See what's been added to the site etc. since your last visit. (Don't forget to refresh the page if this isn't your first visit to this page and your computer doesn't do so automatically.)
If you'd prefer 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.
(If the above link does not work on your computer, just sign The HFME Guestbook instead. Make sure you mention that you would like to receive the e-Newsletter, and that you leave your email address, when you sign.)
The HFME e-Newsletter will then be sent to you each month. Newsletters are in plain text format and you can unsubscribe from the list at any time. (Note that the e-Newsletter will often contain far more detail, and more projects and comments, than what is given on this page.)
A new paper is available: M.E.: The shocking disease
Just explaining the basic facts of M.E.falls far short of really getting across what a hell on earth M.E. really is. In thinking about M.E. and all of the terrible things that are happening so unfairly to so many wonderful innocent people year after year, and how extremely severe a disease it can be physically, many of us keep coming back to one word. Shocking. Above all else, M.E. is a shocking disease.
This important new HFME paper explains why M.E. is THE shocking disease.
(Note that this paper is also feeatured as a special guest blog on the Planet Thrive website.)
A new paper is available: XMRV, 'CFS' and M.E. by Sarah Shenk
There has been much media publicity lately over a small research study that claims to have made a connection between “CFS,” or "ME/CFS", and a retrovirus. While many are touting this as a huge medical breakthrough, or even claiming that 'our battle is over' there is a group of doctors, scientists, patients and advocates who question why this research is being said to apply to M.E., when the patients studied merely qualified for a 'CFS' misdiagnosis and who view this information and the claims made about it with tempered enthusiasm or even significant concern and worry. Please read this brief paper to find out WHY. This page also includes a new short paper entitled: Understanding M.E. and CFS - A Brief History.
A new paper is available: So you know someone with M.E.? Part 2: Tips on coping for friends, partners and family members.
If someone close to you has M.E. and you'd like some tips on how to cope and what this might mean for you, and perhaps also your family, then this paper is for you.
This paper was written by Lajla Mark and Jodi Bassett and is available to be downloaded in a 1-page folded leaflet format as well as the usual Word and PDF formats.
A new book reviews section is available: Useful books on health, nutrition, supplements and vitamins
New book reviews featured in this section include:
The Tips for coping emotionally with M.E. paper has been updated and now includes a new piece called 'Reality, distraction, resting and M.E.'
The Comments on the 'Lightning Process' scam and other related scams aimed at M.E. patients page has been updated and now includes a new section entitled: The petition to try to stop Esther Rantzen commenting publicly on M.E. or 'CFS'
The Anaesthesia and Myalgic Encephalomyelitis paper has been updated.
Brief notes have been added about how problematic adrenaline-containing anaesthesia in dentistry can be safely replaced with adrenaline and preservative free Prilocaine HCL, and that high-dose vitamin C may be of use before and after surgery (although vitamin C should be avoided the day of surgery).
New Russian and Danish translations of HFME paper are available on the Translations page, thanks to the hard work of Tatiana Coronado-Briceno and Joan Steen, respectively.
The Case studies page has been updated and now includes a number of new case studies.
M.E. patients that have been through pregnancy and childbirth are invited to submit any information they have, any advice or cautions, that may be helpful for those newly pregnant. This information will be collated on a new 'Pregnancy and M.E.' page on the HFME site later this year.
Get a sneak peek at the semi-final draft of a new HFME paper entitled: 'A quick start guide to treating and improving M.E. with aggressive rest therapy, diet, toxic chemical avoidance, medications, supplements and vitamins' by downloading the 'Treating M.E.' paper:
As always M.E. patients and experts are invited to submit comments and constructive criticism. Links:
http://www.hfme.org/Word/Treating_ME_The_Basics.doc
http://www.hfme.org/PDF/Treating_ME_The_Basics.pdf
http://www.hfme.org/LT/LT_Treating_ME_The_Basics.pdf
A new paper is available: High-dose vitamin C and M.E.
What are the benefits of high-dose vitamin C? What is the appropriate dose, and form, of vitamin C for M.E.? How safe is high-dose vitamin C and how well tolerated in M.E.? How does one titrate vitamin C to bowel tolerance?
A new paper is available: Why care about M.E.?
If you aren't personally affected as yet, why should you care about Myalgic Encephalomyelitis and want to help patients achieve the same basic rights as those with similar neurological diseases such as Multiple Sclerosis? Why should you care about whether or not the fictional disease category of ‘CFS’ is abandoned?
The Tips for coping emotionally with M.E. paper has been updated.
Two new hummingbird prints/print sets by Jodi Bassett are available, with 30 to 50% of the purchase price being donated twoards M.E. advocacy via the HFME and the Nightingale Research Foundation. See The Hummingbird Gallery or the Art Gallery Store on the AHG website for details.
The HFME website (formerly known as HGME) turns 5 this month.
The comprehensive M.E. symptom list, What is M.E.? - Summary, and A one-page summary of the facts of M.E. have now been translated into Danish. See: Translations
The Treating M.E. - The Basics paper has been updated.
A new table of contents page has been added to the first page of this document for easier navigation and selective printing.
New information has been included about ubiquinol, resetting the sleep/wake cycle, high dose probiotics, treating seizures, medicinal marijuana/cannabis, digestive enzymes, salt, and vitamins C, D and B12.
The free Word medication budget chart linked to in this document has also been comprehensively updated.
The Case studies page has been updated.
The Research and articles section has now been fully transferred to the new HFME website.
Two new topics have been added to the Groups comments page.
The HFME site now features a new 'connecting with HFME online' section
This page includes the HFME site map, site search tool and now also a new 'connecting with HFME online' section which lists and provides basic details of all the different websites linked to HFME from the main HFME site including our Facebook site, YouTube site, Cafepress site, our Yahoo groups and so on.
The Hummingbirds' Foundation for M.E. is setting up two new memorial pages. One for M.E. patients and one for all those patients misdiagnosed with 'CFS' who have diseases other than M.E.
It has been known for many decades that M.E. is a neurological disease which can be fatal. Dr Elizabeth Dowsett estimates the death rate for M.E. to be roughly 3%. There are deaths due to cardiac failure, brain death, tumours, and liver failure. All kinds of deaths. There are sudden deaths following exercise/overexertion, and deaths which occur after a long period of slowly worsening illness.
Dr. Dowsett explains that although these deaths are due to M.E., they are disassociated from it, and are almost never recorded in statistics as deaths from M.E.
Most deaths from M.E. occur without the fact ever being officially recorded or acknowledged. It is also true that only a very small number of M.E. deaths are given any sort of media attention. Deaths from M.E. are largely hidden from the public awareness, and the public continues to be told that M.E. is a trivial and short-term illness involving fatigue, which is also correctly referred to as 'CFS' and is of course never fatal.
The misdiagnosis of ‘CFS’ can also cause death.
Every diagnosis of 'CFS' is a misdiagnosis. Many hundreds of thousands of patients have been misdiagnosed with 'CFS' and so denied an appropriate diagnosis and treatment. For some of these patients, this lack of appropriate care can lead to death. For example, cancer patients are sometimes misdiagnosed with 'CFS' instead of being given the cancer diagnosis and treatments they need, or these treatments are given far too late to save the persons' life. This fact is also only very rarely discussed, and never in the mainstream media.
The ‘CFS’ scam, the cover-up of the facts of M.E. and the widespread abuse of M.E. patients are ruining countless lives, and are also causing many needless deaths. It is important that the M.E. community (and the formerly 'CFS' misdiagnosed community) does what it can to highlight these deaths, in order to stop the same thing happening to others and so to make these often avoidable tragic deaths count for something.
We would also like to pay tribute to those who have died, and to make sure these individuals are not forgotten. At the very least, not by us.
If you would like a friend or family member to be included in this memorial list, please see the HFME memorial lists page for contact details, and for further information.
The memorial lists, when finalised, will be made public along with a new paper looking at the topic of deaths from M.E.
A new paper is available: So you know someone with M.E.?
If you know someone with M.E. and want to know how to deal with it, and what you can do to help, then this paper is for you...and good on you!
(This is one of two papers on this site specifically written for the friends and family of M.E. patients. The second paper is entitled A million stories untold and it is highly recommended that you read this second paper along with the So you know someone with M.E.? paper.)
This paper is also available in a printable leaflet format, see the section below for details.
A small number of HFME papers are now available to be downloaded in a printable leaflet format, for easy redistribution.
Leaflet downloads available include:
For more information, and for links, see the Document Downloads page.
The Tips for coping emotionally with M.E. paper has been updated and now includes extra information on breathing exercises, relaxation exercises and meditation.
The Treating M.E. - The Basics paper has been updated.
It now includes extra information on the benefits of high-dose vitamin C, high-dose sublingual hydroxocobalamin vitamin B12, sun exposure and the importance of vitamin D, Ashwagandha, Piracetam, and the Chinese medicine Matrine.
The HFME site now features a site map page.
A public announcement about HFME was made this month:
A new international, uncompromising Myalgic Encephalomyelitis charity has been created.
The Hummingbirds' Foundation for M.E. (HFME) is a new international M.E. charity (founded by Jodi Bassett).
The HFME's mission statement:
"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."
As many of you know all too well, the situation facing M.E. patients continues to worsen.
We have almost no genuine M.E. advocacy groups left now. Most so-called advocacy groups are actually doing little more than making our abusers' jobs easier for them. It is so rare to read information purely about M.E. any more, that doesn't mix in a large amount of 'CFS' misinformation and actually promote the fictional and financially motivated concept of 'CFS.' (One of the largest causes of our problem!) Tragically, almost everyone has fallen for the fatally flawed 'ME/CFS' and subgroups of 'CFS' or 'ME/CFS' nonsense.
No matter how you look at it, it seems that it will be impossible for us to make any progress with M.E. advocacy without some more uncompromising advocacy groups.
(It would also help immensely if patients STOPPED supporting all the sham ‘CFS,’ ‘CFIDS’ and ‘ME/CFS’ etc. groups out there that have played such a huge part in us making no progress at all after so many years, and which continue to block genuine advocacy efforts. It is far more than just a failure to lead or well-meaning political naivety. The vested interest groups could never have gotten away with as much as they have without these sham advocacy groups, and without patients’ inexplicable support of these sham groups.)
The HFME is not only a genuine and uncompromising voice for M.E. patients but also speaks up on behalf of all those patients misdiagnosed with 'CFS' who have other diseases, and who also deserve a chance at correct diagnosis and appropriate treatment finally.
M.E. patients and patients misdiagnosed with 'CFS' who have non-M.E. diseases need to, and can, work together to achieve common goals. Fighting for the bogus disease category of 'CFS' to be abandoned benefits all patient groups.
The HFME acts in response to facts, logic and ethics. There is no other agenda than helping all the patient groups involved to finally be treated justly and in a scientific and ethical manner, and accorded the same basic human rights those with many other diseases take for granted.
I hope you will want to be a part of this new initiative. Most involved are very ill and disabled, and so we need a large amount of people to become involved and to each contribute the small amount of time and effort that they can spare, for this to work.
Even though many of us are very ill, we can move mountains if we each contribute what little we can and work together with integrity and intelligence. (Friends and family members of patients etc. are also of course welcome to participate too.)
Please email me (Jodi Bassett) for details.
Paid membership in HFME is not yet available, but will be available soon. The organisation of the foundation is still in the early stages, although the HFME website is now complete.
To view the new Hummingbirds’ Foundation for M.E. website, or to learn more about the HFME, please go to: www.hfme.org
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What are the aims of the HFME?
*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.
*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.
*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.
*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.
*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.’
*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.
*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).
This is a summary of the full text. To see the full list of aims, and a discussion of the reason for each aim, please click here.
A new paper is available: Treating M.E.: Food as medicine
Diet is so important in M.E. It has such a strong effect on the immune system, on hormones, on gut health and the level of neurological and cognitive problems and the body's ability to detoxify, and so on. The right diet can increase or reduce cancer risk. Treating the gut problems of M.E. is also one of the first steps in treating M.E. itself and cannot be ignored. The health of the gut affects neurological health to a significant degree. Diet can also increase or reduce inflammation and have positive or negative effects on many different hormones and neurotransmitters. Food affects the body in the same powerful ways as do prescription drugs, and so must be considered with the same amount of respect. Food is not merely fuel, it is MEDICINE.
An important new advocacy paper is available: The WHO ICD in relation to M.E. and ‘CFS’ by Lesley Ben
All major papers have now been transferred to the new site.
(Remaining to be transferred/updated are some parts of the research and articles section.)
Cost-price products featuring 'The Hummingbirds' Foundation for Myalgic Encephalomyelitis' logo, were made available via Cafepress.
The HFME site was established.
See the old HGME website's 'What's new' page.
