Before reading this research/advocacy information given in the external links below, please be aware of the following facts: 2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.
1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.
A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.
In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.
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
(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' which are absolutely NOT repeated or supported in Dr Hyde's papers on M.E. 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 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* 'M.E. is not CFS' (is the only Twitterer recommended by HFME!)
The author writes:
"Anyway without any pressure, for anyone who feels so inclined, please follow me on Twitter. Log into twitter.com and look for @MEisnotCFS
And wherever you are - in freezing Britain or sweltering Tasmania - I'm thinking of you and willing the day to come when we are all treated seriously & given the medical support we need. Thank you.
Hummingbirds - best ME site. Nightingale - best ME definition. Now I'm "tweeting" about this - coincidence or what?"
*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* 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.
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).
Simon Overton's anti-'Conversion disorder site
"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."
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.'
This US (DFW) site details Dr Cheney's thoughts on treating M.E. Cheney provides useful information on treatment, but is in no way a recommended source of advocacy information or informnation about the cause of M.E. etc. See also the Dr. Paul Cheney page on this site.
'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.'
'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?. 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).
Our Mission: Globally demonstrating love by providing assistance and resources for all people with disabilities.
"We strive to provide knowledgeable information, counseling and assistance to all those who are afflicted with a disability and their families. To generate global awareness through the local communities. Working along side other non-profits in their endeavors to allow more disability support programs to be started. 80% of HHD is focused on programs and services. Through the support of communities, grants, donations and fundraising will allow us to generate enough funding for each new program and the services that will be provided. To share in the aloha spirit in the State of Hawaii and throughout the world.
Today people with disabilities and their families are struggling to pay for healthcare, food, utilities and other necessities. Having the right information is important for a person with a disability or someone who cares for the disabled. Seeking facts about living with, why, the challenges, finding the right doctors and learning life skills for the future are extremely important."
[This group has admirably expressed a real interest in helping to get the facts about M.E. to a wider audience. They also have a great attitude to their advocacy work in general and deserve every success.]
These sites are NO LONGER supported at all by HFME as they support the flawed M.E. = CFS or M.E. = 'ME/CFS' concepts:
'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.
(Note that this group has recently changed its focus from M.E. to 'subgroups of 'ME/CFS' very unfortunately.)
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 from M.E. to 'subgroups of 'ME/CFS' unfortunately.)
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.'
(Note that this group focuses on 'ME/CFS' unfortunately.)
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
(Note that this group is a 'ME/CFS' group unfortunately.)
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.
(Note that this group has recently changed its focus from M.E. to 'subgroups of 'ME/CFS' unfortunately.)
Many good articles and research here, although not every study should be assumed to relate to M.E. specifically even if the term M.E. is used.
Entrez PubMed You can search for studies and research into any aspect of ME or 'CFS' on this site. (Not all studies relate to M.E.)
Co-Cure Archives Thousands of articles here on ME and 'CFS' (and 'fatigue!'); good, bad and ugly! (Not all studies/articles relate to M.E.)
M.E. Research UK (Not all studies relate to M.E., despite the use of the term M.E. This group is now concerned with studying subgroups of 'CFS' rather than M.E.)
CFS Research (Not all studies relate to M.E.)
Journal of Chronic Fatigue Syndrome (Not all studies relate to M.E. and most do not)
See also: http://mcgoodwin.net/downloads/cfsfmna.txt (This page is very large) (Not all studies relate to M.E. and most do not)
Ingeborg has extremely severe ME and her ‘Borg of Space’ site is full of handy hints, information about wheelchairs and other equipment and all sorts of other things as well as details of her own story and experiences which are inspiring and heartbreaking to say the least. It is available in an English and a Dutch version, just click on the appropriate language button as you enter the site.
Ciara MacLaverty's website contains poetry, short stories, some articles she has written about living with severe M.E. and also a blog. Ciara was born in 1968 in Belfast and has lived in Scotland for most of her life and has has M.E. since she was 18.
Click here to check out the homepage for more information.
Bose Their noise-canceling headset is a great tool for living with severe ME-related hyperacusis. I recommend their Quietcomfort acoustic noise-cancelling headset.
Sony and other brands now also sell cheaper headphones which can be bought from www.amazon.com for good prices also.
Better World Books THE place to buy all your books. Their prices are great (and sometimes unbelivable), they sell used and new books, postage is free in the US and only $3.95 internationally, the use carbon offsets in shipping, and best of all, ALL profits go towards funding literacy efforts worldwide. The site says:
'Better World Books collects and sells books online to fund literacy initiatives worldwide. With more than two million new and used titles in stock, we’re a self-sustaining, triple-bottom-line company that creates social, economic and environmental value for all our stakeholders.
We were founded in 2002 by three friends from the University of Notre Dame who started selling textbooks online to earn some money, and ended up forming a pioneering social enterprise — a business with a mission to promote literacy.
We’re not a traditional company with an add-on “cause” component. Social and environmental responsibility at the core of our business. You could say it's in our DNA.
We’re breaking new ground in online bookselling. We believe that education and access to books are basic human rights. That's why books sold on BetterWorld.com help fund high-impact literacy projects in the United States and around the world.
All books are available with free shipping to any location within the United States (or $3.97 worldwide). And in case you’re concerned about your eco-footprint, every order is shipped carbon neutral with offsets from Carbonfund.org.'
The Hunger Site If you make this page your homepage, you can in just one second a day, donate a free cup of food to people in extreme poverty all over the world. I try to click once a day (that is the limit anyway) and I would highly recommend it! Nothing makes you feel better than helping others.
You can slso help people all over the world by buying clothing, jewellery and other things from the hunger site shop. The jewellery is particularly nice and well priced and makes great gifts - especially for Christmas, as really, what better way to celebrate than by ethical shopping that helps people in real need.
They say:
'The Hunger Site was founded to focus the power of the Internet on a specific humanitarian need: the eradication of world hunger. Since its launch in June 1999, the site has established itself as a leader in online activism, helping to feed the world's hungry. On average, over 220,000 individuals from around the world visit the site each day to click the yellow "Click Here to Give - it's FREE" button. To date, more than 300 million visitors have given more than 500 million cups of staple food.
The staple food funded by clicks at The Hunger Site is paid for by site sponsors and distributed to those in need by Mercy Corps and Feeding America (formerly America's Second Harvest) . 100% of sponsor advertising fees goes to our charitable partners. Funds are split between these organizations and go to the aid of hungry people in Africa, Asia, Eastern Europe, the Middle East, Latin America and North America.'
VRP sells vitamins, minerals and all sorts of high quality supplements.
If you make a purchase from VRP and type in my affiliate number of 647871 when you order 15% of the total cost of your order will be donated. HFME will get 100% of all monies received through this affiliate program. This offer applies to new VRP customers only. It applies to all VRP products, but only for one year from your first date of purchase (after one year I’ll no longer receive 15% of the cost of your order).
For more infomation see: Treating Myalgic Encephalomyelitis - The Basics
iHerb also sells vitamins, minerals and all sorts of high quality supplements
If you are a new customer to iHerb, and you put in my code when you order, you get 5$ off your first order, and (as explained above) 4% of your order total for the next year will be donated to the Nightingale Research Foundation and HFME. iHerb sells everything from neti pots, to NADH, to ubiquinol and their international postage charges are very reasonable. the code is JOD573
For more infomation see: Treating Myalgic Encephalomyelitis - The Basics
Laptop Laidback - a stand for use with laptop/notebook computers which lets you use your computer while lying on your back in bed.
It is essential that you lie down to use the computer if you have M.E.! I very highly recommend this laptop stand.
Triple Tell Timer - A timer for use by people with severe hyperacuity (or who are deaf). It flashes a light or vibrates instead of making sound when it goes off, although it can also make sounds if you prefer as well. (There is no link, google for the best prices)
Oztion - Australia's answer to eBay! An online auction site. List items for free, and lots of stuff to buy as well for very good prices often. Good for buying Christmas and birthday presents from bed.
Zodee - an excellent online store for buying underwear, sleepwear and other clothing from your home or bed. They have good quality images of all items too, unlike some sites - recommended. (Importantly, they also have an excellent returns policy).
Roper and Parry Compounding Chemist 'Proudly continuing the traditional pharmacy practise of compounding. Our medications are tailor made for each of our customers. We also offer advice and information for customers and their healthcare practitioners.'
This company sells low dose Naltrexone (with a script from your doctor) in Australia.
New Zealand Nature Co - comfortable silk and 100% cotton clothing (Worldwide delivery)
Natural Instinct - low priced Australian personal care products which don't contain harsh chemicals and that are based on organic herbal formulas.