CFS/ME support organisations
This page was constructed by two of my patients, Mrs Kathryn Twinn and Mr Craig Robinson. Inclusion of any source of support on this page does not necessarily indicate an endorsement from me, Dr Myhill. These are sources of support that members of the two Facebook support groups (listed below) have found useful.
CFS/ME specific support organisations
This list is far from exhaustive and is intended to give readers of this website a ‘’starting guide’’ as to where to look for information and support on CFS/ME related issues. These issues could, for example, include advocacy, help with Welfare Benefits or general information on possible causes and treatments of CFS/ME. In addition, there is a significant bias toward UK organisations as this is the geographical location of the vast majority of Dr Myhill's CFS patients.
The inclusion of an organisation or other source of information on this page does not constitute an endorsement by or from Dr Myhill.
Two Dr Myhill "support" facebook groups
Link - https://www.facebook.com/groups/108048875899603/
Number of members - approximately 3,430 [October 2017]
Admins of Group
Kathryn Twinn - ACTIVE ADMIN
Craig Robinson - ACTIVE ADMIN
[Jo Chamberlain - SLEEPING ADMIN]
[Nadine Hooper - SLEEPING ADMIN]
History – This group was set up by Jo Chamberlain in April 2010 as a rallying point for gathering support for Sarah against the GMC. It has now morphed into a support group for patients but it is an open group and so posts can be seen by all users of facebook. It is now a forum where patients can discuss issues arising from following Dr Myhill’s protocol and also where the admins post new items of interest as Dr Myhill develops her protocol further.
Link - https://www.facebook.com/groups/435645003161721/
Number of members – approximately 2,960 [October 2017]
Admins of Group
Kathryn Twinn - ACTIVE ADMIN
Craig Robinson - ACTIVE ADMIN
History - This was set up jointly by Craig Robinson and Kathryn Twinn in November 2012 as there was perceived to be a need where people could discuss the protocol and any questions they may have in a closed and more private environment - posts in this group can only be seen by other group members. It serves exactly the same purpose as the above mentioned group but does so in a ‘’closed’’ environment.
Membership of either of these groups is via approval from either Craig Robinson or Kathryn Twinn.
Both of these groups carry a legal disclaimer as follows:
‘There are one or two matters that we are advised to make clear. First, the posts on this group are not intended to constitute medical advice and should not be construed as such by readers. Secondly, none of the posts contained on this group are specifically endorsed by Dr Myhill. Although there may be occasion where Dr Myhill’s views are sought on certain issues and where such views are reported, this once again should not be construed as either constituting medical advice or providing a full discussion of Dr Myhill’s views on the said matter. All users of this facebook group are indeed advised to seek proper medical advice before embarking on any treatment protocol or any course of treatment. In addition, the inclusion of petition, fundraising and other advocacy websites in this group does not imply an endorsement from Dr Myhill. Finally, it is the case that many members of this group, whilst in general following Dr Myhill’s protocols, may have altered certain elements and so posts contained in this group should not be construed as forming a basis of Dr Myhill’s treatment protocols.’’
Courtesy of group member, Steve Hocking, we have a Facebook Group Logo, which reminds us all to stay focused and never give up: (and includes some happy mitochondria!)
Dr Myhill "support" facebook page
Link - https://www.facebook.com/pages/Supporters-of-Dr-Sarah-Myhill/230752230289407
Number of members - approximately 2,030 [October 2017]
Admins of Page
Kathryn Twinn - ACTIVE ADMIN
Craig Robinson - ACTIVE ADMIN
Brief description: This is a page where notices concerning Dr Myhill's website and work are posted. Also, any changes to protocol guidance are posted here too. Membership of this page is via approval from either Craig Robinson or Kathryn Twinn and this page carries the same legal disclaimer as noted above for the two Dr Myhill Facebook groups.
Dr Myhill Twitter Feed
Link - https://twitter.com/MyhillNews
Number of followers - approximately 2,120 [October 2017]
Craig Robinson administers this feed.
Brief description: This is a very useful feed to keep abreast of new developments concerning Dr Myhill's website and work and also to be notified of any changes in protocol guidance.
Dr Myhill Official YouTube Channel
Kathryn Twinn and Craig Robinson administer this Channel.
Brief description: There is a collection of useful YouTubes about Dr Myhill's protocol from various media outlets.
Blue Ribbon for the Awareness of ME
Address: 30, Winner Avenue, Winterton-on Sea, Gt Yarmouth, Norfolk NR29 4BA
Tel : 01493 393717
Brief description: BRAME was launched to create awareness and understanding that ME is a very real and debilitating illness and to highlight the consequences of living with ME.
The Young ME Sufferers Trust [TYMES]
Address: P O Box 4347, Stock, Ingatestone, CM4 9TE
Tel : 0845 003 9002
Brief description: This is a national charity dedicated to supporting young people with ME, their families and professionals.
Invest in ME
Address: P O Box 561, Eastleigh, Hampshire. SO50 0GQ
Tel: 02380 251719 or 07759 349743
Brief description: This is an independent UK Charity campaigning for biomedical research into Myalgic Encephalomyelitis, as described by WHO ICD 10 G93.3
Note – there is a patient led organisation known as ‘’Let’s Do it For ME’ which has the remit of raising funds for Invest in ME’s research studies. Their website is http://ldifme.org/ and this organisation can also be found on facebook by searching for ‘Let’s do it for ME’.
ME Alliance Northern Ireland (MEANI)
This is a new alliance of patient organisations in Northern Ireland and MEANI inquiries should be directed to Mrs McParland at email@example.com
Address: 7 Apollo Office Court,Radclive Road,Gawcott,Bucks,MK18 4DF
Tel: 01280 818964 between 9.30am and 3.00pm
Brief description: The ME Association provides information to its members via a newsletter and does fund research projects. Perhaps, most useful is the very full referencing in Charles Shepherd’s book, ‘’Living with ME’’ sold through the ME Association. Although some readers may find this book a little negative, it is nonetheless a good one stop shop for referencing material. The ME Association also provides useful leaflets on Welfare Benefits.
Action for ME
Address: PO Box 2778, Bristol BS1 9DJ
Tel: 0845 123 280
Brief description: Funds research. This organization has a helpful section to assist CFSs to gain benefits.
Brief description: This is an online organisation which provides advocacy information as well as some detailed papers regarding the ‘’politics’’ of ME and research into ME.
ME Research UK
Address: ME Research UK,The Gateway, North Methven Street,Perth PH1 5PP, UK
Tel: 01738 451234
Brief description: ME Research UK is a medical research charity based in the United Kingdom with the principal aim of commissioning and funding scientific (biomedical) investigation into the causes, consequences and treatment of CFS/ME.
25% ME Group
Address: 21, Church Street, Troon, Ayrshire. KA10 6HT
Tel: 01292 318611
Advocacy helpline: 0141 570 2938
Brief description: This group is a unique and independent support group set up to help people who suffer from severe ME and to break the isolation that it brings to their lives. Their twice yearly magazine contains a wealth of information, support and practical tips. Upon subscribing you receive a full contact list of all other members.
Pesticide Action Network
This is a useful Network for those sufferers who feel that their condition was either caused by or has been worsened by pesticide exposure
Address: The Brighthelm Centre, North Road, Brighton, BN1 1YD
Tel: 01273 964230
Brief description: PAN UK works to replace hazardous chemical pesticides with sustainable and equitable alternatives in agriculture, urban areas, homes and gardens. It seeks change in policy and practices at home and overseas, and support projects bringing real economic, health and environmental benefits to the developing world.
Website : The website has now been archived. For the most recent archived version, please use a search engine with the seach "co-cure archives"
Brief description: This is an online resource where one can sign up to receive email updates concerning new research and advocacy issues as they happen. Co-Cure describes itself as an information exchange forum. Subscription is free.
Brief description: Stonebird is a web resource that seeks to share some of the experience of living with ME. The ‘Stonebird’ represents the idea that you don’t have to do anything to be of beauty and value in the world. The site has information and comment about matters relating to severe ME
Brief description: This is a global organisation designed to break the isolation of the illness and facilitate information exchange. New research and advocacy matters are reported.
Brief description: Originally set up as an online advocacy resource for ME sufferers, oneclick has extended into other advocacy areas but there are still good resources here for ME sufferers.
The Hummingbird’s Foundation for ME
Brief description: The Mission statement is ‘’ The HFME is dedicated to fighting for the recognition of Myalgic Encephalomyelitis based on the available scientific evidence, and for patients worldwide to be treated appropriately and accorded the same basic human rights as those with similar disabling and potentially fatal neurological diseases such as Multiple Sclerosis.’’ There is a wide variety of useful resources concerning illness definition and research studies etc.
The Grace Charity for ME
Address: The Grace Charity for M.E.
- 20 Dickens Close
- ME17 1TB
- 20 Dickens Close
Website - http://www.thegracecharityforme.org
Brief description – The Grace Charity has produced a variety of helpful information and in particular a (perhaps unique) "Hospital booklet" for ME sufferers. The website is extensive and the Grace Charity makes a very positive statement of its aims on the Homepage:
" Please note: we DO NOT promote or encourage GET (Graded Exercise Therapy) or CBT (Cognitive Behavioural Therapy) for M.E. sufferers. Neither do we promote the Lightning Process, Mickel Therapy, or the Reverse Therapy. However, we DO PROMOTE a biomedical perspective of M.E."
Get Well From ME
Website -- http://getwellfrom.me.uk/about-me
Giles Meehan has produced a series of YouTube clips which can be seen at this website. Many sufferers have found this to be a useful resource.
Salus Fatigue Foundation
Salus Fatigue Foundation – At Salus we take a self –management approach, providing support, advice and education for people affected by CFS. All our services are free within our specialised centre based in the West Midlands, providing educational workshops, counselling, pacing groups, relaxation, yoga, Qi gong. We offer a closed Facebook page allowing remote support and for people who live outside the Birmingham area to have access to positive support. The Salus team, through their own personal experiences with recovery from CFS are here to inspire and share their knowledge to help you improve your health and wellbeing.
For further information contact
Website - Salus Fatigue Foundation
Email - Salus Fatigue Foundation email (firstname.lastname@example.org)
Telephone - 0121 3556853.
Facebook group (closed) - Salus Fatigue Foundation Facebook Group
M.E Society of America
The ME Society of America is a research-information website that was run by Maryann Spurgin PhD until her retirement in 2007. In 2013 the website was archived and can no longer be found in a usual internet search. This statement appears on the Home Page of the Society's website:
The M.E. Society of America is an organization that seeks to promote understanding of the disease known as myalgic encephalomyelitis (ME/CFS), a multi-system disease adversely affecting the cellular mitochondria and the heart, brain, neuroendocrine, immune, and circulatory systems. M.E. was first described in the 1950’s following the recognition of many cases around the world, including a number of cases at the Royal Free Hospital in England. Many different viruses, bacteria, or toxins in combination with genetic factors may be involved in the etiology of the disease, which usually begins in childhood or early adulthood with an acute infection. Studying research-based subsets is the key to scientific progress in this area of investigation. In a number of publications, Dr. A. Melvin Ramsay outlined a definitional framework for M.E. that described abnormal muscle metabolism, circulatory impairment, and cerebral involvement.
Website - The M.E. Society of America
Statement from ME Support Home Page:
M.E. Support is one of the leading websites on Myalgic Encephalomyelitis providing information, advice and support. M.E. is little-known and often misunderstood but it is an extensive and debilitating neurological disease. It is also referred to as Myalgic Encephalopathy, Chronic Fatigue Syndrome (CFS), Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) or Post Viral Fatigue Syndrome (PVFS).
Website - ME Support
General support organisations
Advice line: 0808 808 7777 [Weds and Thurs 10am-12pm and 2pm-4pm]
Citizens’ Advice Bureau
Disability Rights UK
Tel: 0300 555 1525 [Mon and Thurs 9am – 1pm]
Brief description: This organisation produces a wide variety of factsheets. The Independent Living Advice Line provides advice on arranging care through Direct Payments including appeals against funding decisions by social services.
ME Welfare Benefits and Advice and Support Group [on Facebook]
Brief Description: This is an excellent group for ME sufferers who are claiming Welfare Benefits. There are superb resources in the Files section of the group and it is very well run by a great team of admins. The group description is as follows: ‘’ This is a group for anyone suffering with ME or CFS who are struggling to obtain the benefits they [are] entitled to. We are not benefit experts but collectively we hope to be able to provide information and support to individual members [going] through the draconian assessments.
All these books are available through Amazon and other good online or high street book stores. With the exception of the first four books(!), the other books are listed in no particular order.
- Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis: It's Mitochondria, Not Hypochondria - Dr Sarah Myhill - please see Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis: It's Mitochondria, Not Hypochondria
- Sustainable Medicine - Whistle-blowing on 21st century medical practice – Dr Sarah Myhill - please see Sustainable Medicine
- Prevent and Cure Diabetes - delicious diets not dangerous drugs - Dr Sarah Myhill and Craig Robinson - please see Prevent and Cure Diabetes - delicious diets not dangerous drugs
- The PK Cookbook - Go Paleo-ketogenic and get the best of both worlds- Dr Sarah Myhill and Craig Robinson - please see The PK Cookbook - Go Paleo-ketogenic and get the best of both worlds
Please Note Dr Myhill's Stone Age Diet is not a "classic paleo" diet. The differences are noted here - Differences between Dr Myhill's Stone Age Diet and a 'standard' Paleo diet. However, paleo recipe books are included here as some Facebook group members found them helpful.
A patient of Dr Myhill's, Sally Phillipe, has produced a great Stone Age recipe book, which can be located here - Stone Age Recipe Book
More often Dr Myhill now prescribes the ketogenic diet - please see Ketogenic diet - the practical details and My book The PK Cookbook - Go Paleo-ketogenic and get the best of both worlds.
Here is a link to a book "Bed Without Boundaries: Therapeutic Activities for Chronically Ill People" by Lois Owen - this brave young woman lost her fight with CFS in 2012 (see Derby Telegraph Article on Lois Owen ). She wrote an incredible book using a creative and interactive approach to help people with chronic illness or disability get the most out of life and maximise their abilities. LINK - Bed Without Boundaries This book will be most helpful for the severely affected CFS sufferer.
- Wild Health: How Animals Keep Themselves Well and What We Can Learn from Them - Cindy Engel
- The Paleo Solution - Robb Wolf
- Adrenal Fatigue, the 21st Century Stress Syndrome - James L Wilson
- The Kalish Method - Dr Daniel Kalish
- the Eli Diet theory: Genetics, hormones, weight, nutrition, disease - Jeanette Elisha-Elliss
- The Sinatra Solution Metabolic Cardiology - Stephen T Sinatra
- Why ME? - Dr. Belinda Dawes and Dr. Damien Downing
- Better Recovery From A Viral Illness - Dr. Darrell Ho Yen
- Climbing out of the Pit of Life - Dr. Darrell Ho Yen
- Recovering from Chronic Fatigue Syndrome - William Collinge
- Guide to Self Healing - Mathew Manning
- M.E -Chronic Fatigue Syndrome: A practical guide – Clare Francis and Dr Anne Macintyre
- Your thyroid and how to keep it healthy - Dr Barry Durrant-Peatfield
- Tired of being Tired – do you have adrenal burnout? Dr Jesse Lyn Hanley and Nancy Deville
- Recovering with T3 - Paul Robinson
- Living well with hypothyroidism - Mary J Shomon
- The Edge Effect - Dr Eric Braverman
- The Power of Now - Eckhart Tolle
- Natural Health and Weightloss - Barry Groves
- Gut and Psychology Syndrome - Dr Natasha Campbell-McBride MD
- The acid alkaline food guide - Dr Susan E Brown & Larry Trivieri Jr
- Nutritional Medicine - Dr Stephen Davies & Dr Alan Stewart
- The fast diet - Dr Michael Mosley & Mimi Spencer
- Detoxify or Die - Sherry Rogers MD
- Cleaning yourself to death- Pat Thomas
- From Fatigued to Fantastic - Jacob Teitelbaum MD
- Why ME? -Alex Howard
- Molecules of Emotion - Candace B Pert
- Recovery from CFS – 50 personal stories - Alexandra Barton
- What your doctor may not tell you about fibromyalgia fatigue - R.Paul St Amand & Claudia Craig Marek
- Joyful Recovery from Chronic Fatigue Syndrome/ME - by Sasha Allenby
- Digestive Wellness – Elizabeth Lipski
- Natural Progesterone - John Lee MD
- It must be my hormones – Marion Gluck
- Betrayal by the brain – Jay Goldstein
- Beat Candida – Erica White
- Beat Fatigue Handbook – Erica White
- The Optimum Nutrition Bible – Patrick Holford
- Life Without Bread - Wolfgang Lutz
- Minding my Mitochondria - Dr Terry Wahls
- Grain Brain - Dr Perlmutter
- Stop the Thyroid Madness - Jamie Bowthorpe
- Myalgic Encephalomyelitis and Post Viral Fatigue States: the saga of Royal Free Disease - Dr Melvin Ramsay
- Chronic fatigue Syndrome - Byron Marshall Hyde MD
- Chronic Fatigue unmasked - Gerald Poesnecker MD
- Not All in the Mind - Richard Mackarness
- Allergies your hidden enemies - Theron Randolph
- Your Symptoms Are Real: What to Do When Your Doctor Says Nothing Is Wrong - Benjamin H. Natelson
- Yoga for Fatigue - Fiona Agomb
- Can God Help M.E? - Liz Babbs
- Love Never Fails - Adrian Ros
- M.E. or Not M.E. - That Is The Question -- David Townsend
- Family good - Pete Evans
- Everyday Paleo Thai - Sarah Fragoso
- Zen belly - Simone Miller
- Paleo by season - Peter Servold
- Paleo Patisserie - Jenni Hulet
- Paleo cooking - Elana Amaterdam
- Cultures and fermented beverages
- Get the glow* - Madaline Shaw
- How to be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers - Toni Bernhard
- The art of eating well* - Hemsley and Hemsley
- Nom mom paleo - Michelle Tam
- The paleo approach - Sarah Ballantyne
- Could it be B12?: An Epidemic of Misdiagnoses - Sally M. Pacholok and Jeffrey J. Stuart
- Here are three books which are perhaps best described as vegetarian paleo diet books, written by the vegetarian Ironman triathlete, Brendan Brazier.
--The Thrive Diet - Brendan Brazier
--Thrive Energy Cookbook - Brendan Brazier
--No Meat Athlete - Brendan Brazier
- Here is an online link to a book that is subject to regular edition changes and so it was felt better to link here:
Local Self Help Groups
This list is far from exhaustive but does represent local groups that members of Dr Myhill’s Facebook support groups have found useful. They are listed in no particular order. Where more information is provided, this does not necessarily mean that this group is more active than other groups listed with fewer details, it merely means that more information was provided to Kathryn and Craig at the time when they compiled the list. It is recommended that, if you are interested, contact be made with the group so that further details can be elucidated. In addition, please note that some of these groups are free, whereas others make a charge.
CONTACT DETAILS - PO Box 1647 Hassocks West Sussex BN6 9GQ
CONTACT DETAILS - http://www.tamesidefibromyalgia.co.uk/
Worcestershire M.E.Support Group
CONTACT DETAILS - Chairman: Ian Logan, 1 The Old School House, Church Lane, Martley, Worcester, WR6 6QA (01886 888419)
- Bromsgrove: Edwina Evans - 01527 832245
- Droitwich: Stephen Woodfield - 01905 798671
- Hagley: Warwick Davis - 01384 892442
- Pershore/Evesham: Phil Moss - 01386 423463
- Malvern & Worcester: Ian Logan - 01886 888419
- Redditch: Jackie Elston - 01527 458840
- Wyre Forest: Audrey Hammond - 01562 822834
There is a newsletter, there are monthly meetings, sometimes with guest speakers.
Tyne and Wear ME/CFS Support group
(previously Sunderland and South Tyneside ME/CFS support group)
CONTACT DETAILS - Tel 0191 4556959
This organisation provides free membership, monthly meetings, quarterly newsletter and monthly updates, dedicated telephone information line.
Solihull & South Birmingham ME Support Group (SSBMESG)
CONTACT DETAILS - There is no official address, but anyone interested in joining should contact Jenny. Telephone: 0121 689 0777, Text: 07817 561 216, or email: email@example.com
- MEETINGS: The group has 10 meetings a year. The timetable of these are on the website. They take place either in the evening in Shirley or in the afternoon in Stirchley. Sometimes the meetings are just general social meet ups, sometimes they have relevant speakers at the meetings. People with ME, CFS and FMS, their carers and their families are welcome. You do not have to be a member to attend the meetings.
- NEWSLETTERS: The group has its own newsletter which is full of the latest research and info into the illness, alongside lighter stuff like jokes. Jenny mainly does the newsletter but any member of the group can submit something to Jenny to be included. You have to be a member to get the newsletter, but membership is cheap.
- GROUP LIBRARY: A variety of audio books, paper books, CDs and DVDs are available for the group to rent out for free. Most are related to the illness, some are more general.
- INFORMATION SERVICE: There are a certain amount of information leaflets on and packs available for anyone who wants to look at them
- CONTACT LIST SERVICE: Optional Contact List service which enables members to get in touch with each other for friendship and support. You do not have to be on this list if you do not wish to be on it.
- FACEBOOK PAGE: A closed group where members post socially and to provide support and info. You can only join the group if you are a member, or if you contact Jenny and request to join.
Sheffield ME Group
CONTACT DETAILS - The Circle, Rockingham Lane, Sheffield S1 4FW -- Tuesday to Thursday 10:00 till 16:00 - They have lots of information and help for anyone who needs it.
- Telephone: 0114 2536700
- Telephone: 0114 2536700
Brief description - The Group seeks to raise the general awareness of ME/CFS and to educate the general public through the promotion and dissemination of knowledge about the illness. Sheffield M.E. Group runs a variety of services, such as an information service, regular and special meetings, a library and newsletter, a listening ear, and social meetings.
Dorset ME Support
CONTACT DETAILS - http://www.dorsetmesupport.org.uk/
Hampshire Friends with M.E.
CONTACT DETAILS - The Community Centre, Brinton Lane, Hythe, Southampton, SO45 4DU
Tel: 0845 834 0325
Activities: Regular newsletters by post or email, containing medical and research info, practical tips, group activities and news, members poetry pages, fun pages and more! Members contact list. Telephone support line. Local branches across the county, organising regular meet-ups, events, outings (usually with subsidised electric scooters), meditation sessions and pub meals. Lively, fun and supportive members Facebook group. Home visit service for the severely affected (currently in transition). Well stocked library with wide variety of books, CDs and DVDs. Group ethos: emphasis on social and emotional support, friendship and fun - as far as the illness allows. Aspiration to expand support for the housebound and severely affected.
Fibromyalgia South East Support (FMSSES)
For information on local groups in the South East area please contact the groups' coordinator Teresa White on email address: firstname.lastname@example.org or phone: 01243 670783
Fibromyalgia conference - A Fibromyalgia conference is run each year by FollyPogs Research charity, which is linked to Fibromyalgia South East Support(FMSSES). The contact for this is Jeanne Hambleton, whom you can contact on email: email@example.com or phone: 08433 828 829
- There is also a National Fibromyalgia charity called FMA UK (Fibromyalgia Association). Their website is http://fmauk.org/
The head office phone number is 0844 826 9033 and it is open from 10am to 2pm. There is also a helpline on 0844 887 2444.]
ME Association Sussex
CONTACT DETAILS - http://www.meassociation.org.uk/2009/09/sussex/
ME group Brighton Sussex
CONTACT DETAILS - http://www.measussex.org.uk/
Yoga for ME (and Fibromyalgia) in Brighton and Hove Sussex
CONTACT DETAILS - 07939 830096
Mondays at 2.30 3.45
Very gentle and supported yoga classes for those with ME or Fibromyalgia. It is led by a qualified yoga teacher who understands ME and Fibromyalgia and its limitations. There is an opportunity for a cup of tea and a chat afterwards.
ME North East
CONTACT DETAILS - http://www.menortheast.org/
Large website – worth a look.
Sheffield Yoga For ME
CONTACT DETAILS - http://www.sheffieldyogaforme.org.uk/
CONTACT DETAILS - ME North Derbyshire, 46 Edinburgh Road, Chesterfield, Derbyshire, S41 7HE
CONTACT DETAILS - ME Doncaster, 10 Thellusson Ave, Scawsby, Doncaster DN5 8QN, Tel: 01302 787353
ME North Notts
CONTACT DETAILS - 3 Roderick Avenue, Kirkby in Ashfield, Notts
CONTACT DETAILS - 36 Scraptoft Lane, Leicester, LE5 1HU
Shropshire ME Group Support
CONTACT DETAILS - http://www.shropshiremegroup.org.uk
South East London ME Support Group
CONTACT DETAILS - http://www.selmesg.org/
Isle of Wight Fibromyalgia Support Group
CONTACT DETAILS - Group Leader Karen Smith
Contact by email : Isle of Wight Fibromylagia Support Group or tel:
0844 887 2346
Facebook : Fibromates- Isle of Wight Fibromyalgia Support Group
Brief Description: Meet on the 2nd Tues of the Month @ All Saints Church Ryde Corner of Queens Road and West Street, in the hall at the back. From 1.30-4pm Free designated parking is available Between meetings the group organises social get togethers, and a newsletter is sent by email at the end of each month. Members will receive an FMS/CFS information pack ( for as long as funds allow!) Newcomers are greeted by a 'Fibro Buddy'. Subs of £3 is charged per meeting which includes refreshments Membership is £6 per annum payable on 2nd meeting The group has a range of speakers, and has a close relationship with the pain clinic, and Dr Gary Lee who is currently heading a research programme with Southampton University, and many of the group members are participants, the current phase involves 'active' MRI scans of the brain. The group has developed close links with other community groups and health care professionals, such as The Health Trainer Service, Community Action IW, The Isle of Wight Anxiety and Panic Attack Support Group IW, and The Independent Living Centre etc. The group is a registered FMAUK local group.
FM/ME/CFS & Carer's Support Group West Wales
CONTACT DETAILS -FM/ME/CFS & Carer's Support Group West Wales
CFS/ME Support Group Surrey
A new free support group for people with ME/CFS who live in Surrey. This is a place to share ideas and tips on coping with living with the condition whilst getting better. A general support group for an often isolating condition.
Facebook Group web address - CFS/ME Support Group Surrey
Admin of this Facebook Group is Emma Joy.
The York ME Community
CONTACT DETAILS - York ME Community website
Email - Bill Clayton (bill@York-ME-Community.org)
Bill's introduction to the website - "My name is Bill Clayton and I live in Fulford, York. I am aware of many national web sites and forums dealing with ME, but I feel there is a need for something more local, allowing us to get a true feel for what support there is in the area, and fostering a greater togetherness in our efforts to improve that support for the people of York. This site will only be as good as the support given by those that visit it, adding their ideas and experiences, so please spread the word that we are here to help each other and raise awareness of ME in York. I would like to give a huge thanks to my brother Ian who has put this site together for me, with me adding the content, but now it’s pretty much over to you to bring it to life."
Lincoln ME Friendship Facebook Group
As well as being a means for local people to support each other online, we have regular meetings for coffee and chat (at the moment roughly once a month). This is all arranged via the Facebook Group.
Facebook Group web address - Lincoln ME Friendship Facebook Group
Website : OMEGA
Email: Enquiries (firstname.lastname@example.org)
South Oxon Support Group
Tessa Keys - Email: Tessa Keys (email@example.com)
Wantage and Grove Support Group
Annie Kingsbury - Tel: 01235 763813 - Email: Annie Kingsbury (firstname.lastname@example.org)
Website Queries / Problems
Email: Webmaster (email@example.com)
Brief Description: OMEGA is the Oxfordshire Myalgic Encephalomyelitis Group for Action. We are a self-help group for people with ME or Chronic Fatigue Syndrome, and their carers. Members can benefit from contact with other people who recognise and understand the illness. Members give each other friendship and support, exchange information about treatments, and learn from each other about the management of this long-term illness.
Leeds ME Network
Website : Leeds ME Network
Brief Description : Patient self-help group sharing information of interest to people with ME/CFS in the Leeds area. There are monthly meetings.
How to find a local support group if it is not listed here
Should these listed groups not cover your geographical region, both Action For ME and The ME Association have search engines. You merely input your postcode and a listing of nearby support groups, not necessarily associated with either of these charities, is located for you on a map, where contact details and further information can be accessed. These can be found at:
Sarah Myhill Limited :: Registered in England and Wales :: Registration No. 4545198
Registered Office: Upper Weston, Llangunllo, Knighton, Powys, Wales LD7 1SL, UK. Tel 01547 550331 | Fax 01547 550339