Sample newsletter

READING AREA ME SUPPORT GROUP
NEWSLETTER
December 2006 Issue 68

New members

Wishing you all a Happy and Peaceful Christmas and a Healthier New Year.

Welcome to new members Emma Sanders, Suzy Gardner, Ken Manley, Linda Ferrara, Sally Ager-Harris, Karen Ward and return of old member Roz Henfrey.


Congratulations to Hayley on the birth of a baby girl Piaria Summer, arrived on Aug 27th, 5lbs 9oz. Mother and baby doing OK, although the ME symptoms have now replaced the bloom of pregnancy.

We would like to cover The ATP Profile from Dr Myhill in a future newsletter. If you have personal feedback regarding this test please forward to Eileen

Future Meetings

Please make a note in your diary now:

We are short on offers of where to host meetings – Any volunteers please contact Eileen. Thanks to Julie and Lyn who are our main options.

April 18th (Prov.)11.00 – 13.00 or 7.30 – 21.30 At Lyn’s John Hoggett will talk on Pacing - If interested please let Eileen know which time would be convenient or If anyone else would be happy to host this talk please let Eileen know

Contact Phone Numbers

We have several members, who are available for you to ring up for a chat, details are on each newsletter, but not on this one for security reasons.


Group News

ME Meetings

Dr Samways Talk – 13 of us attended this interesting talk at Julies. It was good to hear a GP with an understanding of alternative ideas causing heath problems. Thank you to Julie for hosting this. (Phil is writing up the Talk)

Prof Puri Lecture – Phil, Eileen and Lyn’s Mum and Dad, along with about 50 others attended the talk at Guildford .It was great to hear a professional express a belief in the physical nature of ME with his research work using VegEPA. It was rather technical and run on longer than expected but it was good to have the opportunity to have a question and answer session at the end. (Phil is writing up the Talk)
The Renaissance – 5 of us enjoyed us a get together for a cuppa and chat.

The Library

Many thanks to new member Karen who has volunteered to house the library from January. To borrow items outside of meetings please contact Karen.

New additions to library:-

Prof. Malcolm Hooper – Engaging with ME + Dr Bruce Carruthers – Canadian Guidelines Notes with 2 DVD’s of Talks Feb/Mar. 2005 (from Kate T)

Fundraising

Please continue to save Used Stamps:- Allow a ¼ - ½” border around the perforations. and recycle Cartridges and mobiles:- http://www.cellforcash.com/ - cash for mobile phones http://www.mopay.co.uk/index.asp - cash for cartridges http://www.empties.co.uk/

Have a cuppa - £25.00 raised from refreshments at meetings during the year has been sent to Kerr’s research.

Book Sales - £17.00 raised.

Elaine’s Cards – Total of £12.00 raised. Many Thanks to Elaine for her contribution of cards.

Afme Xmas Cards - £9.00 raised – Thanks to Sarah for dealing with the order

Janet’s Handmade Xmas Cards- See picture of design in Sept news - Each is about 6"x 4" with a 3DChristmas tree on the front and the message "Merry Christmas" on a double layer inside Cost £1.00 each plus P+P 50/50 for the group and ME research. £17.00 has been raised so far. Many Thanks to Janet for financing the making of them.



Media Coverage

Radio Berks.


Fundraising Stamps/cartridges by Miriam

GP Survey details by Eileen + Kate T phone in
Miriam talked about how her ME has affected her – GP account + phone in
(recorded on tape – copy in library) – If you listened you would have been angered about Dr Clifford’s view that ME is part of the spectrum of Depression - Email sent by Eileen concerning the physical nature of ME for Dr Clifford’s benefit.

Press Coverage:-

Reading Chronicle – GPs back groups call for special ME clinic
ME Essential - Reading group wins offer of joint clinic study
Wokingham Times – Fundraising stamps/cartridges
Reading Post – Oct 25th – Jonathan Hales Real Life Art. + Reply letters Nov 1st/ 2nd
(Deb has typed press coverage articles – see separate attachment to newsletter)


Campaign for Improving CFS/ME Services

Build Doctor’s Training Meeting – Bracknell PCT

Thank you to volunteers, who changed at the last moment as previous volunteers unable to help - Kate C, Phil and Nikki joined Eileen to give out over 80 packs containing Afme Guidance+ leaflet, Canadian Guidelines + CD compiled by KateT (with Meridian coverage + other ME info.) to GP’s and Community nurses.

The event was a mental health education day alongside lectures on dementia which was a well attended choice. 20 interested professionals listened to the lecture by Dr Shepherd, who put them right as to the physical nature of the illness, covering some of the content of the purple ME Assoc. Booklet (some copies available free if requested and P+P covered - from Eileen)

Thank you to Ann for arranging this with the PCT


Kate T and Eileen at Reading TIPS Nikki, Kate C, Phil and Eileen at Bracknell
BUILD Training Day Meeting with Reading PCT

After persistent emails/Tel. calls a meeting at Reading PCT took place on Oct 17th with Commissioner for Berks West, Fiona Kenyon (FK), Physio Lesley Holmes (LH), OT Margaret Preston, A PALS rep. and Rep.from East Berks. (Katherine Scott, from mental heath as no commissioner in place yet with reconfiguration).

A grueling 2 hour meeting followed with Eileen and Cathy presenting the case for improving CFS/ME services in Berkshire. Thankfully LH was very supportive of care needed, as our fear would have been whether FK would have taken on our concerns otherwise. Discussion with those present follows.

FK has now taken on board that there is no provision of CBT since Jan 06 (by providing email evidence from Simon Enright. She is looking into future provision as the Berks. Priority statement states this as a treatment along with GET.

GET is provided by Community Physio and as LH stated there is only 1.2 of a physio for Berks. And there are rarely referrals! So hardly a provision and definitely not by a physio with specialist interest in ME.

FK - Where appropriate there was onward referral to the Oxford Centre for Enablement (Eileen disputed as shown in the case history from the dossier that Dr Wade stated that provision for ME patients from Reading was not practical in Oxford) and in some cases via the Case Review Committee to the National Centre for ME. She stated that tertiary referrals to specialists out of area are possible provided CBT/GET has taken place in area. Cathy, peer reviewer for NICE, provided a summary about the draft which still advocates CBT/GET as first treatment. Cathy was concerned that Fiona’s view of CFS/ME patients was that they ‘had’ to have CBT and GET in order to ‘qualify’ for any additional services. Cathy explained that the draft NICE clinical guideline emphasized the importance of each patient having an individual care plan, with all decisions being made in partnership, with refusal of a particular treatment never being held ‘against’ the patient concerned. Feedback from group members/GP survey is that referrals are not funded.

This need for CBT/GET to have occurred maybe why referrals are unlikely to occur.
The importance of having a designated member of staff to co-ordinate care for each patient was stressed. This could be a nurse-practitioner with the ability to prescribe. A GP with a Special Interest were regarded by Fiona as too costly. A consultant referral costs £150, not that there was any inkling of provision for a ME specialist (Suggestion of a present Neurologist specialising was voiced).
A mixture of one-to-one and group education about self-management/’pacing’ for mild to moderately affected patients was seen as practical and cost-effective. The role of an ‘Expert Patient’ type course (e.g. as run in Newbury) for CFS/ME patients was discussed. There would be limited access to CBT delivered by a clinical psychologist for a number of patients each year.

FK was initially very negative about including severely affected patients (though NICE stresses that they should be offered services at home or by telephone). LH explained about the provision of care in the community for MS patients with Specialist nurse worked (LTC incentive) It was eventually agreed that they should be catered for. The financial constraints affecting the NHS at present were stressed by Fiona as the over-riding consideration, irrespective of NICE’s eventual recommendations.

She was also negative about the prospect of revising the Berkshire Priorities Committee statement once the final NICE guideline is published
It was agreed that the new service needed to be piloted (FK being the only commissioner present, it would be in Berks West). Estimates provided by NICE on the prevalence of CFS/ME in the population might not be a reliable guide to the actual demand for a new service in Berkshire. (In accurate figures in GP survey due to poor response, CMO’s figures therefore disputed) There was no take up to the PCT conducting their own GP survey.

A team including the physio/OT dept will visit nearby established clinics i.e. Oxford, Surrey and Bath ones were of interest, to report back at FU meeting Dec. 6th
It was stated that the GPwSI who had been in touch with Eileen could not attend the next meeting; it could compromise any subsequent tendering process. However, the door was left open for Maria Shortis from AfME to be invited, as her expertise would clearly be valuable, when discussing the detail of setting up the service pilot.
John Holt, Neurological Alliance Berks. West has made contact and has been invited to attend.



ME Morsels

See Change of Time/Venue highlighted:-


Marcus’s Posturcise class – An application to Wokingham PCT has been sent, via a Project from Wokingham Voluntary Action, to request funding in the next financial year for this class.

Email from John Hoggett – Pacing - is the best “psychological treatment” for ME. Coaching on Pacing is available from John. For more details contact : – hogget@hotmail.com 0118 9415144. John who partially recovered from ME will talk at a ME Meeting in April.


Herbs and ME – Handout from Talk by Freda Miller


Introduction You may be surprised, relieved, excited, sceptical – I hope at least interested! – in the fact that many ME sufferers respond to treatment with herbal medicine combined with attention to and possible modification of their diet and perhaps the addition of nutrient supplements.

ME or CFS is a complex condition involving interactions between infectious, environmental and emotional stressors which lead to dysfunction of the immune system. If a patient is extremely debilitated many treatment options are ruled out – exercise may be exhausting and all but the simplest foods unsettling. Sometimes good results can be obtained by focussing on causal factors such as intestinal dysbiosis (imbalance of the gut flora), allergies, food intolerances, toxins e.g. pesticides, or recurrent infections.

Experience has taught me that herbal medicine given in tincture form ‘little and often’ is sometimes the only way to start, with initial ‘drop’ doses building up to the ‘normal’ dose of 5ml three times or 10ml twice a day.

Herbal Medicine

Although a herbal prescription is always individually tailored for each patient, one for ME would normally include tonic and adaptogen herbs. Tonics help revitalise and correct immune function and adaptogens increase our response to stress. Tonics might include herbs such as Oats (Avena sativa) which have been traditionally used in convalescence to support the immune and nervous systems; St John’s Wort (Hypericum perforatum) does both these things as well as being anti-viral. Other immune system herbs which might be used include Huang Qi (Astragalus membranaceous), Withania (Withania somnifera), Sarsaparilla (Smilax officinalis), Siberian Ginseng (Eleutherococcus senticosus) and Licorice (Glycyrrhiza glabra). Licorice also supports the adrenal glands which are important in our response to stress. Herbs such as Vervain (Verbena officinalis), Lemon balm (Melissa officinalis) and Skullcap (Scutellaria laterifolia) are great herbs for supporting the nervous system (nervines).

The remainder of the prescription would include herbs to treat other conditions, such as Chasteberry (Vitex agnus-castus) if the patient has menstrual problems or Chamomile (Matricaria chamomilla) if digestion is upset. Hawthorn (Crataegus oxyacanthoides) if there are heart or circulatory problems and Dandelion root (Taraxacum officinale radix) for constipation and liver support, for example. Echinacea spp might be used to help with recurrent infections.

In addition, it is often useful for an ‘acute’ mix to be on hand for use should a cold or flu develop and the herbalist will also ensure above all that sleep and rest are adequate perhaps using a sleep mix.

I should add here that, although I have listed herbs which may help in ME, it is not a good idea to treat yourself. A medical herbalist, as I mentioned before, will devise a mix of herbs specifically for you, taking into consideration any medicine your doctor may be giving you and taking account of everything that is going on with your condition initially and making subtle adjustments as things progress.

Nutrition

For all of us, the overall aim is to ensure we have 5 portions of fruit and vegetables every day, wholegrain cereals, the correct fatty acid (omega3:omega6) balance by eating oily fish (this includes salmon!), adequate calcium from dairy products and plenty of water.

However, this is easier said than done if one’s appetite is below par or if absorption is poor. A high potency multi vitamin and mineral supplement would probably be advised together with vitamins C and E, fish oil supplements (to reduce inflammation) and possibly extra calcium and magnesium. A vitamin B complex (especially B6) supplement may also be useful, as may Coenzyme Q10.

Exercise

I take great care to caution patients regarding exercise. This should be kept well within your resources – learn to ‘bank’ your energy and try never to ‘go into the red’ – there is always the temptation when we feel good to do just that little bit more.

In Conclusion

Although this is a relapsing and remitting condition for most, individualised treatment marked by extreme gentleness and patience can be rewarding.

Freda A Miller BSc (Exon) BSc (Wales) MNIMH MCPP
April 2003

Freda Miller is a qualified Medical Herbalist practising in the Reading and Marlow areas. She is happy to visit people in their homes if they cannot get to see her. Do give her a call on 0118 986 2016 for a sympathetic chat.

The Princess Royal Trust Carers Service

The Princess Royal Trust Carers Service provides support and information to unpaid or family carers – people who give help and support to a partner, child, relative, friend or neighbour, who could not manage without their help. This could be due to age, physical or mental illness, disability or addiction.
The Carers Service provides:
• information on issues such as benefits and dealing with social services
• a quarterly newsletter
• a confidential counselling service
• carers' support groups
• social activities
• learning opportunities

All of these services are free to carers in West Berkshire, Reading, Wokingham District and the Windsor, Maidenhead and Ascot area.

The Princess Royal Trust Carers Service is able to offer confidential one-to-one support and information by telephone, e-mail or in person and can answer questions you may have about your caring role.

The Princess Royal Trust Carers Service operates a drop-in service at 6 Cross Street, Reading, every morning (except Thursdays) between 10am and 1pm and a carers’ telephone helpline on 0118 950 5177. The Service works with carers from ethnic minorities, rural carers, older carers and carers of those with mental health problems.

Ring the Carers Helpline on 0118 950 5177 for further information and to register with the service for free newsletters.

The Princess Royal Trust Carers Service, 6 Cross Street, Reading, RG1 1SN. Carers Helpline 0118 950 5177

Office and administration 0118 950 3941 Fax 0118 958 9332 e-mail: information@prtberks.plus.com Web site www.carers.org/berkshire Write to FREEPOST, PRT Carers Service.

Disclaimer: Opinions expressed are not necessarily those of the editor/group contact/other members. Treatments mentioned are tried at the reader’s own risk and no responsibility is held by the above for negative outcomes.
Thank you for your contributions: - Janet, Phil, Cathy, Ann, Jonathan, Sally and Deb. A special thank you to Barry for helping with printing the Canadian Guidelines for GP training

Post Script to Dec 06 Newsletter

Sorry for delay in sending out feedback from the recent PCT Meeting.
Unfortunately Cathy who took the notes was developing a Migraine then and it has continued since. So have decided to give a brief summary. Full account to be provided at a later date.

Meeting with Commissioners Berkshire West and East

The outcome was that following a visit by the interested Physio to Bath/Bristol Clinic Commissioners were keen to support this model of service for low to medium sufferers and propose looking at setting up a Berkshire wide service based on this structured model. (DVD of Bath/Bristol Service supplied by Maria Shortis - in Library)

A pilot scheme is to provide 2 courses a year (2 hourly sessions over 6 weeks) in the new financial year – April 1st 2007.

CBT and GET as per the Berkshire Priority Statement will be provided.
CBT referrals will be by private tender, referral via the Commissioners (Fiona Kenyon – Berkshire West Pct, 57 – 59 Bath Rd, Katherine Scott – Berkshire East PCT, King Edward VII Hospital).

GET will be by referral to The Community Physio service (Newbury based for Berks West, Not sure where based for Berks. East unless perhaps a group member knows? Will enquire from officials)

Reply from Jonathan:-“I had a home visit from a Community Physio about a year ago. They are (or certainly were then) based at the Great Hollands surgery in Bracknell. Tel. 01344 786957. It wasn't hard getting to see one. There was little waiting list and one came at quite short notice. I think it only took about a week.”
Physio Sheila Bond was in agreement with us that this would be activity management, as opposed to an exercise regime, to enable sufferers to meet their full potential within the limitations of their illness.

It was also noted that in some cases Graded Exercise therapy and/or CBT were not the most successful treatments.

If you should try for a referral please feedback the response to its success and whether it was ME friendly, so we can feedback any failings to the PCT.

Referrals out of area will only be poss. once CBT/GET has been tried in area.

Perhaps those who have not yet tried CBT would like to inundate the commissioners with referrals to illustrate a need? And GET as Activity Management.

This is a very limited service but at least a start, only touching the tip of the iceberg for providing ME services, so if you are not happy with the commissioner’s decision please feel free to let them know.

Please note amendment: - Recycling In Aid of Reading Area M.E. Support Group
Send used stamps/cartridges/mobiles to:-
20 Welby Crescent, Winnersh, RG41 5SW using http://www.empties.co.uk/ - cartridges http://www.mopay.co.uk/index.asp - mobiles
Or recycle direct at www.recycle4charity.co.uk by having envelopes sent to you


Future Reminder: - As last year - Xmas Card recycling in aid of RIME (Research into ME) www.erythos.com/RiME? Also old Birthday cards and old calendars.
Any used cards, post front of cards to save postage to: - 10 Carters Hill Close, Mottingham, SE9 4RS


From Sally:-

Here is the Foggy Friends website www.foggyfriends.org - free to join and going through the different threads I have found some support and generally friendly information and chat.

From Roz :-

‘Chat Therapy’: I was prompted to start this type of group work because I saw a need for a channel, where people could express feelings, in a caring environment that was not pure counselling. It is a new, start-up group open to all who want to meet up and express themselves, using the 3 main core conditions. For non-counsellors ‘core conditions’ and ‘contracts’ will be explained at a 15-20 assessment which is done prior to joining. Assessment is necessary to avoid non suitable personality’s e.g. very angry people. It will be self regulating, in that if one member has an issue with another member they must address it, hopefully within the group. However, as facilitator I will step in when/if necessary. So it is about supporting each other with empathy and congruence but with respectful discussion and positive regard. There will be a group contract: confidentiality, time-keeping, respectful of sharing time etc. Later, if the group agrees, we can add creative approaches to expression and self discovery, such as reading favourite poems, art therapy and journaling to the time spent together.

Cost: £8 per 1.5 hrs. including tea/coffee. Meetings will be at my home in Crowthorne during the daytime.

Roz Henfry (Advanced Diploma in Integrated Humanistic Counselling)
Contact: - 01344 775202 or email support@rozzy.org will any queries.