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Ref:
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Description of Websites:
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Access Link:
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L1-001
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The 25% M.E. Group
This registered charity is an isolation-busting group dedicated to the needs of the severe ME/CFS sufferer and their carers. I have been a member of this group myself almost from its very beginning many years ago and, if you are severely affected by ME/CFS/PVFS, I can highly recommend it.
Its patron is the Countess of Mar, its medical advisor is Dr Betty Dowsett MB.ChB.Dip.Bact, its scientific advisor is Dr Vance Spence PhD, and its coordinator is Simon Lawrence who, despite being severely affected by M.E. himself, has slowly managed, with the help of a small but dedicated team and a supporting and ever expanding membership, to transform this growing support group from very humble beginnings to the widely respected, lottery funded, national charity it is today.
Note: This website is also a Satori-5 reciprocial-link host. See "Credit No-21"
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www.25megroup.org
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L1-002
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Overton Studios Trust
A Christian charity providing worldwide holistic online and offline support for sufferers from: ME, CFS, CFIDS, Post Viral Syndrome, and Fibromyalgia. Live-Blood Microscopy Testing is also available via this excellent site.
Note: This website is also a Satori-5 reciprocial-link host. See "Credit No-11"
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www.ostrust.co.uk
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L1-003
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Axford's Abode
Here's a quote from their homepage: "Need the latest relevant ME/CFS informations?". What you get is an award winning ME/CFS resource website with a wealth of information. Well worth a visit.
Note: This website is also a Satori-5 reciprocial-link host. See "Credit No-02"
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http://freespace.virgin.net/
david.axford/me/me.htm
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L1-004
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ME Action UK
"We are a discussion forum or "chat room" open for anyone who has personal or profesional intrests in the many issues surrounding the multisystem imparing neurological disease known as Myalgic Encephalomyelitis (M.E.)."
"Myalgic Encephalomyelitis is recognised as a neurological disease by the World Health Organisation. We exist to discuss and raise awareness of all the issues relating to M.E. and in turn we give support for those what are severely ill and disabled by M.E."
Note: This website is also a Satori-5 reciprocial-link host. See "Credit No-09"
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www.meactionuk.org.uk
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L1-005
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BRAME
BRAME = Blue Ribbon for the Awareness of Myalgic Encephalomyelitis. "To create awareness and understanding that M.E. is a very real, and for some, a very debilitating illness."
"To publicise and create awareness of the severity and widespread nature of the illness."
"To publicise and created awareness of the consequences of living with M.E. for the sufferer, carer, and the whole familly unit and to highlight their needs."
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http://diaspace.dial.pipex.com/
town/way/glc04//brame
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L1-006
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CFS Research Foundation
"Supporting high quality research aimed at understanding CFS/ME and its treatment. it is estimated that there are some 240.000 people in the United Kingdom suffering from Chronic Fatique Syndrome, the illness which is usually known as ME (myalgic encephalomyelitis)."
"The CFS Research Foundation was officially launched in 1993 to bring together the best minds to meet the challenge presented by chronic fatigue syndrome, encouraging basic research into the body mechanisms that lead to and continue the illness."
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www.cfsresearchfoundation.org.uk
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L1-007
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ME/CFS Parents
"A community for parents, parents-to-be and people considering parenthood who suffer from ME/CFS."
"Deciding about having a child, going through pregnancy and parenting are all hard things even
when you don't suffer from ME/CFS. This site aims to offer extra support to those going through
these life stages."
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www.mecfsparents.org.uk
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L1-008
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ME/CFS Recovery
"This website is intended to help those suffering from ME/CFS to help themselves recover from the illness, which IS POSSIBLE."
"The Authors would not presume to claim that the programme referred to represents a universal cure, but we do know that it has worked for our son (who thankfully has made a full recovery) and for many many others. A study (by Dr David Smith and others), of treatment of children under the age of 18 based on these principles, has been accepted for publication in the Archive of Diseases of Childhood and this gives evidence of an 80.6% success rate. It is acknowledged however that there are some who cannot tolerate the medication or the discipline of the regime that is required. Inevitably, there will be others for whom, for whatever reason, it does not work. We simply want to share these notes with those of you who would agree with us that it is a soundly based programme which is definitely WORTH A TRY."
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www.me-cfs-recovery.co.uk
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L1-009
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The National M.E. Centre
"Esther Rantzen has long been a campaigner and advocate for the "underdog". Even from her early days in radio to her rise in the world of television, she has never been afraid to question authority."
"Esther currently is very involved in the ME world as the President of the Association of Youth with ME and more recently, we were honored that she agreed to become Vice President of the National ME Centre."
Note: This website is also a Satori-5 reciprocial-link host. See "Credit No-20"
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www.nmec.org.uk
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L1-010
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MERGE
MERGE = Myalgic Encephalomyelitis Research Group. "MERGE is the Myalgic Encephalomyelitis Research Group for Education and Support. The charity's principal aim is to commission and fund scientific investigation into the causes, consequences, and treatment of myalgic encephalomyelitis (ME) and related conditions. On this site you will find research news, educational literature, and information on accessing social care services and support."
"Right Click" - then - "Save-As" to download:
PDF document "What is Merge?"
PDF document "MERGE Support Poster"
Note: This website is also a Satori-5 reciprocial-link host. See "Credit No-30"
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www.meresearch.org.uk
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L1-011
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CHROME
"CHROME (Case History Research on Myalgic Encephalomyelitis) is a registered charity set up in 1994 to identify as many severely disabled ME sufferers as possible in the UK and to monitor the course of their illness over a period of ten years. The statistical data from this study will be analysed and used to supplement medical research in important ways."
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http://ds.dial.pipex.com
/comcare/chrome
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L1-012
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The Nightingale Research Foundation
"The Nightingale Research Foundation is a charitable foundation located in Ottawa, Canada. The Foundation was incorporated in 1988 to conduct and assist research into the cause and cure of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (M.E./CFS) and to serve as an educational institution for the Canadian public, physicians, nurses, teachers and their professional societies."
"Our Foundation is named after Florence Nightingale, who fell ill with an infectious disease during her service in the Crimean War. She then developed a disease process that was indistinguishable from M.E./CFS. Despite her severe disability, and the fact that she was a virtual shut-in for the rest of her life, she went on to reform both public health and health care, helping to bring medicine and particularly the care and treatment of the ill patient into the twentieth century."
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www.nightingale.ca
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L1-013
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Support ME
"An Online Resource for Sufferers of M.E. (Myalgic Encephalomyelitis),CFS (Chronic Fatigue Syndrome); CFIDS (Chronic Fatigue Immune Dysfunction Syndrome); PVFS (Post Viral Fatigue Syndrome); and Fibromyalgia (FM)."
"SupportME was established by a recovered ME/CFS sufferer as an online resource for sufferers of ME, Chronic Fatigue Syndrome and CFIDS. The site aims to provide information on the latest research updates from around the world; a library of articles on the condition; message boards for exchanging helpful information and chat; support group information; as well as make products that may be of interest, such as nutritional supplements and health books, more affordable and accessible."
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www.supportme.co.uk
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L1-014
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Network ME
"Network ME is here to: Raise awareness about ME. Support sufferers and carers."
"Network ME began as a local group in North London in 1989. Now a registered charity, employing 2 part-time staff (an Administration Co-ordinator and Outreach Worker, herself an ex-sufferer) Network ME provides telephone support, information and advice which helps to alleviate suffering and feelings of isolation, and helps sufferers obtain recognition and serious treatment."
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www.networkme.org.uk
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L1-015
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CFIDS Association of America
"About CFIDS: Learn more about this modern medical mystery affecting close to one million people.".
"About Us: Our mission is to conquer CFIDS. Learn about the programs and people dedicated to this important effort.".
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www.cfids.org
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L1-016
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Brainfog
"Keeping the lighter side of ME/CFS & life ...well and truly ALIVE !!".
"BRAINFOG!! flies in the face of all preconceived notions that the illness ME/CFS is a creation of psychological disorders. Although we often have our bad days they shouldn't necessarily be mistaken for depression.".
"The forum & chatrooms are full to the brim of support, cyber shoulders to cry on, laughs, new friends, gatherings, pringles and ooooodles more !!!".
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www.brainfog.org
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L1-017
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Westcare
"In 2002 Westcare UK merged with the national charity Action for M.E. The new joint charity provides services, information and support for people affected by M.E. and campaigns to improve the lives of people with the illness.".
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Westcare
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L1-018
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Action for M.E.
"Improving the lives of people with M.E."
"M.E. is also known as Chronic Fatigue Syndrome (CFS). It may also be diagnosed as Post Viral Fatigue Syndrome (PVFS)."
Recommendation:
See the warning about this ME Charity at the "ME Action Uk" website;
A link to it is provided above in ref L1-004.
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www.afme.org.uk
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L-019
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Lyme Disease/CFS/FM/MCS/GWS Information
"I wish to personally welcome you to this web site. It has been created, with love, for you. When we first get diagnosed (or wonder if we should be diagnosed), I know too well how difficult it is to find information about Chronic Fatigue Syndrome (aka CFIDS, M.E.), Lyme, and/or Fibromyalgia Syndrome. There are a myriad of sites that bring you the basics, and I try to present you those basics as well as information slightly beyond. At the moment, there is no cause nor cure. There are no magic bullets. This disease is so complex, no one drug will work. This is not a disease of just your muscles, your immune system, your sleep dysfunction, your hormones, your nutritional deficiencies, your NMH, or your gut; it is a cluster of symptoms that involve every system of your body. Treating it, therefore, involves testing and treating those deficiencies. The controversies surrounding that and the differences in our health contribute to our stress. My new job is to help us sort that all out. Hugs, Marilyn K".
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http://web.tampabay.rr.com/lymecfs
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L-020
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On Eagles Wings
"A Christian Perspective on M.E. - by Hazel Stapleton."
"So you have got M.E. Or you know someone who has it. You are not alone--even though you may feel it! M.E. now affects at least 170,000 people in this country, probably many more, and cases of M.E. now well out-number those of M.S."
"On any website it would be impossible to cover all the information that is currently available on M.E., but I hope to look briefly at:"
1. What Is M.E.?
2. What Can I Do About M.E.?
3. What Other Help Is Available?
4. Why Does God Allow Us To Suffer?
5. On Eagles Wings
6. Further Reading
"The information found in this website is also available in a book "On Eagles Wings--A Christian Perspective on M.E." published by Quinta Press."
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www.oneagleswings.me.uk
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L-021
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The Young ME Sufferers Trust
"Tymes Trust is the longest established national UK service for children and young people with ME and their families. It is a respected national charity whose entire professional team give their time free of charge. They work constantly with doctors, teachers and other specialists, and played a major role in producing the children’s section of the Dept of Health Report on CFS/ME (2002)."
Lord Clement-Jones CBE, Liberal-Democrat House of Lords Spokesman on Health:
Tymes Trust Patron
"In 1989, two young people with ME published the first Tymes Magazine to give children with ME a voice. For the first time, there was a place for them to share experiences and needs. Tymes Trust became fully registered in June 2000 and now offers a full range of services. We also regularly supply expert information and are consulted by doctors and education specialists as well as families and the press."
"The Trust works with NHS Direct, ChildLine, the National Association of Educational Inspectors, Advisers and Consultants, the Nisai/Iris Partnership (education), the Satellite School, the National Association for the Education of Sick Children, and has Partner ME Groups around the UK."
"In 1989, two young people with ME published the first Tymes Magazine to give children with ME a voice. For the first time, there was a place for them to share experiences and needs. Tymes Trust became fully registered in June 2000 and now offers a full range of services. We also regularly supply expert information and are consulted by doctors and education specialists as well as families and the press."
"The Trust is also a member of the ME Alliance of charities and the Chief Medical Officer’s Working Group on CFS/ME. We liaise with the Departments of Health and Education and supplied specialised information to Lord Clement-Jones for his speech during the Lords debate on the Special Educational Needs Bill in December 2000."
"Tymes Trust Executive Director Jane Colby is a former head teacher, member of the National Association of Educational Inspectors, Advisers and Consultants, the National Association of Head Teachers, the Society of Authors, and the UK government Chief Medical Officer’s Working Group on CFS/ME. Jane is a medical educator and professional author who writes for children as well as for adults, edits Tymes Magazine and the ME Library of specialist articles at www.youngactiononline.com. She co-authored the largest ever epidemiological study of ME."
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www.tymestrust.org
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L-022
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Young Action Online
"Empowering Young People With ME: In partnership with the Tymes Trust"
"The Forgotten Children - A Dossier Of Shame"
"Tymes Trust presented this document to the Prime Minister on the 12th of May. It details shocking statistics the Trust has recently collated from information supplied by families of children with ME. To make a donation to support our War on Fear please call 01245 401080 or send a cheque (payable to Tymes Trust) to Tymes Trust, PO Box 4347, Stock, Ingatestone, CM4 9TE. Presentation copies available for £5.50 + £0.50 P&P."
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www.youngactiononline.com
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L-023
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CFS Corner
"This web site is designed for research and information for people with CFS, caregivers, and
medical personnel who deal with Chronic Fatigue Syndrome/Chronic Fatigue and Immune
Dysfunction Syndrome. People with CFS trying to help people with CFS!"
"Our objective is to create categories based upon how people feel they contracted CFS along with
treatments which have or have not worked for them. We also want medical personnel who deal
with CFS to give us all the help they can. One respondent said it was an excellent idea to find
out what we have in common and finally try to help ourselves. (KEEP AN EYE ON FLASH
BULLETINS)."
"The information used in this site is based upon 15 years plus that my wife and I have suffered
from this illness along the results of our research. Please browse the site (particularly the
CAUSES and MANAGEMENT sections) for information, then help us by completing the
QUESTIONNAIRE or CONTACT US with your information. We will update information as
often and as quickly as we can."
Please support the work at CFS Corner by completing their Questionnaire.
Thank You. Satori-5 webmaster.
Note: This website is also a Satori-5 reciprocial-link host. See "Credit No-22"
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www.cfscorner.net
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L-024
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Suffolk Youth and Parent Support Group
"For young people with long-term illnesses and their parents."
"The Suffolk Youth and Parent Support Group for pupils with long-term illnesses was set up with the support of Suffolk LEA's Parent Partnership Initiative and is based in Ipswich."
"There are monthly meetings for both young people up to the age of 25 and their parents. All the young people concerned have reduced school/college attendance or reduced capacity to work, through ill-health (in particular M.E./Chronic Fatigue Syndrome)."
"The role of the group includes: reducing isolation of young people and parents, sharing problems/strengths, accessing and sharing information, linking to national self-help organisations (e.g. Association of Young People with M.E., AYME and the Tymes Trust)."
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www.suffolkmeandyou.org.uk
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L-025
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Fighting ME
With an important emphasis on young ME sufferers.
"My name is Hannah Butterworth. I live in England. I am 24. I have M.E. and have lived with this illness on and off for the past 13 years. I have experienced this illness as a child, as a teenager and now as an adult"
"About four years ago I was admitted to the specialist unit at Oldchurch Hospital, Romford under the care of Professor Findley. There I met five other people with the same condition but with different degrees of severity. This experience I truly believe has been life changing."
"I'm starting up these pages because I believe that the other web sites don't offer the chance for the younger generations to share their experiences with their peers. It is my hope that people when they e-mail in will feel free to express their true feelings about whatever they feel is important to them you can do this at Talk to me."
Note: This website is also a Satori-5 reciprocial-link host. See "Credit No-25"
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www.geocities.com/
hannah_butterworth/
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L-026
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CFIDS Report
"In the U.S., CFS, or Chronic Fatigue Syndrome, was born from the political momentum that sprouted from two cluster outbreaks of a flu-like illness in Incline Village, NV and Lyndonville, NY in the late 1980s. Flu-like symptoms and extreme activity/exercise intolerance were the most common symptoms of those who fell ill. Symptoms such as neurological dysfunction, and orthostatic intolerance were also present, yet varied in their severity or expression, in most patients. These symptoms comprise a clear, reliable definition of the illness that gave birth to the CFS community."
"Chronic Fatigue Syndrome (CFS) is a controversial illness, to say the least. There are many different opinions as to what CFS is and what CFS isn’t. Not wishing to buck this trend, we at the CFIDS Report have our own opinion. Our definition of CFS can be summed up with two key points"
"First, CFS is a distinct illness with very unique symptoms."
"Second, the 1994 CDC revised case definition for CFS is unsound and far too complex. The case definition catches many emerging fatiguing illnesses under an expansive “fatigue syndrome” label. While this politically based definition provides a broad, temporary home to differing emerging fatiguing illnesses, it has been very ineffective in producing consistent research."
Please support the work at CFIDS Report by completing their Questionnaire.
Thank you. Satori-5 webmaster.
Note: This website is also a Satori-5 reciprocial-link host. See "Credit No-26"
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www.cfidsreport.com
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L-027
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The ME Society of America
"The M.E. Society of America is an organization that seeks to promote understanding of the disease known as myalgic encephalomyelitis (M.E.), a multi-system disease adversely affecting 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 may be involved in the etiology of the disease in combination with genetic factors. 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 that described abnormal muscle metabolism, circulatory impairment, and cerebral involvement. There is, however, a more current, research-updated criteria compiled by the Canadian Consensus Panel for ME/CFS, which includes neuroendocrine, immune, and cardiocirculatory symptoms as well as abnormal muscle metabolism, circulatory impairment, and cerebral/neurological involvement, available on this Web site. The ICD9 code for M.E. is 323.9."
"Unfortunately, in 1988, what was historically known both as myalgic encephalomyelitis and as the well-documented epidemic neuromyasthenia was renamed “Chronic Fatigue Syndrome” by employees at the Centers for Disease Control (CDC), who imposed the misleading “fatigue” term onto patients and researchers. In 1994, more damage was done when the CDC broadened the definition for CFS to include many diverse, unrelated diseases, for which “CFS” became an umbrella term. Currently, a government-appointed name-change workgroup has proposed a new umbrella term, Neuroendocrineimmune Dysfunction Syndrome (NDS), under which Ramsay, Canadian, and other selection criteria subsets would be placed."
"The M.E. Society of America will publicize research and case definitions on the disease regardless of the name under which they were published. We do not play the role of a support group. We are a research-information and advocacy group only. The name of our publication is the American M.E. Review. (Information on obtaining updates from the M.E. Society as well as the American M.E. Review is available here.)"
Maryann Spurgin, Ph.D.
Note: This website is also a Satori-5 reciprocial-link host. See
"Pending"
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www.cfids-cab.org/MESA
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L-028
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Foggy Friends
"A Warm Welcome To All Foggy Friends"
"Welcome to Foggy Friends!! The aim of this site is to provide a fun safe place for people to seek help, support and advice, free from harassment. A place to share smiles, tears, views and treatments that have helped them live with this illness. Our friendly forum and chat room are open 24 hours a day for registered users to post messages and chat. If you feel up to it you can have more fun with our games zone and play our great games. (Great for those times of insomnia) We aim to provide something for everyone at Foggyfriends.org"
"Caring for those afflicted with ME can sometimes be hard for both the sufferer and the carer, as the physical and emotional tolls it takes are inflicted. Similarly, when you sometimes see the results and benefits of caring, it can be a wonderful experience. Here you can talk about these issues, good and bad, with like-minded souls, and support each other."
"Are you a ME/CFS sufferer or carer? Foggy Friends offer friendship, support and fun through our friendly website, forum and chat room. Carers and supporters are also encouraged to join our community - everyone who is affected by ME/CFS is welcome."
Daniel and Tigger
Note: This website is also a Satori-5 reciprocial-link host. See "Credit No-31"
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http://foggyfriends.org
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L-029
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Positive with M.E.
"Having been diagnosed with ME in March 2004, I am trying to maintain a positive attitude towards ME."
"I am one of the "lucky ones". Although unable to work as a nursing assistant, I am able to work a couple of hours a day on the computer on most days. I therefore decided to use that time to build this site."
"This site aims not only to provide information about M.E./CFS and the latest research, but also a place to share experiences, provide others with advise and find some distraction."
"This websites motto is: I may have M.E., but M.E. will never have ME."
"Since many of us suffer from eyesight problems, I have tried to build this site in colours and sizes that should be easy on the eyes. I hope you find this site useful, informative and hopefully a bit uplifting."
Note: This website is also a Satori-5 reciprocial-link host. See "Credit No-32"
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http://positivewithme.verwerk.nl
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L-030
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Sheffield Yoga for ME/CFS
"Sheffield Yoga for ME/CFS runs specialised yoga classes for people with ME and Chronic Fatigue Syndrome in Sheffield."
"Very gentle yoga classes for people with Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Post Viral Fatigue (over 2 months' duration) and similar conditions such as Post Polio Syndrome (PPS) are being held in Sheffield."
"The yoga session consists of relaxation and breathing exercises which require no movement at all and some gentle postures which require physical movement (optional). Participants are encouraged to keep within their own limits. Much of the time is spent lying down but there may be a little sitting. Participants are welcome to come and only do the breathing and relaxation exercises if they don’t feel up to doing any physical movements."
"The teachers are all experienced in therapeutic yoga. The main teacher, Linda Sue Arnold, formerly Linda Sole, specialises in remedial yoga and has taught yoga for people with ME and CFS at the Yoga for Health Foundation."
Note: This website is also a Satori-5 reciprocial-link host. See "Credit No-35"
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www.sheffieldyogaforme.org
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L-031
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M.E. Support
"M.E. Support is an extensive Website founded by M.E. sufferer Louise Sargent. The site covers many aspects of ME (also known as PVFS/ CFS / CFIDS) & other chronic fatiguing illnesses."
Note: This website is also a Satori-5 reciprocial-link host. See "Credit No-41"
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www.mesupport.bigstep.com
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L-032
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A Hummingbirds Guide To M.E.
Information on severe Myalgic Encephalomyelitis
What is ME/ICD-CFS?
"Myalgic Encephalomyelitis (ME/ICD-CFS*) is a debilitating acquired illness which has been recognised by the World Health Organisation (WHO) since 1969 as an organic neurological disorder. ME/ICD-CFS can occur in both epidemic and sporadic forms and appears to be remarkably similar to post-polio syndrome (an enteroviral triggered disorder) (Hooper et al. 2001 [Online])."
"Although primarily neurological, sufferers also experience significant problems in virtually all bodily systems. Symptoms may be manifested by cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and also musculo-skeletal dysfunctions and damage (Marshall & Williams 2005, [Online])."
"One of the core features of ME/ICD-CFS is that the severity of symptoms varies unpredictably from week to week, day to day and hour to hour; another is extreme exercise (or activity) intolerance, physical exertion causes relapse and continued physical exertion causes disease progression. Symptoms can be extremely severe, and in some cases ME/ICD-CFS can be fatal (Dowsett a [Online])."
Note: This website is also a Satori-5 reciprocial-link host. See "Credit No-43"
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www.ahummingbirdsguide.com
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L-033
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ME/CFS Activism Gear
Tell the WORLD about ME/ICD-CFS!
"Items available for purchase are stickers, bags, a variety of shirts, buttons, magnets, mousepads, journals and coffee mugs. Each item is available in a variety of different designs. Profits made on all items are marginal and 100% of what there is will go towards research into ME/ICD-CFS. These items are made available for sale by CafePress.com."
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www.cafepress.com/ahgtm_gear
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L-034
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M.E. Support - Norfolk (UK)
Orignal source of the Professor Hooper ME DVD
"Myalgic Encephalomyelitis is a serious life-changing physical illness, recognised by the World Health Organisation (WHO); listed at ICD-10-G93.3 as an organic-biomedical neurological disorder. This classification is supported by a considerable body of peer-reviewed clinical and research evidence. For example, SPECT and PET brain scans of M.E. sufferers have revealed physical tissue damage and severely reduced cerebral blood-flow – made worse by exertion. Autopsies have confirmed such damage/infection."
"In spite of this, in the UK, ME/CFS sufferers are being systematically persecuted and driven towards an outrageous situation where they shall be (mis)treated as psychiatric patients and face reduced access to health services and welfare benefits."
"Professor Hooper's presentation and the associated documents reveal the compelling truth about the biomedical nature of M.E. and those who, in the face of this evidence, assert that “M.E. is simply a belief, the belief that one has an illness called M.E.” (Prof. Simon Wessely, source)."
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www.mesupportnorfolk.org.uk
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L-035
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M.E. Chat
An informal mailing list for people in the UK with
Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS)
Introduction to ME Chat:
"The ME Chat mailing list was created for people with ME/CFS in (or from) the UK and Europe, and their carers, friends and family. We discuss subjects more relevant to UK healthcare and politics, and not always acceptable on the 'big list' (alt.med.cfs / CFS-L).
How Does ME Chat Work?
Anyone subscribed to the list can send email to one central address (mechat-l@listserv.aol.com) and from there it is sent out to all the subscribers."
"The list currently averages 40 posts each day but on a busy day there could be as many as 100 posts. Many of the posts are replies to previous messages. You can reply to the whole list, or write to people privately, whichever is more appropriate."
Typical Subjects on the List:
"The list is not purely for the discussion of ME/CFS issues (and related illnesses such as Fibromyalgia), but for us to talk about whatever we feel like, knowing that the other readers understand when we waffle, get confused, or forget what was talked about the day before."
"Subjects are often connected with ME/CFS or the silly things we do when suffering from the 'Brain Fog', and others are just interesting or funny as a bit of humour works wonders for some of us. We are also starting to add news and information as we find out about it. People on the list also contribute to the alt.med.cfs and uk.people.support.cfs-me newsgroups."
Discussion topics include:
* ME/CFS symptoms.
* ME/CFS medications and treatments.
* UK disability benefits (DLA, DWA, mobility, etc).
* books and television.
* jokes and poetry.
* general chat.
* moans and groans.
* voyages of the imagination!
Important:
"Most talk of medications and treatments is from non-qualified people. You should always consult your GP about any medication or treatment."
The reasons we don't recommend this list for most people outside of the UK are:
* The medical information and discussion of benefits usually relates to the UK.
* UK humour does not always export without offence.
* We aim to keep the traffic down to a readable amount.
Usage Guide:
"Most topics are suitable for discussion on MEChat."
Here is a quick summary of the rules and requests:
* No personal attacks or 'flames'.
* No reposting of mail without the authors permission.
* The list may not be used for commercial purposes.
* All messages should be in plain text, without attachments.
* No deliberate deception.
* Be considerate to the people who will read your message.
* Nobody should feel under any pressure to reply to any message.
Making a First Post:
"Please don't let the number of rules put you off posting to the list. If you send a friendly post to the list you can be sure that it will be well received regardless of whether it follows the rules exactly."
"Many people use their first post to introduce themselves. A short post talking about your life, your interests or your illness will always be appreciated. Other people use their first post to ask a question and find the list members are always pleased to help."
"You may prefer to join in an ongoing conversation. Although messages are often addressed to someone by name they are intended for the whole list so if you see a conversation that interests you feel free to join in."
"As it is your first post it is likely that you will receive a reply, but don't feel rejected if you don't see a reply immediately. It is quite normal for replies to appear several days after the original message was sent for both technical and health reasons."
Note: This website is also a Satori-5 reciprocial-link host. See "Pending"
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MCS Section
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