Our independent group caring throughout the county of Derbyshire

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First Words…

Summer has arrived! Indeed Midsummer Day has come and gone and left plenty of fine weather with us. Long may it last! Since our last edition a new government has arrived and, not surprisingly, has indicated that the next few years will be difficult for all of us - with cuts, new legislation and changes to many aspects of our lives. Its first budget seems to suggest that everyone’s overall spending power next year will be reduced by about 3%. It’s very early days yet to see what the real impact will be but welfare benefits seem to be destined for close scrutiny and likely change, particularly Disability Living Allowance (DLA) and Employment & Support Allowance (ESA). We will try to keep you updated on any of the proposed changes that may have a particularly significant impact on those with ME/CFS. No doubt the national charities, Action for ME and the ME Association will also be lobbying government to ensure that the situation in relation to ME/CFS is fully understood. For the time being, if you need to complete any Department of Work & Pensions (DWP) forms to progress a claim, ensure that you seek advice from a welfare rights adviser before you do so. Our Spring edition contained contact details of local advisers and similar information is available from our Contact Line.

Summer it may be here but the World Cup in South Africa’s winter rumbles on, sadly without England of course (presumably St George’s flags can be recycled…?) and the nation has just completed its annual fortnight of tennis interest at Wimbledon… The combination of strawberries and sunshine is a beneficial one for many of us.

This edition reports on our Laughter Therapy session in May and looks forward to the July meeting on Shiatsu & Qigong on 17 July and our September meeting on the Lightning Programme. We very much hope you are able to join us on both occasions – they are sure to be very informative and enjoyable. Until then, enjoy your summer but stay cool!  

At the AGM in March no new Committee nominations were received and all existing Committee members were unanimously re-elected. The Committee remains much smaller than is desirable but will continue to do its best to serve the members in the best way it can despite its limited resources. For the coming year Philip Whitt & John Smith will serve as Joint Vice-Chairs, John will also continue as Secretary and Pat & Bill Gadsby will continue to fulfil the important Treasurer role. Pauline Ostler will act as Minute Secretary and provide support with refreshments at Group meetings. Valerie Hilton will host Committee meetings at her home and will serve on the MED Contact Line together with Margaret Jackson (not on Committee), Angela Keightley (not on Committee) and John Smith. Roy Woodward (not on Committee) will continue as our website co-ordinator (and if you haven’t had a look at Roy’s updated version of the MED website, please do so – it is excellent). Philip and Mary Whitt will deal with our membership records, organise distribution of written communications and email bulletins to members. In his spare moments, John will do his best to edit the newsletter - hopefully helped by written contributions from MED members on anything you’d like to write about.

The members’ informal discussion which followed the AGM was most enjoyable and we were joined by Meesha Smith, a Masters student at the University of Derby who is producing a thesis on the impact of ME/CFS on people’s lives. Meesha was able to arrange several interviews with MED members whose personal experiences would help to inform her study. We hope to hear more from Meesha about her thesis later in the year.

The Committee is still pursuing the idea of obtaining volunteer support from Community Action Derby (formerly Derby CVS) to help with certain aspects of its work but this is proving to be a longer process than first expected. Support from MED members is also greatly appreciated so if you’d like to be a volunteer supporter to help with specific things from time to time, please contact any Committee member at any time.      

ME Derbyshire again sponsored Professor Chris Ward, Clinical Lead of the Southern Derbyshire CFS/ME Service to attend the 2010 Invest in ME (IiME) conference on 24 May. This conference covered a range of recent research projects on the illness the being carried out around the world. This sponsorship is at no cost to MED as it is primarily an incentive by the organisers to encourage a wider range of medical professionals to attend.

In 2008 Jo Eadie of the Laughter Network introduced us to the benefits of laughter to help improve relaxation, release endorphins, boost our immune systems etc. On Saturday 22 May, John Hipkiss (aka Laughing John), a colleague of Jo’s joined us to lead a further laughter therapy session. In his introduction John mentioned that the value of laughter had been explored in the book: “Laugh For No Reason” by Dr Madan Kataria, who was instrumental in founding the Laughter Yoga movement.

We were all sitting in a wide circle as John first of all encouraged us to gently shake any tension and tightness out of our hands, arms, shoulders, neck, legs and feet. He then asked us to progress through a series of original laughter-inducing activities including roaring, growling, passing imaginary things back and forth between each other with accompanying exaggerated “whooshes” and “haahs”.

Merely describing these simple actions in words can’t really do justice to the smiles, mirth and unrestrained laughter that they engendered. The process is simple – the results quite remarkable. At one stage we were asked to represent a favourite animal (daft really – but that was the point!) and the range of animals selected was imaginative, to say the least. We all know that laughter is infectious but what our session proved yet again that it can also be encouraged and be beneficial to our well-being. For just over an hour Laughing John got us to shed some of our inhibitions and experience the effect of laughter on our own condition.

Towards the end he asked how we felt about what we had been doing. Initial reactions included “relaxed”, “enjoyed it”, “feel brighter”, “interesting”, “enlivened”, “not so tense”, “fun”, “tiring but worth it”. John pointed out that although laughter therapy sessions work particularly well in a group, the beneficial power of laughter can also be released if you are on your own. He suggested that a few gurns, grimaces and growls in front of the bathroom mirror can help to get things started for the day. Worth a try instead of singing in the bath…?

There was another meeting in the chapel during the afternoon – the Church Men’s Group was having a demonstration of a computerised aircraft flight simulator! Fortunately, they’d completed the take-off bit (with very realistic sound effects!) before our session started and we were still going strong when they landed. However, quite a few of the Saturday afternoon pilots seemed fascinated by the sounds and laughs emanating from the Wesley Room as they dispersed

Displays
ME Derbyshire displays were provided for the Derby Central Library and Newbold Library in Chesterfield (thanks to Michele Young). The Derby Central Library display was positioned by the exit to the Library so that all visitors had to pass it (and hopefully look at it) on their way out. 30 MED blue information leaflets & membership application forms were provided in a box attached to the display. All the leaflets had been taken when the display was collected on Monday 17 May.

Letters to Local Newspapers
A letter about ME Awareness Week was sent to seven paid-for local newspapers in the Derbyshire area and we believe it was published in all of them.

MED posters
During the week leading up to ME Awareness Week, 22 posters were personally delivered to Practice Managers of GPs surgeries in parts of Derby and mid-Derbyshire who had not received them in previous years.

ME Awareness Prayer
Requests made to several places of worship in Derby & South Derbyshire to include the prayer in intercessions.

MED website
Although no specific ME Awareness message was included on our website, there was a noticeable increase in enquiries via the website during May, not all of which were membership enquiries. However, the MED website address was featured prominently in the displays, the letters to newspapers and the posters as mentioned above. Telephone enquiries, again not all about membership, also increased slightly following the Awareness Week initiatives

Further Coverage…
Now that the main MED display panels have been updated and that there seems to have been a reasonable level of interest from people seeing them in Derby Central Library, we are seeking display space during the remainder of 2010 for at least one week (preferably longer) at other libraries serving larger areas, eg Ilkeston, Long Eaton, Belper, Alfreton, Ripley and other local libraries in Derby city suburbs.

If you have a suggestion for a venue in your area please let John know. The MED displays can be delivered, assembled and collected free of charge anywhere in Derbyshire.

MED Members wishing to get advice on Disability Benefits can phone Dial UK at  01302 310123. Dial UK is linked to the Disability Alliance, for which Committee member Mary Whitt holds membership on behalf of MED.

This year is the centenary of the death of Florence Nightingale, who was raised at Lea Hurst, near Cromford, worked at the former Derbyshire Royal Infirmary and became known as the Lady of the Lamp during her nursing service in the Crimean war. It is believed that Miss Nightingale probably suffered from a form of ME and spent much of the later part of her life in bed as a result of her illness. She was born on 12 May and this is one reason why the date was chosen to mark International ME Awareness Day each year.

A team of people in Derbyshire is preparing an exhibition to mark the 100th anniversary of her death. It will feature material donated by the Florence Nightingale Museum in London. Events are being held throughout the county and include music, dance films, workshops, walks and talks. A dedicated website www.illuminate2010.com has been set up to honour the founder of modern nursing. The Florence Nightingale Exhibition will run throughout August at the Gothic Warehouse, Cromford Wharf.  A service will also be held at Derby Cathedral on Friday 13 August - exactly a century after Miss Nightingale died. (Free tickets for the service will be available from the Cathedral Coffee Shop, opposite the Cathedral from mid-July).

The Florence Nightingale Museum in Lambeth Palace Road in London has recently re-opened after a £1.4 million refurbishment. Westminster Abbey’s Nurses’ Chapel has also been renamed the Nightingale Chapel. The museum tells Florence’s story, focusing on her Victorian childhood, the Crimean War and her later years as an ardent campaigner for health reform. On display will be a Turkish lantern that it is believed she used in Scutari Hospital in the Crimea. This led to her becoming known as the Lady of the Lamp.   

As you will see in the Dates for Your Diary page, at our September Group meeting we have arranged for Janice Benning to talk about The Phil Parker Lightning Process (LP). Janice is a trained practitioner in LP and will be able to outline how it works and will be happy to answer our questions about it. This is not a session to “sell” LP to any of us but a genuine opportunity to learn more about it from someone who runs the programme.
To make the most of this occasion, you may wish to identify some questions in advance that we can put to Janice to help her build the talk around those issues that are of particular interest to us. There is some information about LP on the internet www.lightningprocess.com but this does not always deal with the things about it that we would really like to know.  

A brief outline of LP is summarised below for your initial information:

The LP is described as a completely new approach for resolving life’s commonest and most debilitating conditions. But it is not a therapy; it’s a training programme that combines concepts from NLP (neuro-linguistic programming), life coaching and osteopathy. Phil Parker, the developer of LP, is an internationally renowned lecturer, therapist and innovator in the field of personal development. His core principle is that people are geniuses with amazing skills, qualities and talents and his aim is to help as many people as possible to find that out about themselves. He researched why some people with the most debilitating problems seemed to respond very well whilst others seemed to struggle to get any change. The basis of LP is how to train those who are “stuck” to get “unstuck”.

LP is tailored to the individual and, as a training programme, it can help people to change old patterns of thinking which in turn can influence their health and happiness.

The key steps are:

The LP experience is that new effective patterns can replace the old ones very soon after starting.

LP students have to apply the lessons for themselves to achieve improvement.

Potential students need to think long and hard about whether they are ready to take the training.

LP is an interactive journey of discovery. It takes about 12 hours to unfold over three consecutive days in a group setting. Afterwards there are one-to-one follow ups, usually by phone.

Once learned, the LP remains with you for life. It is a new way of using your brain and this can be a bit unfamiliar to you in some situations.

How the LP actually works is difficult to describe in a short space but that is covered in the first LP session.

LP is not allied to, or developed from, Reverse or Mickel Therapy or Cognitive Behavioural Therapy (CBT). Neither is it another name for Positive Thinking.

This brief summary (prepared by the editor of the InforMED newsletter from published LP material) is to provide a basic background to enable you to frame appropriate questions for our September speaker. If you have any questions about LP, please send them to John by 20 August by email This e-mail address is being protected from spambots. You need JavaScript enabled to view it post or phone (see page 2 for contact details) so that we can pass them on to Janice to include in her talk/discussion where possible.    

The last two editions of Interaction, Action for ME’s magazine, contained some very interesting responses to the frequently asked question: “Do people recover from ME/CFS?” Here are just three of those responses:

DR CHARLES SHEPHERD
The simple and very optimistic answer to this question is a definite yes, and the chances of doing so appear to be much better for children and adolescents.  Receiving an early and accurate diagnosis, coupled with sensible management advice during the first few weeks and months of ill health, also appears to be very important when it comes to outcome/prognosis.  Other factors that may have a beneficial influence on prognosis appear to be having a small number of key symptoms and starting with an acute infective onset rather than gradual onset.

But I have to be realistic here as well.  All the research evidence, as well as the anecdotal evidence, indicates that while full recovery does sometimes occur, ME/CFS is an illness in which the more common outcome is for a degree of recovery to slowly take place, after which the person then settles down to a fluctuating level of physical and mental functioning that is significantly below what they are used to.


So my advice to people who ask this question is to be both realistic and optimistic.  The chances are that some degree of recovery will almost certainly occur, although full recovery may not be possible.
But never give up hope – because as I know from personal experience, it can be several years into this illness before any degree of real recovery actually starts to occur.

Dr Shepherd is Honorary Medical Adviser to the M.E. Association

TONY GOLDING
Just as different therapies seem to help different people with ME, recovery can have different meanings.  In everyday usage, recovery surely means no residual symptoms and no risk of relapse if you do too much.  How many people grappling with ME reach that nirvana?  Only a few in my experience, based on the 19 years I have been Chair of my large local support group in West London.  But local support groups are not representative of the ME population at large, inevitably having a bias towards those who have been ill for a long time (the average length of illness in my group is 16 years).

Many people with ME do make significant progress in their health over time, such that a reasonable proportion are able to resume a normal or semi-normal life, even if they have not achieved full recovery. In my experience, people in this category often tell others they have recovered despite having residual symptoms, such as pain.  And why not?  In practical terms, they are free of the constraints that ME imposes on their life.  They are simply affirming to the world that they are able to move on.

Tony is a Trustee of Action for M.E. and Chair of the West London Network MESH

COLIN BARTON
One interesting development that we have noticed in our area is that many more people with ME/CFS these days are falling into the mild to moderate category and improving significantly with the help of various approaches.
As most professionals are recognising the illness sooner and administering symptom control along with giving sensible management advice, people seem less likely to slip into the chronic, more severe illness.  In areas such as ours where there are specialist NHS services, people are being diagnosed sooner and professionals giving good early advice more often.  It makes sense to intervene earlier rather than later to prevent chronicity and severity of illness.

Colin Barton is chair of Sussex and Kent ME/CFS Society

Published by the British Healthcare Trades Association, the “Get Wise” leaflets are useful to wheelchair and mobility scooter users, as well as those people thinking of buying a stair-lift. Three popular leaflets: “Get wise to using public transport, “Get wise to using electric scooters and wheelchairs” and “Get wise to buying a mobility vehicle” have been re-designed and re-launched. There are more recent leaflets too. A free sample of  each is available on request from the BHTA  on 020 7702 2141 or by email This e-mail address is being protected from spambots. You need JavaScript enabled to view it

A recent university study revealed several interesting factors about water:

Midnight hunger pangs can be alleviated by a glass of water
Lack of water is a significant trigger to daytime fatigue
Preliminary research indicated 8-10 glasses of water each day could significantly ease back and joint pain for up to 80% of sufferers
It only needs a 2% drop in overall body water to trigger short term memory loss/fuzziness, trouble with basic arithmetic and difficulty focusing – especially on screens

(Thanks to the Sheffield ME Group for providing the above two articles)

The 2010/11 edition of the Disability Rights Handbook published by the Disability Alliance has been added to the ME Derbyshire Library. The Guide to Making a Claim for Disability Living Allowance (DLA) & Attendance Allowance AA) has also been obtained. Both publications will be available for reference at future MED Group meetings.  

This summer Action for ME will follow up on its 2008 Health and Welfare survey by further investigating the experiences of people who have tried:

Experiences of other approaches such as cognitive behaviour therapy (CBT) are not being surveyed on this occasion.

The results of this survey will inform AfME’s response to the PACE trial, expected this autumn, and any subsequent review of the NICE guideline.

The consultation will close on 6 August 2010. If you wish to take part in this survey, please contact AfME Policy Officer Tristana Rodriguez on 0117 930 1325 and she will post a form out to you. Alternatively you can fill it in online at www.afme.org.uk until the deadline date.


There is an interesting video on www.sleepydust.net which is principally aimed at families of people with ME and is part of an attempt to address issues of ignorance and stigma that are faced by those of us with ME, even from those who are close to us. Just click on “Watch Video” to see it.

Thanks to everyone who wrote to their parliamentary candidates and/or recently- elected Members of Parliament, enclosing the AFME election manifesto for ME/CFS. As far as we are aware, not one of the newly elected MPs in Derbyshire has yet replied. Hmmm……….

 

 

Forthcoming Group Meetings:

Saturday 17 July 2010:  Complementary Therapies
An Introduction to Shiatsu & Qigong  with Joyce Sawford
Shiatsu comes from Japan – the word literally means “finger pressure” – and comes from the same roots as acupuncture, but no needles are used. The client remains fully clothed and the session can be done in a seated position or lying down.
Qigong is an ancient Chinese practice for calming and restoring the body, mind and spirit. Simple arm movements are taught and these coincide with natural in and out breaths. This is usually done in a standing position but can also be done seated.

It promises to be a very interesting afternoon. Looking forward to seeing you there!

Saturday 18 September 2010: The Lightning Process with Janice Benning
A talk and discussion to uncover the facts about this training programme which has helped some people with ME/CFS (please see background article on page 6 of this
edition and take the opportunity to put forward your questions in advance)

Saturday 20 November 2010: Update from the Southern Derbyshire CFS/ME Service
with Professor Chris Ward and Boz Smith

 

Our Summer Afternoon Tea is expected to take place later in the summer – date & details soon

The planned visit to Weleda Organic Gardens will not now go ahead. The ground conditions are not suitable for those with mobility difficulties. Arrangements have been made instead for Weleda’s Head Gardener to give a talk about the gardens at our meeting in March 2011. More later.