletter in our ‘Contact Column’ - then it’s up to you to pick up a phone, write a letter or send an email to whoever you want in the column. Please remember this newsletter gets posted on our website too so if you don’t want your information there, let us know when you give us our details.
The Cambridge ME Support Group takes no responsibility for the members who contact you.
Current contacts on the list are:
Mireille Depledge 01223 416326 (10am-6pm)
Bryony Smith brysmith3@hotmail.com
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