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Welcome to the website of South Molton ME Support Group
We offer support, information, whatever help we can manage, and the warmth of friendship and understanding to people with ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and FMS (Fybromyalgia Syndrome) within a large local area covering the east of North Devon, the north-west of Mid Devon and south-west of Somerset.
We have links with other local support groups covering the west of North Devon and North Cornwall, Torbay, Plymouth and Exeter. Please ask if you would like us to put you in touch with any of these. You will find links to national ME charities on the left and other useful links at the bottom of this page. We have worked closely with the ME Association and the Tymes Trust.
Please understand that we have a small committee, who all are dealing with the challenges of living with ME, either as patient or carer, as well as running the ME support group on an entirely voluntary basis, so there may be times when there is a little delay dealing with your enquiry, but do be reassured that we will always get back to you, and with our combined experience we can probably come up with a helpful response to virtually anything you’d like to talk with us about regarding this often poorly understood condition.
What is ME? - Myalgic Encephalomyelitis
It is often referred to as Chronic Fatigue Syndrome but CFS includes other fatigue states too. Other names used for this illness include PVFS, Post Viral Fatigue Syndrome and CFIDS, Chronic Fatigue Immune Dysfunction Syndrome, also Myalgic Encephalopathy. Our group however use the term Myalgic Encephalomyelitis, which has been in use since coined by Sir Donald Acheson in the 1950’s and defined by Dr Melvin Ramsay subsequent to the epidemic at the Royal Free Hospital in 1955. It has been recognised by the World Health Organisation since 1969 and is classified by WHO within the chapter neurological illness, G93.3. Throughout the 1990s efforts by the medical establishment to replace it entirely with the term CFS failed and following the Report of the Chief Medical Officer’s Working Group in 2002 the composite term CFS/ME was officially adopted in the UK. Health Canada adopted the term ME/CFS in 2003 when issuing clinical guidelines for diagnosis and treatment.
ME is a serious neurological illness.
There is no known cure.
It affects 250,000 people in the UK,
including 25,000 children.
Some recover after a few years,
many do not.
25% are severely affected,
housebound or bed bound,
some even tube fed,
for years.
ME is not just ‘fatigue’ - if only!
You don’t just feel tired you feel ill!
It affects people in different ways.
symptoms include:
malaise and flu like symptoms,
pain, digestive symptoms, sleep disorder,
difficulties with memory and concentration,
tender lymph nodes, sensitivity to light and sound.
All these symptoms are made worse
by physical or mental exertion
often delayed reaction up to 72 hours later,
making it hard to pinpoint what caused the relapse
or plan ahead.
Relapses can last days, weeks, months or years
What confuses friends and onlookers?
ME sufferers can look well outside -
but only go out when they are well enough,
and you don’t see them afterwards
when they pay for their exertion.
ME has had a bad press -
as there is not yet a diagnostic test,
many ME sufferers are not believed,
are told it is all in their minds,
as was the case with illnesses like MS and Asthma
before science caught up!
ME sufferers cannot live a normal life.
They are often isolated.
Even those well enough to work must ration their energy.
Many live in poverty.
Youngsters can miss out on education
and the chance to make friends,
have a career, and a family of their own.
How can YOU help?
If you know someone with ME:
- believe them!
- understand that they can seem ‘unreliable’ because the illness is unpredictable
- be sensitive enough to check with them how much they can cope with - even enjoying a visitor uses up precious physical and mental energy.
- help them to ‘pace’ their energy, to aid recovery and avoid them getting worse.
If you can, please give or help fund-raise for bio-medical
research into ME:
ME Research UK ,
The Gateway, North Methven St, Perth PH1 5PP
http://www.meresearchuk.org/
CFS Research Foundation,
2 The Briars, Sarratt, Rickmansworth, WD3 6AU
http://www.cfsrf.com/
Use www.everyclick.com/uk/meresearchuk/ as your search engine (like google) to raise money just by clicking
Further Information about ME
We have provided a brief synopsis above, but if your would like more detailed information about ME, we strongly recommend the Canadian Consensus clinical guidelines for diagnosis and treatment of ME/CFS. You can download a 28-page overview of this guideline, and see on the back cover the comments of 2 well-known UK ME specialist physicians who endorse this guideline. Download here.
If you are interested in the international consensus background to the Canadian documents, or would like to read the longer full version, or the document for FMS, go to http://www.mefmaction.net/ and scroll down to the section ‘Consensus documents’.
Our group believes the Canadian documents provide the best clinical guidance currently available in the world. In 2007, the UK’s National Institute for Health and Clinical Excellence (NICE) published it’s own clinical guidelines, which in some respects have been welcomed, but were based on a limited research review and place too much emphasis on the very limited number of large clinical trials to date, consequently over-emphasising the prescription of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) when numerous patient surveys have found these treatments to make significant numbers of patients worse, in some cases severely so. Challenges to the guidelines are underway in the High Court. You can download the NICE clinical guidelines here
If you want to look at the NICE guidance, which your GP and other healthcare providers will most likely be working to, we suggest accessing the Quick Reference Guide as well as the Guidance for Patients/Public/Carers.
You can also visit the more comprehensive websites of any of the national ME charities listed on our useful links page
South Molton ME Support Group Aim and Purposes
We aim to
- raise awareness of and disseminate quality information about ME/CFS within the wider community, including amongst health professionals,
- provide support and information to those with ME/CFS in our community and, with the use of information technology, beyond. (Our members mainly live in the area around South Molton up to Barnstaple and Braunton and the Exmoor coast but we do have others as far afield as Torrington and Cullompton and have dealt via email with national and international enquiries).
Increasingly, as awareness and knowledge improves, we see our purpose also as raising awareness about and fundraising for biomedical research into the cause of ME/CFS, which we believe could lead to a cure, to replace the palliative management strategies currently offered as treatment by our NHS
Brief History of the group
The group was founded in 1992/93 as a small, local independent ME Support Group by Mags, Sue, Ann and Margaret, after they met at a meeting arranged by Audrey Adcock in Barnstaple. These 4 formed the founding committee and led the group for some years, with the Chair changing from Mags to Ann around 2001. Jacqui joined the group in 2003 and was nominated as officer at the AGM in 2005. The group joined SWAME, South West Alliance for ME, in 2004, is a Friend of ME Research UK http://www.meresearch.org.uk/, and currently is responding to an invitation to become a Tymes Trust partner group http://www.tymestrust.org/. Because of the overlap between the two conditions, we also have a number of members with Fibromyalgia Syndrome, as well as members with ME/CFS, or with both. Both people with ME/CFS/FMS and carers are welcome.
Current and recent past activities
We hold regular meetings, most months, with upcoming dates notified in our newsletter. Meetings are informal and friendly, held at South Molton Hospital, mostly in the afternoon 2-4pm. We try to vary the day since some members cannot attend certain days of the week. Sometimes we have an outside speaker, sometimes we prepare information ourselves to discuss, sometimes we just have a social gathering. Talks or discussions last about one hour with time for drinks and chat after. Members of course arrive and leave at times to suit their personal needs. Ann coordinates whatever transport we can provide between ourselves to help those without transport get to meetings.
Meetings are followed up with a newsletter, which always summarises information and events from the meeting since we are aware there are always members who are not well enough to attend meetings and we try to help them feel included. Our newsletter is styled like a personal letter for this purpose and written so as to appear light and friendly.
Emphasis is on friendship and caring about each other, and we aim to see the lighter side of life, even with ME, and have a laugh at meetings. We love to be able to share news of improvements and recovery, and treatments or devices people have used with some success, as well as being there to support in any way we can at times of relapse or things not going so well.
We have close links with North Devon NHS Patient Involvement officers, South Molton’s health centres/GPs and complementary health clinics. A number of members have consulted Jonathan Lawrence (osteopath), Rosemary Lawrence (homotoxicologist), or learned EFT for self-help from Jacqui. We are grateful to Jonathan, Rosemary, Sarah and Jacqui of Turning Point Clinic for provision of a pamper day for members, working with us to provide Yoga for ME sessions, and for sponsorship of website production costs.
When there is news of a promising treatment we investigate ways in which that treatment can be made available more economically to members. This has happened with VegEPA capsules (recommended by Professor B Puri of Hammersmith Hospital) and with Norstar magnet products, after several group members experienced significant improvements with pain after using them. Most recently we are looking at Dr Sarah Myhill’s and Professor Martin Pall’s supplement recommendations, and the blood tests for mitochondrial efficiency of ATP production (see our news page for updates).
We have a library of useful pamphlets, books, relaxation tapes, always available on request. This includes the much-used Disability Rights Handbook, which members can borrow to refer to when filling in benefits forms etc. We also recommend members to Citizens Advice Bureau or other benefits advice as necessary.
Good communication is essential. Apart from our newsletter we make best use of whatever form of communication is available.
For those with access to email, we operate an email news service. We belong to IMEGA-e, a national ME information network for support groups and subscribe to other international email information forums, such as Co-Cure. We forward a small selection of email ME/CFS news/information items to anyone who has given their email address for this purpose, as well as the odd email joke to lighten the day! This way our members can stay at the forefront of new developments in the field both nationally and internationally.
Ann and Jacqui aim always to provide a ‘listening ear’ for those who phone, although of course within the limits of personal capacities and commitments.
We keep abreast of national initiatives and participate where possible. For example, we have contributed a written response to the parliamentary enquiry into ME/CFS research led by Dr Ian Gibson and have, via the questionnaire and draft review process, contributed to the National Institute of Clinical Excellence (NICE) development of national clinical guidelines for CFS/ME. We co-ordinated SWAME’s stakeholder response to the NICE draft guidelines. Whilst we are not happy with the final NICE guidelines, they would have been considerably worse without the consultation process and the detailed input of many dedicated stakeholder groups.
We have a representative (Jacqui) on the North & East Devon CFS/ME Service steering group and work with this NHS service to help improve patient experiences.
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We campaign locally for awareness of ME during ME Awareness week in May, obtaining local media coverage. In May 2005, with financial support also from ME North Devon and literature provided by Action for ME, we sent copies of the Delay Harms Health document promoting early diagnosis to all North Devon GPs together with blue ribbons for ME. In May 2006 we provided all GP practices with a DVD outlining the latest biomedical research into ME/CFS through a joint mailing with the local NHS service. If you would like to work with us or take advantage of services we provide (all of which funded from our own fundraising efforts during ME Awareness week), please contact us (our contact details are in the top left of each page of this website)
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