CFS/ME support organisations

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Contents

[UPDATED MARCH 2023]

My Online Community

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Introduction

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.

Blue Ribbon for the Awareness of ME

Address: 30, Winner Avenue, Winterton-on Sea, Gt Yarmouth, Norfolk NR29 4BA
Tel : 01493 393717
Website: http://www.brame.org

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
Website: http://www.tymestrust.org/

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
Website: http://www.investinme.org

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 joanmcparland@live.co.uk

ME Association

Address: 7 Apollo Office Court,Radclive Road,Gawcott,Bucks,MK18 4DF
Tel: 01280 818964 between 9.30am and 3.00pm
Website: http://www.meassociation.org.uk/

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
Website: http://www.actionforme.org.uk/

Brief description: Funds research. This organization has a helpful section to assist CFSs to gain benefits.

MEActionUK

Website: http://www.meactionuk.org.uk/

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
Website: http://www.meresearch.org.uk/

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
Website: http://www.25megroup.org

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
Website: http://www.pan-uk.org/

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.

Co-Cure

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.

Stonebird

Website: http://www.stonebird.co.uk

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

ME-CFS.Community.com

Website: http://cfsknowledgecenter.ning.com/

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.

Oneclick

Website: http://www.theoneclickgroup.co.uk/

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

Website: http://www.hfme.org/

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
Langley
Maidstone
Kent
ME17 1TB

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 (info@salus.org.uk)
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

ME Support

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

M.E Support Northern Ireland

Statement from M.E Support Northern Ireland:
We have a social worker on our committee who is happy to help you with a range of issues, e.g. PIP (DLA), ESA, direct payments, care plans, rest bites for carers etc. Don’t hesitate to contact us if you need help with any of this, all services come at no additional charge to you.

In addition to our monthly support group meetings every month we also have smaller groups for people depending on their situation, e.g. for young people, carers etc.

We also provide services such as personal visits to those who are more isolated due to their illness0 we also run conferences and lobby in Stormont for the improvement of health services and we provide advice on all issues connected to M.E.

Lastly, we have 9 committee members who run M.E Support Northern Ireland, all of whom are unpaid and volunteer their time, so while we will always try and respond quickly to our members this may not always be possible due to illness or other commitments. If you would like to become a member of M.E Support Northern Ireland to avail of our services, please contact me for more information.

Address:
Conway Mill 5-7 Conway Street Belfast BT13 2DE

Facebook Group:
ME Support Northern Ireland Facebook Group

Website:
Under construction

Contact Number:
07526252055

Food for the Brain and Home Instead Websites - dementia prevention and treatment resources

Food for the Brain website

Please see Food for the Brain website where you can find valuable information on preventing and treating dementia. One can also order test kits from this site for homocysteine levels and other potential markers for cognitive decline.

Home Instead Website

Please see Home Instead Early warning signs of dementia to look for in the elderly

This resource features an extensive discussion covering:

  • What dementia is and what its common forms are
  • The importance of early diagnosis
  • Early warning signs and what to do if you suspect dementia
  • Creating a long-term care plan with your doctor and your loved ones

Furthermore the guide discusses that:

  • Alzheimer's disease is just one form, but dementia covers a wide range of diagnoses affecting cognition and memory.
  • Early signs include memory loss, difficulty with language, confusion and disorientation, difficulty with numbers and time, and mood swings.
  • Although more common in elderly people, dementia can occur in people from around the age of 30 onwards.
  • Created with the elderly, their loved ones, and caregivers in mind, this guide aims to drive better understanding to help people successfully navigate life with dementia.

Naomi Whittingham's Website

A Life Hidden

A Life Hidden Website

A Life Hidden is a website created by patient advocate Naomi Whittingham. The site contains many articles on living with ME, with particular emphasis on the severely affected.

Naomi writes: “A Life Hidden is dedicated to those shut away from the world because of the intense suffering of ME (myalgic encephalomyelitis). I hope that the site will serve as a resource for anyone wishing to understand more about the illness.”

Independent Living Website

Please see Independent Living

They describe themselves thus:

Independent Living has been online continuously for more than 21 years now. We have been providing impartial information about living independently with a disability since the last millennium. We set up the site in the first place simply because there was nowhere to find out about products and services that could make daily living and mobility easier.

General support organisations

Carers UK

Advice line: 0808 808 7777 [Weds and Thurs 10am-12pm and 2pm-4pm]
Website: http://www.carersuk.org

Citizens’ Advice Bureau

Website: http://www.adviceguide.org.uk

Disability Rights UK

Tel: 0300 555 1525 [Mon and Thurs 9am – 1pm]
Website: http://www.disabilityrightsuk.org

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]

Website: https://www.facebook.com/groups/278260135547189/

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.


Recommended Reading

All these books are available through Amazon and other good online or high street book stores.

With the exception of the first SEVEN books(!), the other books are listed in no particular order.


  • 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:

http://www.cfstreatmentguide.com/chronic-fatigue-syndrome-a-treatment-guide-2nd-edition.html

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.

reMEmber

CONTACT DETAILS - PO Box 1647 Hassocks West Sussex BN6 9GQ
http://www.remembercfs.org.uk/index.htm
e-mail: me_cfs@hotmail.com

tamesidefibromyalgia

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)
Area Contacts:

  • 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

http://worcsmegroup.weebly.com/

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
http://www.mecfs.co.uk
email: me-cfs@blueyonder.co.uk

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: jennylg@live.co.uk
http://ssb4mesupport.weebly.com/

Groups activities:

  • 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
http://www.sheffieldmegroup.co.uk

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
Website: http://www.friendswithme.org.uk

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: tjswhite1954@live.co.uk 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: jeanne@follypogsfibro.org 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
http://www.cornerstone-hove.org.uk/

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/

MEND

CONTACT DETAILS - ME North Derbyshire, 46 Edinburgh Road, Chesterfield, Derbyshire, S41 7HE

MEDALS

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

ME Leicester

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

OMEGA - Oxfordshire Support Group for ME/Chronic Fatigue Syndrome and related conditions

Website : OMEGA
Contact:
Email: Enquiries (enquire.omega@gmail.com)
South Oxon Support Group
Tessa Keys - Email: Tessa Keys (tessamary_keys@yahoo.co.uk)
Wantage and Grove Support Group
Annie Kingsbury - Tel: 01235 763813 - Email: Annie Kingsbury (anniekingsbury@talktalk.net)
Website Queries / Problems
Email: Webmaster (omega.webmaster0@gmail.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.

rehab4addiction - Derbyshire and near Derbyshire

Sometimes, CFS and ME sufferers find themselves in a position of addiction, often due to inappropriate prescribing by GP's. rehab4addiction provides useful support in such cases.

Website : rehab4addiction - Derbyshire and near Derbyshire

Rehab 4 Addiction offers a wealth of resources and information about addiction and mental health. Also, it provides a helpline that offers immediate assistance to those struggling with addiction in Derbyshire. Lastly, it offers a comprehensive directory of treatment centres throughout the UK, making it easier for those in need to find help near them.

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:

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