On this page:
The HFME was founded in May 2009.
The leader/founder of the group is Jodi Bassett.
The foundation will have an international committee, and will soon invite members from all over the world to join the foundation and to participate in its advocacy work.
Membership in the foundation will be conditional on members supporting the stated aims of the HFME.
Members will be encouraged to participate as much as possible in ongoing advocacy efforts, and to contribute constructive criticism and suggestions for the HFME.
The option to apply for paid membership in the HFME is coming soon!
Note that as of July 2009 this website is virtually completed (more than 95%) but that a small number of pages may not yet be available and a very small number of links may be incorrect. We appreciate your patience..
If you have M.E. or are the parent of a child with M.E. (or are linked in some other way to M.E.), and would like to play a part in HFME and in the discussion group involved in the setting-up and running of the HFME, please view the 'HFME's Aims' section below.
If you strongly support these aims, please email Jodi Bassett with your details. Small and large contributors are welcome! Every small contribution counts. We need your help to make this project work!
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.
Jodi Bassett is an Australian artist, graphic designer, writer and patient advocate.
In 1995, at the age of 19, Jodi went from being healthy and happy one day, to very ill and disabled with the neurological disease Myalgic Encephalomyelitis (M.E.) the next.
When first ill, Jodi was reduced to only being able to be 40% as active as pre-illness. Due to inappropriate medical advice leading to sustained overexertion (which causes serious and permanent bodily damage in M.E.) Jodi’s illness quickly went from moderate to extremely severe. By 1999 she was capable of less than even 5% of her pre-illness activity level.
Jodi’s illness has improved slightly, thanks to appropriate care, and has gone from extremely severe to severe. She still requires the help of part-time carers to live, and is currently housebound and almost completely bedbound. All of her activism and advocacy has been conducted from her bed using a laptop and a reclining laptop stand. Jodi is currently able to spend just half an hour a day (on average) on M.E. advocacy.
In 2004, Jodi Bassett started the ‘A Hummingbirds’ Guide to M.E.’ website to try to improve awareness of the facts of M.E., and to stop other M.E. patients from having their chance for significant recovery ruined, and being needlessly made far more severely ill and disabled, due to inappropriate medical advice. Inappropriate medical advice based on the false notion that M.E. is the same thing as ‘CFS.’
In 2009, with the help of a group of similarly-minded M.E. advocates from around the world, Jodi founded ‘The Hummingbirds’ Foundation for M.E.’ in order to advocate for M.E. patients on a much bigger scale and to get the relevant information to a much wider audience worldwide.
Note that many/most of the HFME committee, with a few exceptions, are similarly disabled. (Many are also, like Jodi Bassett and so many other M.E. patients, as severely disabled as they are due to inappropriate medical advice to exercise and because they were not told of the importance of rest in M.E.) The founding members of the HFME feel, however, that they have no choice but to try to do what they can for M.E. advocacy, as there simply is very nearly almost nobody else advocating for M.E. patients currently.
The vast majority of charities that started out advocating for M.E. patients are now actively supporting the same misinformation they were created to oppose. For 20 years now M.E. patients have been subjected to serious medical neglect and abuse, even unto death in some cases. The situation is actually worsening year by year and M.E. patients are becoming more and more desperate for real change.
The HFME is run by and for M.E. patients.
The foundation also aims to advocate for those non-M.E. patients given a meaningless ‘CFS’ diagnosis who also are not being served well/at all by the various ‘CFS’ charities, and who are also harmed by the bogus disease category of ‘CFS’ and the overwhelming triumph of financial greed over ethics, science and basic human rights.
For more infomation about Jodi Bassett (and to view some of her hummingbird and other artwork) see the About Jodi Bassett page.30 to 50% of the purchase price on each item is donated towards funding M.E. advocacy.
Details of some of the other major HFME contributors are coming soon, including:
To disseminate scientifically accurate information on Myalgic Encephalomyelitis (M.E.) to M.E. patients; to their carers, family and friends; to the medical profession and other professions which deal with M.E. patients; to policy makers; to M.E. advocates and activists and to the general public as per the paper What is Myalgic Encephalomyelitis? and as further discussed in HFME.
Reason for Aim 1:
An important fact about M.E. is that it can be made very much worse by overexertion. Overexertion can also cause death in M.E. It is vital that M.E. patients should be aware of the importance of avoiding overexertion in order that they may avoid needlessly causing themselves permanent bodily damage. Many M.E. patients have become severely affected, bed-bound or in constant pain, because of overexertion and some patients have died. Tragically, these negative outcomes happen all too often currently due to inappropriate medical advice.
M.E. patients currently receive little or no helpful medical advice, as most doctors have little understanding of the disease. Therefore it is essential that advice from M.E. experts on treatment and on management of the disease should be made available to patients.
To oppose false and meaningless disease categories such as ‘CFS,’ ‘CFIDS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘ME-CFS’ and Myalgic ‘Encephalopathy’ as per the papers What is Myalgic Encephalomyelitis? and Myalgic Encephalomyelitis is not fatigue, or ‘CFS’ and as further discussed in HFME. These bogus disease categories and concepts must be abandoned for the benefit of all the different patient groups involved.
Reason for Aim 2:
The fact that a person receives a diagnosis of ‘CFS’ (a) does not mean that the patient has M.E., and (b) does not mean that the patient has any other distinct and specific illness named ‘CFS.’
‘CFS’ can only ever be a misdiagnosis, and only prevents patients from getting a correct diagnosis and appropriate (even potentially life-saving or curative) treatment. See: The misdiagnosis of CFS.
M.E. and ‘CFS’ are in no way synonymous terms. M.E. is a distinct, scientifically testable and measurable neurological disease which occurs in epidemic and sporadic forms. ‘CFS’ is a wastebasket diagnosis based on the presence of the symptom of fatigue. If serious abnormalities are found on testing, a person no longer qualifies for a ‘CFS’ diagnosis. For further information on the difference between M.E. and ‘CFS,’ see What is Myalgic Encephalomyelitis?
Currently few doctors or researchers recognise M.E. M.E. patients currently receive little or no helpful medical advice, as most doctors have an entirely inaccurate understanding of the disease based on confusion with the bogus disease category of ‘CFS.’
Concepts such as ‘ME/CFS,’ ‘CFS/ME’ and ‘ME-CFS’ are just as problematic and meaningless as ‘CFS’ and in many ways more so as they incorrectly imply that M.E. and ‘CFS’ are synonymous terms.
The only groups which gain from the continuation of these fictional disease categories (to the detriment of patients) are vested interest groups. Groups which benefit from the continued dominance of the artificial ‘CFS’ construct include the following:
For more information see: Who benefits from ‘CFS’ and ME/CFS’?
To broaden the Internet presence of the HFME in order to disseminate information about M.E. and to correct misinformation about ‘CFS’ as per aims 1 and 2 above. This will involve improving internet accessibility as well as raising the profile of the website so that the website can be found easily by M.E. patients as well as those misdiagnosed with ‘CFS’ who have other diseases.
Where possible, the HFME will also work to raise awareness of M.E. and to correct misinformation about ‘CFS’ offline.
Reason for Aim 3:
There are currently very, very few websites available which accurately describe the historical, political and medical facts of M.E. and of ‘CFS’ and which also offer research papers by the world’s leading M.E. experts, papers on various aspects of the disease which are vital reading for patients and carers, and factual information and support as the HFME site does. For every factual website there are a hundred websites which support the same type of misinformation about M.E. and ‘CFS’ which causes patients so much harm.
M.E. patients suffer greatly from a lack of information on their condition, and urgently need the information offered by this site as do those patients misdiagnosed with ‘CFS’ who have other diseases. This information also urgently needs to become readily available to doctors, carers, human rights groups, the media and politicians and so on.
The HFME will primarily work to increase awareness of the facts of M.E. and to correct misinformation about ‘CFS’ via the internet, due to the restrictions commonly caused by M.E. to those M.E. patients working for the foundation (and also to those patients with M.E. whom we are trying to engage with). However, the HFME will also endeavour to participate in offline activism as much as is possible in order to reach a wider and more varied audience. This may include planning protests and rallies, participation in media interviews (in print, television and on radio) and offering critical feedback on media, redistributing printed information on M.E. to the public, publically offering support to patients (and their families) facing persecution due to the involvement of vested interest groups with M.E., organising nationwide or worldwide M.E. (or ‘abolishing CFS’) events on set days, organising fundraising events, and so on.
To make it clear that M.E. is not ‘medically unexplained’ or ‘mysterious’ as ‘CFS’ is and that an abundance of scientific evidence already exists which proves that M.E. is a disabling and potentially fatal neurological disease. The HFME makes available this valuable research which is generally overlooked.
Reason for Aim 4:
The historical facts of M.E. and the available scientific research on M.E. is being actively suppressed and deliberately ignored due to vested political interests.
The scientific research on M.E. is generally overlooked in favour of misinformation promoted by vested interest groups which involves various groups of fatigued patients who have been given a misdiagnosis of ‘CFS.’ Vested interest groups also disseminate outright propaganda and mistruths for financial gain. For more information see: Who benefits from ‘CFS’ and ME/CFS’?
There is an abundance of scientific research on M.E. dating back to 1934, and much of what happens to the body with M.E. is understood, but since 1988, the distinct neurological disease M.E. has been confused with the fictional disease category of ‘CFS’ has taken over. The available science on M.E. is actively suppressed and ignored due to involvement by vested interest groups. Currently few doctors or researchers are aware of even the most basic facts about M.E.
To defend the M.E. community (and those with non-M.E. diseases misdiagnosed with ‘CFS’) from counter-productive ‘activism’ strategies such as renaming ‘CFS’ with some variation of the term M.E.
Reason for Aim 5:
There are various ‘activism’ strategies based on false premises which promote harmful and unscientific terms and concepts such as ‘ME/CFS’ and Myalgic ‘Encephalopathy.’ Such terms and concepts obscure the reality of M.E., equate it with ‘CFS’ and harm the cause of M.E. These unscientific terms and concepts also cause harm to those with non-M.E. diseases misdiagnosed as ‘CFS.’
To promote appropriate research based on proper understanding of M.E., and to oppose flawed concepts such as the ‘subgroups’ of ‘CFS’ or ‘ME/CFS’ concept.
Reason for Aim 6:
Research is unfortunately being attempted based on the false ‘subgroups’ of ‘CFS’ or ‘ME/CFS’ concept. M.E. is not a subgroup of ‘CFS’ or ‘ME/CFS.’ Studying subgroups of heterogeneous groups of fatigue patients does not in any way help M.E. patients, nor any other distinct patient group.
This type of research based on flawed concepts and heterogeneous patient groups may also cause significant harm when it is wrongly thought to apply to distinct patient groups (as often occurs). This is particularly true with regard to M.E. M.E. patients must be treated based only on scientifically legitimate studies involving a 100% M.E. patient population.
To be a voice for those suffering from M.E. who are facing mistreatment and abuse due to the false notion that M.E. is the same thing as ‘CFS’ and is a trivial illness or a mental illness characterised by ‘fatigue.’
Reason for Aim 7:
Many patients with M.E. are subjected to medical abuse, mistreatment from social services, lack of understanding from the general public and even ridicule, neglect and abuse from friends and family. M.E. patients are (with very few exceptions) not being served by the charities which are supposed to represent them. The vast majority of charities purporting to help M.E. patients worldwide, whatever their original aims, are now actively supporting the propaganda which harms M.E. patients.
To be a voice for all those patients misdiagnosed with ‘CFS’ who do not have M.E., but other illnesses including: cancer, fibromyalgia, various post-viral fatigue syndromes, athlete’s over-training syndrome, Lyme disease, Behcet’s disease, PTSD, depression and other mental illnesses, burnout, thyroid or adrenal diseases, various vitamin-deficiency diseases, and so on. To encourage each of these patients to reject their ‘CFS’ misdiagnosis and seek a correct diagnosis and appropriate treatment, finally.
Reason for Aim 8:
A diagnosis of ‘CFS’ can only ever be a misdiagnosis. Currently, many hundreds of thousands of patients with a vast array of different diseases are misdiagnosed with ‘CFS’ and this can cause significant and prolonged needless extra suffering and disability and can also lead to needless deaths.
There are many ‘CFS’ advocacy groups out there, but most tell patients that their ‘CFS is real’ and that ‘CFS is not a mental illness’ and that they must join the fight to legitimise ‘CFS’ and so on. This may placate patients in the short term, and make them feel as if they are being helped, but it misses the point entirely and is counter-productive. This approach keeps patients ignorant of the basic information that can improve their situation and their medical outcome.
Defending ‘CFS’ only aids vested interest groups; patients will benefit when ‘CFS’ is abandoned. Every ‘CFS’ misdiagnosed patient deserves to know that ‘CFS’ does not exist and that it should never be considered the end point of diagnosis.
Some of the conditions commonly misdiagnosed as ‘CFS’ are very well defined and well-known illnesses and very treatable – but only once they have been correctly diagnosed. Some conditions are also very serious or can even be fatal if not correctly diagnosed and managed. Every patient deserves the best possible opportunity for appropriate treatment for their illness, and for recovery. This process must begin with a correct diagnosis if at all possible. A correct diagnosis is half the battle won.
To enlist the help of human rights groups, medical professionals and the quality media to help to achieve the above stated goals as is their obligation and duty. (A duty that has unfortunately been almost completely ignored for the last 20 years, with a few notable exceptions).
To obtain funding to pursue the aims described above.
For more information on all the issues briefly noted here, please see the HFME website.
The HFME would like to thank the following individuals for their significant contributions to the HFME website and HFME papers and/or helping to improve the HFME website:
The HFME would like to thank the following individuals for their services as translators, translating some of the HFME's papers into other languages:
The HFME would also like to thank all those who have contributed to this site over the years. This includes everyone who has signed the guestbook with an encouraging message, everyone who has sent us a case study or an account of CBT or GET and everyone who has sent feedback on the site, and constructive criticism by email. Every email or message has helped in some way.
Perhaps most of all the HFME would like very much to thank Dr Elizabeth Dowsett, the late Dr Melvin Ramsay, the late Dr John Richardson and, most especially, Dr Byron Hyde. It is very hard to imagine how anyone could put together any sort of overview of the facts of M.E. without the valuable contributions of these individuals. All M.E. patients will be forever in your debt for all your work on M.E. and M.E. advocacy. These individuals are real heroes, in the truest sense of the word. We would like to say ‘THANK YOU all, most sincerely.’
Thank you also to all those doctors who have added some useful information to what we know about M.E. including Dr Paul Cheney, Dr Arnold Peckerman, Dr John Chia and Dr A. Martin Lerner.
Thanks too to all our fellow M.E. advocates who have made valuable contributions by making some of the political facts of M.E. more accessible to us and to the general public. A big thank you to Professor Malcolm Hooper and Margaret Williams for such important and excellent papers as 'What is M.E.? What is CFS?' and 'The Mental Health Movement.'
Thanks from the HFME also go to dedicated M.E. advocates and authors such as Gurli Bagnall, Cesar Quintero, LK Woodruff, Lajla Mark, The Committee for Justice and Recognition of M.E., Dr John Greensmith, and others.
The HFME would also like to thank everyone who has helped to make others aware of the HFME and the work of the HFME. Every link made to our site (or recommendation of one of our books) helps get the facts out to more and more people, which is what it is all about.
The idea behind the website is to try to create a guide to M.E. which doesn't just mindlessly repeat the same inaccurate myths and propaganda again and again and instead focuses on the available facts:
The problem is not a lack of scientific evidence, but that the mountain of evidence which exists is continually ignored by many of those in positions of power who are abusing that power to further their own vested interests; helped immeasurably by the creation of the bogus disease category of 'CFS.'
This pretence of ignorance (particularly by government) has had devastating consequences for people with M.E. and has also meant that the number of M.E. sufferers continues to rise unabated. The general public worldwide - including sufferers themselves - have been lied to repeatedly about the reality of Myalgic Encephalomyelitis.
The decades of systemic abuse and neglect of the million or more people with M.E. worldwide has to stop. M.E. and 'CFS' are not the same. Knowledge is power.
If you would like to email any of the papers or other site features, to family, friends, doctors or fellow sufferers please feel free to do so.
If you would like to print out any of the information on this site – please do! Print as many copies as you like and please redistribute them freely.
If you would like to add a link to any part of the site to your own site - please don't hesitate to do so. You may link to as many individual pages as you like.
If you would like to put one of the HFME’s essays on your own site - please read the section below for conditions.
If you'd like to publish any of the HFME’s papers or site features, (in M.E. newsletters etc.) please inform Jodi Bassett beforehand.
Please note that if articles or papers are reproduced the HFME do ask that they are not edited in any way and that they are reproduced in their entirety, with the website link and author and copyright attributions left intact.
If you have any further questions please don't hesitate to send an email to Jodi Bassett.
New reprinting rules for website owners
The reprinting rules have changed for some of the papers on the site (under certain conditions) for those with small or specialist M.E. websites or other websites on different topics which also contain a small extra section on M.E.
Like-minded M.E. (or other) website owners may now - if they wish - use one of theä papers listed below as their site's 'What is M.E.?' page (and format it to match the rest of the site etc.) instead of writing their own information.
Theä papers this applies to are:
If you have any questions, please don't hesitate to ask.
Note that the following conditions apply when using these appers on your site:
This site is not funded in any way by any commercial interests, this site is funded entirely by Jodi Bassett, and other members of the HFME committee.
The HFME are committed to protecting your privacy while interacting with this website.
Cookie programs have not been installed on this site.
Anonymous information is collected about visitors to the site, and how many visitors have viewed each page and which documents have been most downloaded and so on. This data helps the HFME to make the site as useful as possible by letting us know which pages are the most popular.
Visitors who sign The Guestbook and leave positive comments will be automatically subscribed to the HFME e-Newsletter (if they have not previously subscribed). Newsletter recipients may opt out of recieving the newsletter at any time by simply replying to the email.
Please consult your own health-care provider regarding any medical issues relating to the diagnosis or treatment of any medical condition.