The inclusion of a site in this list indicates that the material on that site is IN GENERAL supported by this website, however this should not be taken to indicate full support for all material available on that site.
The use of the term 'ME/CFS' is not supported by this website in any capacity, for example, as it contributes to the confusion between M.E. and 'CFS.' This website does not support the mixing together of M.E. and CFS in any form, or the use of the term 'fatigue' to describe the symptomology of M.E.
*O**O* The Nightingale Research Foundation
The NRF is a charitable foundation located in Ottawa, Canada founded by the world's leading M.E. expert - Dr Byron Hyde MD. In 1984, Dr. Hyde began the full-time study of the disease process known as Myalgic Encephalomyelitis. He has worked exclusively with M.E. patients since 1985. In 1988, Dr. Hyde organized an association and founded The Nightingale Research Foundation, dedicated to the study of Myalgic Encephalomyelitis.
'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. 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.'
Click on the link to read more articles by Dr Byron Hyde M.D.
(This website is highly recommended, although it is fervently hoped that they will soon change their minds over their baffling use of the confusing and misleading term 'ME/CFS' and the constant comments on the site about the similarities between M.E. and CFS - which are absolutely NOT repeated or supported in Dr Hyde's papers on M.E. The primary point of Dr Hyde's work is that M.E. and CFS are NOT the same so the websites use of these terms etc. is hard to understand. This site is one of the most important sites there is, and so it is vital that readers are not confused about Dr Hyde's brilliant work and the vast differences between M.E. and 'CFS')
*O* The 25% M.E. Group
'There are approximately 200,000 people in the UK who suffer from M.E. Some do recover. However, approximately 25% of sufferers remain long term ill and severely disabled by the disease. Many are left isolated, housebound or even bedbound by the effects of the illness. The 25% M.E. Group exists to support all who have the severe form of M.E. and those who care for them. This includes people who are housebound, bedbound and wheelchair users.
Our Patron is the Countess of Mar. Our medical advisor is Dr. Betty Dowsett.'
*O* The Committee for Justice and Recognition of Myalgic Encephalomyelitis
This website compellingly distills all the facts about the political cover up of ME and all the issues both medical and political surrounding M.E. This is an excellent resource both for those new to ME politics and experienced activists alike. Particular attention is given (as it should be!) to the outbreaks of M.E., and the links between M.E. and polio.
*O* ME Site: Information on Myalgic Encephalomyelitis
'Over 1 million people worldwide suffer from Myalgic Encephalomyelitis (ME). This website is made for these people, and for their family and friends.' This site has existed since 2003 as a Danish site, and this new English version was made public late 2005. The 'ME and Children' and 'Social Consequences' sections in particular are well-worth a read. Created by M.E. advocate Lajla Mark.
*O* Quintero's ME site: a small site, but it contains some excellent observations on the illness as well as a collection of relevant research.
*O* RiME (Campaigning for Research into Myalgic Encephalomyelitis) is a UK based group set up because of intense dissatisfaction with the national ME charities during the last decade. They have led a number of independent campaigning efforts. Includes information about FoRT.
*O* MEAction U.K.
This site, run by Stephen Ralph, contains links to many excellent M.E. activism articles and more. There is also a Yahoo group for the site.
*O* Website for Sophia by her mother Criona
Today, 9am, sees the launch of a website I have created in memory of my beautiful daughter who died of Myalgic Encephalomyelitis.I have tried, without success, to gain justice from the GMC and Social Services over the dreadful treatment my daughter received, but to no avail. I have written to two Attorney Generals, numerous MPs and solicitors - again with no result. It seems that ordinary people like me and my daughter can be treated in the most appalling way and no-one is accountable.
I have therefore decided to publish all letters and communications appertaining to my daughter's ordeal at the hands of the authorities, in an effort to ensure that this should never happen again to someone suffering from ME. I hope that the doctors and social workers involved in my daughter's care will now reflect on what they did and learn from their mistakes and intransigence. I hope that other professionals will also learn lessons from what I have published and that no other person with ME will be treated so callously.
*O* Greg and Linda Crowhurt's 'ME Training Co' website
*O* Satori 5 is an excellent resource from Gordon D McHendry in the UK with a large variety of useful articles and bits and pieces about ME (and MCS).
Invest in M.E. are an independent UK group (with links worldwide) campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3. Their aim is to bring together like-minded individuals and groups to campaign for research and funding to establish better medical understanding of M.E.(Note that this group has recently changed its focus to 'subgroups of 'ME/CFS' unfortunately.)
*O* John Sayer's website contains papers by John Sayer, and other authors, on the politics surrounding M.E. in the UK. John Sayer is associated with M.E. Support-Norfolk (UK).
*O* The NICE Guidelines Blog: In search of medical honesty
Created by an Australian GP with Myalgic Encephalomyelitis, who says:
"The Nice Guidelines are biased publications based on the GOBSART (Good Old Boys Sitting Around a Table) approach. This Blog however is not only evidence based but also uses critical reading to judge papers and articles. I also use common sense and listen to others. And finally I read both psychiatric and medical evidence and opinions from around the world to come to a conclusion. I’m not sponsored by anybody or paid by whatever company as seems to be the norm with many psycho people who publish the same article almost on a weekly base. If you don’t read this blog, you will miss out on “accredited” medical education. If you do read it, you may actually become a doctor who doesn’t stop thinking or forgets to ask critical questions. Many good things, including satisfied patients are at your command."
Website for Mike Dessin
If you can, please help support the care of Mike Dessin who has very severe ME and whose family can no longer afford basic care for him. Mike's father says' I AM STARTING A FUND TO HELP KEEP HIM ALIVE. PLEASE HELP!'
Simon Overton's anti-'Conversion disorder site
The ME Society of America
This site was founded by Maryann Spurgin Ph, D. This website clearly acknowledges - among other things - that fatigue is NOT the defining symptom of M.E. There are also reviews and summaries of a number of important books and studies on the site.
MEFreeForAll.org
"ME Free For All is a single meeting place for people with M.E., their carers, doctors and researchers to gather. Everyone concerned with M.E. may have access to the same information and exchange views here."
The National ME and FM Action Network
This is a Canadian, registered, non-profit organization. This is the group that spearheaded the drive for the groundbreaking (although significantly flawed) Canadian Guidelines for 'ME/CFS' You can read more about the benefits and the limitations of the Canadian Guidelines at: Canadian Guidelines Review
NAME-US.org
The recently formed National Alliance for Myalgic Encephalomyelitis was created by Steven Du Pre and Lois Ventura.
'The NAME-US website was established to address the issues of recognition and definition, and to raise awareness of this devastating neuroimmune disease that has afflicted nearly a million people in the U.S. and millions worldwide. Our website is dedicated to those clinicians and researchers worldwide who, throughout nearly a century: have worked to uncover and define the distinct clinical and physiological aspects of this disease; who have persevered in advocating and caring for ME/CFS patients despite the adversities that have led to stigmatization of patients, doctors and scientists alike; and who continue to work on our behalf.'
Peggy Munson’s book ‘Stricken: Voices from the Hidden Epidemic of CFIDS’ is one of the best ME or ICD-CFS books there is. You can buy copies from this site and it also has Peggy’s fantastic Awareness day letters from 2001, 2002 and 2003.
United Mitochondrial Disease Foundation - Myalgic Encephalomyelitis is, among other things, a mitochondrial disorder. This site makes for very interesting reading and Includes valuable advice on treatments.
MCS-International.Org Gordon D McHendry has also created this new site which in 2005 launched its 'world-wide campaign for full medical recognition of the physical nature of Multiple Chemical Sensitivity ( MCS ) and other forms of Chemical Injury ( CI ), In addition, MCS-International.Org will offer the latest news and essential information on these chemical induced illnesses and provide access to a wide range of helpful resources for sufferers, their carers and other legal and medical professionals involved with these life-destroying conditions.'
R.E.S.C.I.N.D.
Created by Tom Hennessy.
Dr Cheney’s papers and DVDs
This US (DFW) site details Dr Cheney's thoughts on treating M.E. or ICD-CFS. See also the Dr. Paul Cheney M.D page on this site.
A Place for ME
'A Place for ME is a small Uk project so you may not have heard of us before. Our focus is the provision of adapted housing and 'specially trained carers for people with Severe ME. More detail is available on our website.'
Grace charity for ME
'The Grace Charity for M.E. [Myalgic Encephalomyelitis] is currently a very small operation in Kent, England. We were approved for charity status in November 2006. The Charity is based on Christian prayer. However, we want to help M.E. sufferers of any faith or of no faith at all. We have compiled a document, “Saying No Can Be Positive” to empower sufferers who wish to refuse psychological therapies.'
ME Forum and The Norwegian ME Association Website
Translated copies of M.E. the Medical Facts and The Ultra-comprehensive M.E. Symptom List (from this website) are available on these sites (in Norwegian).
