This website is so large that its features can no longer all be taken in at a glance. In order for site visitors to find the information they need more quickly, the new Information Guides page features sections relevant to each of the different types of visitors to the site. Guides available so far include the following: (click on the most appropriate description)
Guides available so far include the following: (click on the most appropriate description)
Reading, thinking and being online is so difficult with very severe M.E. so I'll try to be as brief as possible.
To learn some of the basic facts of M.E. see: What is M.E.? Summary (2 pages) or What is M.E.? Super Summary (1 page)
Treating and living with M.E. is THE most important paper for M.E. patients! It is an overview on how to manage M.E. as well as how to treat and improve it.
If you are able to read more than that, you might like to also read: The 2 page M.E. The Medical Facts - Summary and The M.E. Symptom Summary
There is also information available on treating M.E. and coping with M.E.:
Information on confirming a M.E. diagnosis through testing:
Information to help friends and family members understand M.E. better:
The most important papers for carers are:
For information specific to severe M.E., see also: The severity of M.E. page.
If you do better listening to audio than reading, check out: Information in audio or video format
If you do better reading information on paper than on the screen, you can go to the new Document Downloads page and download/save as many documents as you need, to print later, in a few minutes. Large text versions are available of all major papers.
The new Caring for the M.E. Patient book is HIGHLY recommended for all M.E. patients.
If you're extremely ill and disabled and are having real problems downloading files, send an email to this email address and assistance will be provided, if possible. (If you specify which files you need, and in what format, files may be able to be emailed to you directly).
If you are able to read more information than this, see the 'information guide for M.E. patients' below.
These are some of the main categories of information you might need if you have M.E.:
To learn some of the basic facts of M.E. see:
Information on treating M.E. and coping with M.E.:
Information on confirming a M.E. diagnosis through testing:
Information to help friends and family members understand M.E. better:
The most important papers for carers are:
The most important activism and advocacy papers are:
See also articles by Dr. Elizabeth Dowsett and Dr Byron Hyde. These are the world's leading M.E. experts. You may also like to view the Articles and research sorted by topic and Articles and research sorted by author sections which contain links to hundreds of articles. Sections include:
Patient accounts of M.E. you may like to read include:
You might also like to pass the following papers on to patients misdiagnosed with 'CFS':
Other site features/papers you may find useful include:
If you do better listening to audio than reading, check out: Information in audio or video format
If you do better reading information on paper than on the screen, you can go to the new Document Downloads page and download/save as many documents as you need, to print later, in a few minutes. Large text versions are available of all major papers.
You can also print webpages like this one, straight off the site.
The new book Caring for the M.E. patient is highly recommended for all M.E. patients.
If you'd like to be informed by email of all new additions to the site, just send an email to this email address with 'newsletter' in the subject line.
The most important papers you NEED to read if you have been told you have 'CFS' or you identify as having 'CFS' are:
These papers have been created especially for patients in your (very unfortunate) position. Please don't just accept a 'CFS' misdiagnosis, you are worth proper medical care and a correct diagnosis and treatment.
See also:
It is also highly recommended that you read either the 10 page What is M.E.? paper, or the 2 page summary of this paper: What is M.E.? Summary
There is also a lot of information very relevant to you in video and audio formats, check out: Information in audio or video format
If you would like to learn more about how to correctly identify M.E., please read What is M.E.? or (even better) What is M.E.? Extra extended version.
To read more about why 'CFS' is never a useful diagnosis, and why a diagnosis of 'CFS' can only ever be a misdiagnosis see Myalgic Encephalomyelitis is not fatigue, or 'CFS' along with The misdiagnosis of CFS.
See also: Who benefits from 'CFS' and 'ME/CFS'? and M.E. vs MS: Similarities and differences
For more information on diagnosis and testing appropriate for M.E. see: Testing for Myalgic Encephalomyelitis (this paper includes links to Dr Hyde's 'Nightingale Definition of M.E.' which is essential reading for any doctor with an interest in M.E.)
For more information on treating M.E. and avoiding inappropriate treatments, and so on, see:
Also highly recommended are each of the articles by Dr. Elizabeth Dowsett. and Dr Byron Hyde. including: A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome and The Complexities of Diagnosis and most importantly The Nightingale Definition of M.E.
You may also like to view the Articles and research sorted by topic and Articles and research sorted by author sections which contain links to hundreds of articles. Sections include:
Doctors are also directed to the Book Reviews section. The book: The Clinical and Scientific Basis of Myalgic Encephalomyelitis edited by Dr Byron Hyde M.D. in particular is vital reading for anyone with an interest in M.E. This book provides, in one superb 75-chapter source, an up-to-date, comprehensive account of current knowledge concerning the history, epidemiology, children with M.E., investigation, virology, immunology, muscle pathology, host response, food intolerance, brain mapping, neurophysiology, neuropsychology, sleep dysfunction and much more. This is an essential reference book for medical, government and public library reference rooms. This text is a unique vehicle for researchers, physicians and other health education and government officials, and is also easily understandable by the general public. All funds from the sale of this book go towards M.E. research and advocacy. See the Review of this book for more information and for purchasing details.
The new Caring for the M.E. Patient book is HIGHLY recommended for all doctors treating M.E. patients.
Thank you for your interest in this topic.
The most important papers for carers are:
The quickest and best way to get some of the basic facts about M.E. is to read either the 10 page What is M.E.? paper, or the 2 page summary of this paper: What is M.E.? Summary, so these papers are also recommended.
The new Caring for the M.E. Patient book is HIGHLY recommended for all carers of M.E. patients.
The quickest and best way to get some of the basic facts about M.E. is to read either the 10 page What is M.E.? paper, or the 2 page summary of this paper: What is M.E.? Summary
Also highly recommended is: A Million Stories Untold and So you know someone with M.E.? these papers was written specifically for family and friends of M.E. patients. See also: M.E.: The shocking disease and M.E. vs MS: Similarities and differences
If you have any involvement in the care of the person with M.E., you may also like to read:
Also note that one of the most important things for you to be aware of is the uselessness and unreliability as credible information sources almost all 'CFS' 'CFIDS' 'ME/CFS' and other advocacy groups are (in addition to the mainsteam media). This is especially true with the largest groups in each country, who have clearly sold patients out for their own benefit. To read more about this problem (and mention of those few groups who are reputable) see: Problems with 'our' M.E. (or 'CFS' 'CFIDS' or 'ME/CFS' etc.) advocacy groups and My comments about the current (worrying) state of Australian ME societies and Problems with the so-called "Fair name" campaign: Why it is in the best interests of all patient groups involved to reject and strongly oppose this misleading and counter-productive proposal to rename ‘CFS’ as ‘ME/CFS.’
Also, if you'd like to make a donation to help fund M.E. advocacy, see: Donations.
To understand more about why this abuse is happening and why it has been allowed to happen, see: Who benefits from 'CFS' and 'ME/CFS'?
The new Caring for the M.E. Patient book is HIGHLY recommended for all friends and family and partners of M.E. patients.
Having M.E. is hell, but having M.E. and being treated unfairly or inappropriately by friends and family is ...beyond description.
Thank you so much for taking the time to learn some of the facts of M.E.
Tragically, children as young as 5 (or in rare cases even as young as 3) can be affected by M.E. There is a real need for more information and research on M.E. specifically geared to children as currently very little is available but some additional resources parents or carers of M.E. children may find useful include the small collection of relevant articles are also available on the: M.E. and Children page.
To understand more about why this abuse is happening and why it has been allowed to happen, see: Who benefits from 'CFS' and 'ME/CFS'?
You may also like to read, and pass on, M.E. vs MS: Similarities and differences
See also the 'information guide for M.E. patients' as all these same recommendations apply to the parents of M.E. children.
The new Caring for the M.E. Patient book is HIGHLY recommended for all parents of M.E. patients.
With their parents armed with good quality information, children with M.E. have a far better chance of a more positive outcome and a less traumatic experience generally. YOU are their best asset and can make an enormous difference to how this illness affects them in many ways. In other words, appropriate support from parents is crucial.
The quickest and best way to get some of the basic facts about M.E. is to read either the 10 page What is M.E.? paper, or the 2 page summary of this paper: What is M.E.? Summary
Once you've done that, it would be really great if you would correct people when they make ignorant statements about M.E.
If you're feeling especially helpful, perhaps you could print out some copies of the What is M.E.? Summary or the What is M.E.? Super Summary (which can be downloaded in a printable leaflet or folded business card format) and hand them out to friends and family, or to your doctor.
To understand more about why this abuse is happening and why it has been allowed to happen, see: Who benefits from 'CFS' and 'ME/CFS'?
You may also like to read, and pass on, M.E.: The shocking disease, M.E. vs MS: Similarities and differences and Why care about M.E.?
On behalf of all patients involved, thanks so much for your interest and your compassion.
(Also, if you would like to make a donation towards M.E. advocacy, see: Donations.)
There are so many myths about Myalgic Encephalomyelitis and many of them are so widespread that it is not uncommon to read articles in the media composed ENTIRELY of such material. Articles which do not contain even one legitimate fact about the illness!
For a long time this type of flawed and heavily biased information, or propaganda, was all that was (readily) available but thankfully this is no longer the case and we now have access to an abundance of more scientifically accurate information that could really change things for the better for those of us with M.E. Tragically however, this information keeps being blocked at every stage by all the old harmful myths and propaganda that are still being defended and promoted by so many. It is a real problem.
Journalists have let the 'CFS' scam continue for 20 years virtually unchallenged. The media is indirectly responsible to a large degree for the continued abuse and neglect of M.E. patients. If you would like to try to change this, then THANK YOU, and please read on.
The quickest and best way to get some of the basic facts about M.E. is to read either the 10 page What is M.E.? paper, or the 2 page summary of this paper: What is M.E.? Summary
Also note that one of the most important things for you to be aware of, that most journalists are NOT, is the uselessness and unreliability as credible information sources almost all 'CFS' 'CFIDS' 'ME/CFS' and other advocacy groups are. This is especially true with the largest groups in each country, who have clearly sold patients out for their own benefit. To read more about this problem (and mention of those few groups who are reputable) see: Problems with 'our' M.E. (or 'CFS' 'CFIDS' or 'ME/CFS' etc.) advocacy groups and My comments about the current (worrying) state of Australian ME societies and Problems with the so-called "Fair name" campaign: Why it is in the best interests of all patient groups involved to reject and strongly oppose this misleading and counter-productive proposal to rename ‘CFS’ as ‘ME/CFS.’
There is also: M.E. advocacy and 'CFS' advocacy are not the same and My comments on the CDC's latest 'CFS' press release. Be very careful that those who say they are M.E. advocates actually are, before you accept them as repuatable sources of information: or else you will again just be compounding the problem.
You may also like to read: The myths about Myalgic Encephalomyelitis and Myalgic Encephalomyelitis is not fatigue, or 'CFS'. If you are still after more detailed information then please see: What is M.E.? Extra extended version
To understand more about why this abuse is happening and why it has been allowed to happen, see: Who benefits from 'CFS' and 'ME/CFS'?
If you can, it is also highly recommended that you read M.E. vs MS: Similarities and differences and The WHO ICD in relation to M.E. and ‘CFS’
The new Caring for the M.E. Patient book and the shorter What is M.E. book are recommended for all journalists and politicians with an interest in this area.
For politicians the same is true. Your inaction is indirectly responsible to a large degree for the continued abuse and neglect of M.E. patients. If you would like to try to change this, then THANK YOU, and please read the above texts.
To all the human rights groups out there.. to be blunt: WHERE HAVE YOU BEEN? It has been 20 years and you have done nothing at all to help us even though our need is so urgent.
If you would like to help, please read What is M.E.? or (even better) What is M.E.? Extra extended version in order to understand the basic facts and history of M.E. The myths about Myalgic Encephalomyelitis may also be useful.
Also note that one of the most important things for you to be aware of is the uselessness and unreliability as credible information sources almost all 'CFS' 'CFIDS' 'ME/CFS' and other advocacy groups are (in addition to the mainsteam media). This is especially true with the largest groups in each country, who have clearly sold patients out for their own benefit. To read more about this problem (and mention of those few groups who are reputable) see: Problems with 'our' M.E. (or 'CFS' 'CFIDS' or 'ME/CFS' etc.) advocacy groups and My comments about the current (worrying) state of Australian ME societies and Problems with the so-called "Fair name" campaign: Why it is in the best interests of all patient groups involved to reject and strongly oppose this misleading and counter-productive proposal to rename ‘CFS’ as ‘ME/CFS.’
To understand more about why this abuse is happening and why it has been allowed to happen, see: Who benefits from 'CFS' and 'ME/CFS'?
The M.E. vs MS: Similarities and differences paper is also highly recommended along with The WHO ICD in relation to M.E. and ‘CFS’
If you would like to more fully understand the effect the 'CFS' insurance scam has had on M.E. patients over the last 20 years, you may also like to see: The effects of CBT and GET on patients with Myalgic Encephalomyelitis, The CBT and GET database and Smoke and Mirrors as well as Section 5: Patient accounts of CBT and Section 6: Patient accounts of GET.
The new Caring for the M.E. Patient book and the shorter What is M.E. book are recommended for all human rights groups.
Please help us. M.E. is so severe and disabling that we cannot march and protest ourselves. We desperately need YOU to help and we need this to happen NOW.
A final note: What can you do to help people with M.E.?
People with M.E. have only a tiny minority of the medical, scientific, legal and other potentially supporting professions – or the public – on their side. As the Committee for Justice and Recognition of Myalgic Encephalomyelitis explain:
There is no immunity to M.E. The next victim of this horrible disease could be your sister, your friend, your brother, your grandchildren, your neighbour [or] your co-worker. M.E. is an infectious disease that has become a widespread epidemic that is not going away. We must join together, alert the public and demand action (2007, [Online]).
That is what is needed; people from all over the world to stand up for the truth about Myalgic Encephalomyelitis. Individual physicians, journalists, politicians, human rights campaigners, patients, families and friends of patients and the public – whether they are affected yet by M.E. or not. That is the only way change will occur; through education and people simply refusing to accept what is happening any more.
So what you can do to help is to PLEASE help to spread the truth about Myalgic Encephalomyelitis.
This appalling abuse and neglect of so many severely ill people on such an industrial scale is truly inhuman and has already gone on for far too long.
People with M.E. desperately need your help.