The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

August 2015

Severe M.E. patient from the Netherlands Ingeborg Geuijen has sadly passed away this month. Ingeborg was one of the very first people with M.E. I (Jodi Bassett) ever met and a huge inspiration for all the M.E. education and advocacy work I have done since then on HFME. Ingeborg was one of the most amazing people I have ever met, and also one of the most horribly, horrifically ill. She will be sadly missed.

A tribute page to Inge is in the works but is not yet completed. 

June 2015

The HFME team continues to be as committed as ever to M.E. advocacy work and M.E. education. However, we are currently taking a (much needed!) break from writing new pieces to put up on our website. 

The HFME website currently contains papers and webpages on many different topics related to M.E. and we hope you will continue to access them and to share them widely. This information needs to become far more widely known. 

Thank you for helping us in our mission to get the facts out there.

Best wishes everyone!

September 2013

A new paper is available: Invisible logic: The mistreatment of M.E. patients does not occur because M.E. is supposedly ‘an invisible illness’

 

This paper explains why M.E. is not an 'invisible' disease and why this false claim harms legitimate M.E. advocacy.

August 2013

Changes to the HFME website toolbar

 

The HFME toolbar is back on-site!

 

The technical issue (caused by a company suddenly changing services offered, with no warning) with the toolbar not showing up on the bottom of the HFME site for the last month has now been resolved. The new toolbar offers quick links for Facebook sharing, Twitter sharing, email sharing, YouTube, translating pages and much more.

 

Apologies for the inconvenience but service is now back and better than before! To check out the new features just look at the bottom of any HFME webpage.

May 2013

The photo/art book Super Cute, Vicious, Dreamy Cats by Jodi Bassett is now available in digital editions

This book contains a selection of oil paintings featuring cats by Australian artist and patient advocate Jodi Bassett.

Several self portraits and hummingbird egg paintings are also included.

This book also contains a small amount of information about the artist and about the neurological disease Myalgic Encephalomyelitis; with which the artist is currently severely afflicted.

Please see the HFME books page for details and links. The digital editions are $2.95 (USD).

December 2012

The HFME M.E. ability scale has been updated and improved.

The third scale in the set now lists ratings out of 10 instead of giving a rating given as a percentage, making the scales more simple to use.

October 2012

A new website has been launched!: Health, Healing & Hummingbirds

 

I am so happy to announce the launch a new website this month - Health, Healing & Hummingbirds.

  

Lately I have been reading as much as I can about health and healing. Some of the information out there is genuinely amazing. So much more impressive and compelling than I had been led to expect.  But finding the little nuggets of gold amongst all the huge piles of worthless junk takes time. Time that many ill people just don’t have.

 

Health, Healing & Hummingbirds (HHH) aims to get a summary of the cutting-edge information on health I’ve learned out to people in the earliest stages of their disease. Where it can do the most good.

 

HHH is about healing. Finding and treating the causes of disease and giving the body the resources it needs to heal itself – rather than just endlessly chasing and suppressing symptoms.

 

This is not a website about ‘alternative’ medicine as such, or one which supports all ‘natural’ therapies. Modern drug-based medicine is hugely problematic but the vast majority of what is promoted as 'alternative' medicine (for want of a better term) is also unscientific and unhelpful. I don’t think it makes logical sense to support most ‘mainsteam’ drug-based medical practitioners or most ‘alternative’ practitioners. The important distinction is between medicine which works and medicine which doesn’t, not some artificial line between so-called ‘mainstream’ and ‘alternative’ medicine.

 

The body has an amazing capacity to heal. Making sure your body has all the materials it needs to run properly is an essential part of any program aimed at reclaiming lost health. Doing otherwise is like asking someone to build you a house and only giving them trailer-loads of doorknobs to do it with. It just can’t be done.

 

We are brainwashed to always be excited about and focused on the newest and sexiest and most exotic new drugs (and other treatments) to cure us. But most of this is just marketing hype. The good news is that it is the deeply boring and ‘unsexy’ stuff like making sure your body has enough of all the major vitamins and minerals it needs and a low toxic load which really gets the big results! This is great news for anyone that is ill. No matter what disease you have you have far more power to improve your health than you have been led to believe.

 

Using the best information from experts in their fields, and the most appropriate tools and modern tests available including using many cutting-edge testing and other technologies, to find and treat the causes of disease gives the best outcomes.

 

HHH provides information on health and healing for the moderately or severely ill – summarised from 100 of the world’s best cutting-edge health books.

 

Having a trained doctor and nutritional expert to administer testing and help you on your way is ideal and highly recommended but several parts of the program you can safely do yourself, if you are willing to read and learn a little bit. What better time to start than now?

 

That is what HHH is all about in a nutshell. I hope you find this new website useful! Please click on the link to visit Health, Healing & Hummingbirds.

 

 


Changes to the HFME website

 

The information on diet, nutrition and disease treatment on HFME has been moved to a new website, re-edited and expanded.

  

Only part of the information on HHH is M.E. specific. Most of it is written in a more general way, as the topic of health and healing is best dealt with more broadly, although the site does aim to educate visitors about the basics of M.E. as well in a subtle way.

 

For people with M.E. this new site will make accessing treatment information much easier. The site is much smaller and easier to navigate. For people that don’t have M.E. I’m hoping they’ll come away from the site having learned something useful about health and healing, but also having picked up a few facts about M.E. along the way as well.

 

Nothing else on HFME has changed and HFME still has all the same papers and sections on M.E. politics, history, medical facts, management, case studies, pathology, symptomatology and other detailed descriptions, diagnosis, activism and advocacy, and everything else as before.

 


A new Italian HFME translation

'The ‘CFS’ and M.E. comparison chart' on the HFME site has been translated into Italian by Antonia Frigo.

Thank you Antonia for all your hard work!

September 2012

A Dutch art and M.E. book translation is now available!

My book 'Super Cute, Vicious, Dreamy Cats' which includes images of paintings as well as a small amount of information about me and M.E. is now available in a Dutch edition.

The title is 'Schattige, ondeugende, dromerige katten'

My lovely and talented Dutch friend Els Pieters did all the translating.

You can read Els' (Dutch) press release for the book here. The Lulu page is here. Three cheers for you Els and all your hard work!

July 2012

The HFME site has been redesigned and improved

 

A new header has been added to the site and some colours on the site have been changed to look better and to be more soothing to the eye.

 

HFME videos have been embedded on many pages for those that that prefer non-written information.

 

The navbar on the left of the page has also been completely reordered and will now hopefully be even easier to use and navigate with.

 


New HFME Cafepress products and designs are available

 

New items and designs are up in the HFME Cafepress shop this month. There is lots more colour and...more hummingbirds. What more could

anyone possibly desire!

 


Health book reviews are now onsite

 

All the past few months new health book reviews posted on Amazon have now been added to the HFME website on the book reviews pages.

June 2012

Five new information and advocacy videos are available on HFME's YouTube channel this month!

1. What is M.E.? (1 page version

2. What causes M.E.?

3. The importance of rest in M.E.

4. Is M.E. stable?

5. Why severe M.E. relapses are horrifying


An excellent new article on M.E. titled 'Misdiagnosing M.E.' has been published in Mindfood magazine, authored by Rachel Eldred.

The article includes an interview with me (Jodi Bassett), plus world leading M.E. expert Dr Byron Hyde. The article also discusses the illness and struggles of Australian M.E. patient Josie.

Journalist Rachel Eldred is to be congratulated for producing such an intelligent and fact-based doscussion of some ofthe issues facing M.E. patients and involving correct diagnosis of M.E. and also the misdiagnosis or non-diagnosis of 'CFS' and why this wastebasket diagnosis is not helpful to patients.

The article can also be viewed on this website.


The M.E. symptom list: Summary and The comprehensive M.E. symptom list papers have been updated and streamlined.

The list of common M.E. symptoms featured in the summary paper has been put into bullet points, instead of a paragraph style, for easier reading. Symptoms have also been sorted into categories including neurological, cardiac and cardiovascular, muscular, cognitive and other symptoms and signs.

This new list has also been added to the start of the full-length paper, and now forms an easy to read overview of the main topic and list which follows it.


The Testing for M.E.: Summary and Testing for M.E. papers have been updated and streamlined.

The summary paper has been shortened from three pages long to two, and the full-length paper now includes an overview of the most important tests at the beginning, plus a shorter introduction and conclusion section.


Memorial for Dr Dowsett: 1920- 2012

A genuine hero for M.E. patients.

 

May 2012

A new paper is available: 'CFS' and M.E. comparison chart.

 

This chart illustrates the many differences between CFS and M.E. 

 

As this chart shows, despite what many groups claim, CFS and M.E. are not the same.

 

Please share and link to this chart widely.

 


Two new videos are available on HFME's YouTube channel

1. The 'ME/CFS' concept is unhelpful

''ME/CFS' just doesn't make sense. For every problem 'ME/CFS' supposedly solves, it creates many more - for ALL patient groups involved, not just M.E. patients.

It is time that we fought for the abandonment of the disease category of 'CFS' and the recognition of authentic Myalgic Encephalomyelitis in name, definition and World Health Organisation classification, without compromise.

 

2. The misdiagnosis of 'CFS'

None of the definitions of CFS defines M.E., so what do they define? What does a diagnosis of CFS actually mean? Why is every diagnosis of CFS merely a MISdiagnosis?


Some new HFME M.E. advocacy and awareness images are available
These images are designed to be shared and used as profile images on Facebook, primaily.
See the HFME Facebook page for details.

April 2012

The HFME site has a new handy taskbar feature

This new taskbar comes up at the bottom of the screen and stays there, whenever you view a page from the HFME site.

The taskbar lets you 'like' a page on Facebook, with one click as well as the Google and Twitter equivalents. You can also send each page to Facebook, Google Plus or Twitter with one click - or an email recipient. Just click on the 'share' button. There is also a site search link. The taskbar also features a list of 'Quick links' which is a link to 6 or so of the most commonly visited, used and major HFME pages.

The taskbar also features a list of 'Other HFME/JB sites' a link to all the other HFME sites and my personal sites including my art site, the FB HFME page, plus my Amazon and Lulu profiles. It is much easier to find these sites now, as they are all listed together on the taskbar. The taskbar also has a 'You Tube' button on it which is linked to the HFME YouTube channel and lets you easily view or preview all the HFME videos. This will hopefully make far more site visitors aware that we have a YouTube channel, which is helpful. Lastly the taskbar features a 'translate' button, which may or may not be helpful to some extent to the multi-lingual.

The taskbar will not come up on the mobile site, only the standard one. If you find it annoying, it can easily be minimised and hidden with a click. 



The HFME site has a new live site-search feature and two-click newsletter subscription feature on the navbar



Jodi Bassett's iHerb reviewerer profile page is now live

These reviews should not be relied upon as a sole source of information as they are very brief and each review omits many important cautions and other vital information included far more fully in the HFME treatment webpages and books.


Many new health book reviews by Jodi Bassett are available to be viewed on the Amazon or Goodreads websites. These reviews will be added to the HFME site later on in the year.


A note about 'CFS' awareness day May 12th

The day many of us view with a good serving of dread will soon be upon us. May 12th and 'CFS' awareness day will soon be here and the airwaves bringing the public an even bigger than usual onslaught of misinformation about the reality of 'CFS' and which wrongly conflates M.E. with 'CFS' or 'ME/CFS.'

This can be very stressful for those with M.E. and can lead to friends and family members giving inappropriate advice, withdrawing support or even being abusive.

To help minimise the negative effect of such 'advocacy' campaigns we suggest:

1. Printing out the 2 page 'What is M.E.?' paper from HFME to give to family members in order to explain to them that despite what the media may have recently told them that you do not have 'CFS' and M.E.is not 'CFS' or 'ME/CFS' and exercise or psychological therapies are dangerous for you to attempt and will not cure or aid your condition.

2. Doing what you can to promote some real advocacy for all those patients misdiagnosed with 'CFS' by posting links to legitimate 'CFS' advocacy papers. Papers which point out that 'CFS' is always a misdiagnosis, that patients need a correct diagnosis and are not best served by keeping this misdiagnosis and that most patients misdiagnosed with 'CFS' do not have M.E. nor any other neurological disease. For example, these two papers on the HFME site:

*
http://www.hfme.org/misdiagnosis.htm
* http://www.hfme.org/whatisme.htm

March 2012

The first photo/art book is now available: Super Cute, Vicious, Dreamy Cats by Jodi Bassett

This book contains a selection of oil paintings featuring cats by Australian artist and patient advocate Jodi Bassett.

Several self portraits and hummingbird egg paintings are also included.

This book also contains a small amount of information about the artist and about the neurological disease Myalgic Encephalomyelitis; with which the artist is currently severely afflicted.

 

February 2012

The Assisting the M.E. patient in managing relapses and adrenaline surges page has been updated.

It now includes two insightful new quotes from patients plus a list of references instead of just a link to a page of references.


A new article on M.E. has been published in Australia: Jodi Works Through Adversity, Roleystone Courier, February 2012, article by Linda Moore.

This page also now includes the full text of all three CFTMEP articles.

"The book outlines her story and how thousands of patients across Australia and the world undergo enormous suffering with M.E. Jodi describes how people's lives can be made worse by medical misdiagnosis which ...can leave them with suffering and a feeling of desperation. M.E. carries with it a social stigma and medical ignorance as despite patients suffering from a range of abnormalities which may be tested for, and the disease sometimes being fatal, they may be accused of suffering from an 'imaginary illness' as M.E. is often incorrectly said to be the same thing as 'Chronic Fatigue Syndrome.' "

January 2012

The new customised HFME mobile phone site design is now live

The new customised site design made specifically for mobile devices will connect automatically anytime you view the HFME website on a compatible device such a a mobile phone (replacing the garish and too-bright colours of the previous default edition). The AHG website custom mobile phone site design is also now live.

Click here to preview the HFME site in mobile format and click here to preview the AHG site.


A new downloadable letter is available: M.E. patient's family and friends letter.

This letter is designed to be given to the friends or family members of M.E. patients. It explains why the person with M.E. may often have to cancel or modify planned get-togethers and that this is not something done lightly and has nothing to do with mere tiredness.


The 'Caring for the M.E. Patient' book is now available in paperback format on Amazon.com as well as on Lulu.com.


A new booklet is available: What is M.E.?

What is M.E.?' by Jodi Bassett contains essential information on the neurological disease M.E. sourced from the world’s leading M.E. experts - in the form of a concise 70 page booklet.

The booklet includes a foreword by international M.E. expert Dr Byron Hyde.

This book clearly explains the facts of M.E., the problems faced by M.E. patients and why M.E. is not 'CFS.'

To read the contents list for this book please use the 'preview' feature on the Lulu website.

Note that this is a summarised 70 page booklet and not the full-length and more in-depth book 'Caring for the M.E. Patient.' This booklet does not contain the specific advice for carers or friends and family members of patients, nor the practical advice section and forms for patients included in the  'Caring for the M.E. Patient' book.

The 'Caring for the M.E. Patient' book is highly recommended for carers, close friends and family members and M.E. patients.

This lower-priced and summarised booklet is designed for larger-scale distribution to friends, family, doctors, lawyers, journalists and others.

See the HFME Books page for details and links.

The booklet currently only sells on Lulu.com but will be made available on Amazon.com around March or April 2012.


The outbreaks (and infectious nature) of M.E. page has been updated.

December 2011

A new page is available: Misdiagnosis letters.

This page contains two misdiagnosis letters. No matter which disease one has, rejecting the misdiagnosis of 'CFS' has benefits for our cause in the long term and also immediate benefits for the individual patient in the short term. Every diagnosis of 'CFS' is a MISdiagnosis.

Letter one: A misdiagnosis letter for M.E. patients This letter is designed to be used by M.E. patients that have been given a misdiagnosis of CFS. It informs family members that the person has M.E. and not 'CFS.' This letter is designed to be used by patients that have M.E. and feel they would benefit from letting those around them know that they do not have severe fatigue/'CFS' but are too ill to work out how to word  their own letter.  It is in no way suggested or recommended that all patients (mis)diagnosed with 'CFS' should use this letter. The vast majority of those diagnosed with 'CFS' do not have M.E.

Letter two: A misdiagnosis letter for 'CFS' misdiagnosed (non-M.E.) patients This letter can be used by those who do not yet have a correct diagnosis, as well as by those who do. Rejecting your 'CFS' misdiagnosis is so important for your health and wellbeing and it is also important to let your friends and family know of this change. This letter is designed to be used by every patient given a diagnosis of CFS (that does not have M.E.)

The Misdiagnosis letter for M.E. patients is included in the Caring for the M.E. Patient book.


The following papers have been edited and updated:

The following leaflet downloads have also been edited and updated:

  • A one-page summary of the facts of M.E.
  • Hummingbirds
  • So you know someone with M.E.
  • So you know someone with M.E. - Part 2


The Document downloads page has been updated.


The Information guides page has been updated.


All of the hints and tips for living with M.E. papers have been combined into one single download.

For links to this new document see the Practical tips for living with M.E. page.


Articles on the new HFME book Caring for the M.E. patient

Articles on the new book have appeared in a small number of Australian publications.

The excellent article in the Comment News is featured below, or can be viewed by clicking on this link.

Click here to view the article in the Valley Reporter. (Both papers are print-only and not available online unfortunately, so have been scanned).

All assistance with getting media attention for the book around the world is appreciated, please send us your ideas!

November 2011

The Daya photos are now online

After doing a radio interview about M.E. a few years back, I was contacted by a very kind Australian man named Daya. He had very positive things to say about my interview, and said it had really affected him, listening to it. He also bought one of my hummingbird paintings. After a bit more chatting Daya mentioned that he would be going to the Burning Man festival in the US soon, and that he would like to send me some pictures from the festival - personalised ones, where festival goers would write me a message on a hummingbird decorated board and then have their photo taken with it. Not only did Daya send me these amazing photos but he sent each one individually, in a beautiful hand painted envelope! I got a new one every few days for ages...and years later, I still do!

For years I have wanted to put all my Burning Man festival pics from Daya online, and now I finally have thanks to a new very quick to use Photo Album and Slideshow feature that I have put on my site! Some are addressed to me, some to some of my M.E. patients friends and others to the M.E. community generally.

I hope you find them uplifting and they give you renewed faith in the kindness of people, as they do for me.

A second photo album/slideshow is also available featuring an updated collection of self portraits and hummingbird artworks.


A new paper is available: Biochemical individuality and disease treatment.  

Biochemical individuality is the concept that the nutritional and chemical make-up of each person is unique and that dietary and other needs therefore vary from person to person. People have unique biochemical profiles based upon their own genetic structure, nutrition, and environment. Some of these variables can also change over time. Dr. Williams was the first to recognize all humans differ biochemically from others, and to recognize that nutritional status can influence the expression of genetic characteristics.

October 2011

The free 'Treating M.E. - The Basics' download/eBook has been completely reformatted and updated.

This is a referenced 380 page plus guide to the basics of M.E. treatment. It includes information on the importance of rest, on diet and nutrition and also on detoxification and supplements.

If you read this paper in Word format, make sure to enable the ‘Document map’ in your viewing options, so that you can navigate between different papers in this document easily and with a single click. You can also jump to certain papers by clicking on the links in the Table of Contents list if you are viewing this document in Word or Open Office.

See the HFME books page for Word or PDF download links.


A new Dr Hyde paper is available!

M.E. Definition Booklet, September 2011, by Dr Byron Hyde

This document is an excellent and timely antidote to the scientifically unsupportable ICC - the latest unhelpful CFS redefinition being endlessly promoted by 'ME/CFS' advocates - and so
is highly recommended by HFME.

Quotes:

'At the first meeting on the 27th of October 2005, the Chairman
of the Joint Committee, Dr Ian Gibson, asked me to prepare a
report and definition that might assist the committee in its further
deliberations. The following are my original recommendation.
Dr Bruce Carruthers, who chaired the 2003 Canadian Clinical
Case Definition for M.E./CFS, was also present when I gave this
definition. I strongly disagreed with Dr Caruthers in the merging
the definitions of M.E. and CFS since on the basis of the physical
total body assessment of both M.E. and CFS patients; these two
names represent two entirely different spectrums of illnesses.
The present 2011 definition is confined to the defining of Myalgic
Encephalomyelitis (M.E.). The term CFS is mentioned from time
to time to clarify differences.

It is increasingly obvious that too much importance was being
placed upon the definitions of Chronic Fatigue Syndrome
(CFS), and not enough upon the actual disease, Myalgic
Encephalomyelitis (M.E.). These two illness spectrums are not
the same and should not be considered to be the same. Nor is
there any doubt in my mind that the various definitions of CFS
actively impede physicians’ ability to make a rapid and rational
diagnosis as well as a scientific confirmation of any testable
illness. Such is not true of M.E. where a rapid and rational
diagnosis can be made that can be confirmed by laboratory and
other technological testing.'

'In my 27-year investigation of M.E. and CFS patients, I can
state with clarity that there is less psychiatric disease among
M.E. or CFS patients than in the general public.'

'Garbage Bag Disease: Unfortunately, many physicians appear to be
using CFS as a convenient garbage bag disease, simply telling patients
whom they have no time to investigate, “Oh, you have Chronic Fatigue
Syndrome”. It is most unfortunate that the Americans, who have now
promoted the idea that CFS is the same as M.E., have only compounded
the disaster. Due to this garbage bag phenomena mentality many CFS
patients are never properly investigated for serious disease and most
CFS patients have significant and often times treatable pathologies.'

See the Dr Hyde HFME page for more links and information.

September 2011

The first HFME book is available!

This book provides essential information for anyone who knows, loves or provides care for someone with M.E. - sourced from the world's leading M.E. experts. The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by one of the world's leading M.E. experts, Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E.  I recommend her book to all and wish it every best success."

From the back cover:

For friends, family and partners: Your friend or family member may be just as ill and disabled as someone with M.S., yet have almost no appropriate social support at all. They may also be dealing with serious medical neglect or even overt abuse. This happens due to the deliberate, financially and politically motivated confusion between the distinct and measurable neurological disease M.E. and the vague fatigue-based wastebasket diagnosis of 'CFS'. These are two entirely different entities. Find out what is really going on and why.

Learning the facts is not time-consuming or complicated, and may improve both the patient's quality of life, and your relationship with them. You can help the person in your life that has M.E. Supporting your ill friend or family member more fully by being aware of the basic facts of M.E. could make all the difference in the world to them. This book shows you how.

For medical professionals: Patients with M.E. have some care needs which are common to a variety of other diseases, and others that are unique and with which hospital staff, doctors or carers may be wholly unfamiliar. If you are providing care for someone with M.E., you will find knowledge of some of the basic M.E. facts vital in order to avoid additional unnecessary suffering and disability.

Taking a small amount of time to learn the facts about the disease can make an enormous difference to the M.E. patient's quality of life and prognosis. It could even be life-saving. Providing appropriate care and support for the M.E. patient could make all the difference in the world to them. This book shows you how.

Click here for purchasing and other information.



The HFME press release for the first HFME book on M.E.:

The Suffering of Hidden Disease: A New Book to Help Patients, Families and Doctors

'This month sees the release of a book which discusses the enormous suffering of thousands of patients in Australia and many more worldwide. The book describes how people's lives are made worse by medical ignorance and abuse which leaves them with lives of quiet desperation and immense suffering.'


A new paper is available: Tips for M.E. patients that are parents

This new paper by Tatiana Coronado-Briceno and Caroline Gilliford  offers tips for parents and also for carers looking after M.E. patients that have children.

M.E. is an overwhelming disease to have to cope with. M.E. patients that have small children to care for also face many additional challenges. Life does not get more difficult than having severe M.E. and small children!

 


A new paper is available: Recipes for traditional & nutrient dense foods

 


A new paper is available: Pure water and M.E.


A new paper is available: Improving digestion and gut health in M.E.

This paper explains some of the basics of healing the gut in a very brief and easy to read format.

 


A new paper is available: Foods to eat, foods to avoid and foods to think about

 

A summarised and simplified version of the information given in some of the very best books on diet, nutrition and healing, for the benefit of time-poor patients.

August 2011

Memorial for Gurli Bagnall - New Zealand

Gurli Bagnall, a long-term M.E. advocate and patient, died on Friday August 17th 2011.

Gurli Bagnall was a tireless campaigner for M.E. patients, non-M.E. patients misdiagnosed as 'CFS' and patients that had been harmed by 'benzo' drugs. She was also a talented writer, novelist and jewellery designer. She will be much missed by her family and also by many of those patients and fellow advocates that she was in contact with and whose lives she touched.

To read some of Gurli's brilliant articles or view or contribute to the full Gurli Bagnall Memorial page, please click here.


A new paper is available: Tips on resting for M.E. patients

This paper is in two parts. Part 1 discusses the 80% rule, tips on avoiding overexertion and how to identify an adrenaline surge. Part 2 discusses some less well-known ways that we can reduce the total load on the body in order to feel less ill and to promote healing.


Facebook 'like' and 'share' links have now been added to all the major HFME webpages - making it easier than ever before to share information from the HFME site with fellow patients, advocates and others and to show your support for HFME!


Two new HFME e-books are available for free download:

  • What is M.E.?
  • The CBT and GET Database

    Visit the HFME books page for download links.


    The HFME Book reviews section has been completely updated.

    Many older book reviews have been updated and dozens of new reviews have been added.  


  • A new paper is available: My Personal Diet Manifesto.

    After writing so much about diet and reviewing so many diet books recently I'm often asked by patients what I eat each day. This short paper is my time-saving answer to this question! It also includes several book recommendations.

    July 2011

    A new paper is available: Fat, glorious fat!: The facts behind the saturated fat and cholesterol myths


    Coming soon: A review and critique of the new International Consensus Criteria

    These new criteria are in essence another version of the Canadian 'ME/CFS' criteria and they are at least as problematic, if not more so.

    These criteria are an attempt to repackage 'ME/CFS' under the M.E. name. The criteria are still very vague and very fatigue based and will give patients with a vast array of unrelated illnesses the misdiagnosis of 'ME/CFS' or even worse, M.E.

    But this is not a M.E. definition and the term M.E. is only scientifically correct when it is applied to an actual M.E. patient group and not to groups of miscellaneous 'fatigue' patients. A few M.E. facts thrown into the introduction does not an M.E. definition make. In fact these facts being incuded makes this definition even more harmful as they weld M.E. and 'CFS' together even more firmly in the mind of the uneducated reader.

    This is a redefinition of 'CFS' which at the same time claims to be abandoning the 'CFS' construct. But this is just a 'CFS' or 'ME/CFS' definition under a new name, a new name that it has no right at all to use.

    This new definition may well benefit the research interests of those involved in drafting it, and others in this same 'ME/CFS' or 'CFS' field, but it is not a step forward for any of the patient groups involved, including genuine M.E. patients.

    Despite all the positive spin surrounding this document, M.E. patients and all other patient groups involved will not serve their own interests for political change or for the creation of new meaningful research by supporting this unscientific redefinition.

    For more information on why 'CFS' being renamed as M.E. is a huge step backwards for patients, and not at all in our best interests please read the paper: 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’

    HFME will make the full text of this critique available as soon as is possible.

    May 2011

    A new book reviews page is available entitled Useful books on diet and nutrition

    This page contains many new book reviews of excellent books such as 'Good Calories, Bad Calories' and 'Deep Nutrition.'

    April 2011

    A new paper is available: Pregnancy and nutrition, and pregnancy and M.E

    This is a short summary paper on prenatal nutrition. It also includes some comments at the end appropriate for M.E. patients.


    A new paper is available: Coconut oil, lauric acid, monolaurin and M.E.  

    Information on why coconut oil and other coconut products are a good choice for health.


    A new paper is available: Liver, liver extracts, cod liver oil and M.E. 

    Health information on the role of all liver-related foods and products in M.E.


    A new paper is available: Healthy treats

    A collection of recipes that are dairy-free, soy-free, egg-free, wheat-free, grain-free, legume-free, nightshade-free and gluten-free but hopefully not taste-free!


    A new page is available on The dangers of the Fluoroquinolone antibiotic drugs (Cipro, Levaquin, Floxin, Tequin and others).

    This page is essential reading for anyone even considering taking any of these dangerous drugs.


    Two new Amazon M.E. lists are available.

     

    I (Jodi Bassett) have recently created two Amazon lists which feature some of my own favourite brands of supplements and vitamins, and also other items and tools of use to the M.E. patient. The main reasons for doing so were to make my own supplement purchasing tasks easier by having links to all the different products in one place, and also to save me time each week from finding the links to individual products each time someone asked me for one.

     

    Patients that have very little time online may wish to use these lists as a quick way to get a starting point for their own purchasing decisions, and so I am including links to them here for those that are interested. (I’ve had a lot of positive feedback for including such information.)

     

    List one: Excellent supplements list

    List two: Excellent tools and devices list

     

    (I receive no monies at all from anyone choosing to buy any supplement or device or tool from either of these lists, and highly recommend that patients shop around and find the best deals and products for them, and which best suit their own individual needs, at whichever other retailers they may prefer.)

    March 2011

    A new paper is available: Finding a good doctor when you have M.E.

    Sections include:

    • The difficulties in obtaining an accurate M.E. diagnosis are not due to a lack of appropriate science or tests
    • Testing for M.E. Plans A, B, C and D
    • Links to some of the most well-known doctors knowledgeable about M.E.
    • Educating a willing and intelligent doctor about correct M.E. diagnosis
    • Different doctors for diagnosis and for treatment - an important distinction!
    • Finding a doctor that can devise an individualised orthomolecular / holistic / environmental medicine program for you to help your body heal
    • Websites which can help you find a doctor specialising in orthomolecular / holistic / environmental medicine near you
    • Quick diagnosis is key with M.E.
    • Avoiding overexertion in the early stages of M.E. is absolutely ESSENTIAL
    • Calling all good doctors! Add your name to the future HFME international good doctor's list.


    A new paper is available: Testing for M.E.: Plan D

    Diagnostic tests for M.E. exist, as described in Testing for M.E. On a purely scientific level, we have more than enough information to diagnose patients with M.E. using objective tests and by taking detailed case notes and conducting a detailed physical exam etc. within just a few weeks of the onset of the disease. If the will and the funding were there, doctors could right now be given the information to diagnose all cases of suspected M.E.  Scientifically, it would be no more difficult to do this with M.E. than with other diseases such as Multiple Sclerosis or Lupus.

    A series of tests can confirm or eliminate a diagnosis of M.E.  If all tests are normal then a person does NOT have M.E. M.E. is no more difficult to diagnose through using a series of tests than MS. In fact, it has been suggested that diagnosis of M.E. is significantly less difficult and more reliable than that of MS. 

    The problem is not that tests for M.E. don’t exist.  They do, but doctors – and many patients – are unaware of this.  The information on testing is not generally known and accepted due to the nefarious influence of political and financial vested interest groups. There are overwhelming financial and political incentives for researchers to IGNORE the evidence on the diagnostic tests for M.E. in favour of the bogus and untestable ‘CFS’ (or ‘subgroups of ‘ME/CFS’) construct, and so on.  Thus doctors who gain their understanding of M.E. from such flawed research – as almost all do – wrongly believe that the disease cannot be tested for. 

    Despite the existence of these tests, the unfortunate reality is that many people who suspect they have M.E. do not have access to the appropriate tests or to doctors who are able to make a diagnosis.  This paper describes the ways in which patients seek a diagnosis in practice, and offers a ‘Plan D’ for patients who are forced to diagnose themselves.


    A new paper is available: Deep healing in M.E.: An order of attack!

    The paper A quick start guide to treating and improving M.E. with aggressive rest therapy, diet, toxic chemical avoidance, medications, supplements and vitamins looked at which treatments are the most important in M.E. This paper examines in what order all the different treatments and management techniques are best implemented. Fill-in charts are provided throughout so that patients can use this paper to track their own progress, if desired.


    A new paper is available: Toxin avoidance and M.E.

    Chemical sensitivities are common in Myalgic Encephalomyelitis and Multiple Sclerosis, and many other diseases. Symptoms provoked by chemical sensitivities can range from mild to very severe. Modifying your environment and changing the types of products you buy is essential if you have M.E., or any other disease causing chemical sensitivities or poor liver function. This paper lists some of the products to avoid and some of the best replacement products.


    A new short text is available: Some informal comments to 'ME/CFS' advocates on the PACE trial sham in the UK

    February 2011

    A new HFME discussion paper is available: Symptom-based management vs. deep healing in M.E.

     

    M.E.is a difficult disease to treat. The idea that you would try a lot of different treatments one by one, discarding those that make you feel more ill and continuing with those which decrease symptoms or disability, seems like a 'no brainer.'

    Unfortunately, due to something known as a 'healing reaction' the problem is not at all that simple. Some of the treatments which may have little or no effect or make you feel more ill at first may in fact be the best ones for you. It is also possible that some of the treatments which make you feel better very quickly are the ones that you should strictly avoid!


    A new HFME discussion paper is available: Recognising and managing healing reactions in M.E.

     

    How do you tell the difference between a healing reaction and an M.E. symptom or relapse? How do you tell the difference between a healing reaction and a bad reaction to the treatment? How can healing reactions be minimised?

     


    A new HFME discussion paper is available: What if vitamin/mineral/protocol 'x' didn't work for me?

     

    What constitutes a fair, reasonable or exhaustive trial of an essential nutrient? What factors might make a trial unreliable or incomplete? Why and how should trials on nutrients differ to those on symptom-relieving drugs?

     


    A new HFME discussion paper is available: Why research and try treatments when some groups claim a M.E. cure is coming soon?

     

    Wildly optimistic hope is essential for living with something as awful as M.E. but so is critical and logical thinking and genuine advocacy if we're ever to really improve the terrible situation we find ourselves in for ourselves and for all the future M.E. patients to come.

     


    A new  paper is available: Additional health testing and M.E.


    A new draft paper is available in Word format: A misdiagnosis letter for 'CFS' misdiagnosed (non-M.E.) patients

    This letter can be used by those who do not yet have a correct diagnosis, as well as by those who do. Rejecting your 'CFS' misdiagnosis is so important for your health and wellbeing and it is also important to let your friends and family know of this change.

    (To have family understand that all the crappy 'CFS' and 'ME/CFS' stories aren't about YOU, really is so helpful, for a start!)

    January 2011

    A new paper is available: Managing colds and flu and M.E.

    Preventing and managing colds and influenza effectively is a very important part of managing M.E. well generally.


    A new paper is available on the 'Antioxidants and M.E.' page: Liposomal glutathione and M.E.

    As vitamin C expert Dr Levy explains, Vitamin C is the premier extracellular antioxidant and glutathione is the premier intracellular antioxidant. Vitamin C and glutathione are powerful and important antioxidants taken alone and have an even more powerful synergistic effect when they are taken together. They both give the body the 'rapid and profound influx of electrons' needed to fight disease and to support heart, lung and brain health and immunity says Dr Levy, who also adds that 'Virtually all diseases and toxins/poisons cause sickness and death through their electron stealing activity.'


    A new paper is available: Enemas for detoxification in M.E.

    Dr Sherry Rogers writes that enemas are one of the best, safest, easiest, quickest and safest techniques to reduce pain, improve liver health and to reduce 'healing reactions' and symptoms from detoxification programs. She adds that to pass them up not because one is too ill to do them but because they are unconventional or slightly unpleasant is to put up with needless pain and suffering.

    Benefits of enemas include the following: reduced pain levels (in 90% of patients no matter what the cause of the pain), improved circulation and detoxification, removal of parasites, weight loss (due to old waste matter being removed), reduced load on the liver, reduced allergies and a stronger immune system, improved skin, improved bowel movements and a reduction of many other symptoms of various conditions; especially if the condition is caused or exacerbated by an over-acidic or toxic condition in the body.

    (Note that certain important cautions apply to this therapy.)


    A new DRAFT paper is available: Treating M.E. in the early stages

    The information contained in most of 'Treating M.E.' is aimed at those that have been ill with M.E. for years or even decades. For those that have only been ill with M.E. for a very short period of time, a different and/or more aggressive approach may be called for.


    The papers What is M.E.? Summary and The misdiagnosis of 'CFS' have been updated.

    December 2010

    A new draft paper is available in Word format: A misdiagnosis letter for M.E. patients

    I'm often asked how patients can print and show the HFME papers to friends and family, when the only diagnosis they have is 'CFS' even though they know for sure they have M.E. How can they show their family information which says 'CFS' is just a misdiagnosis, when they... have been telling them for so long they have 'CFS' and need 'CFS' to be taken seriously?

    So that is why I wrote this letter. It informs family members that the person has M.E. and not 'CFS' but that essentially, nothing has changed and the bottom line is they are ill and need support!

    There will also soon be a letter for all those misdiagnosed with 'CFS' that do not have M.E., and a questions and answers section sort of leading into why it's so important to reject the CFS misdiagnosis and why those of us who have done so..., have done so ***not*** because M.E. is far far more easily accepted and readily diagnosed where we are...far from it! But because we see withdrawing support from the 'CFS' concept and reclaiming our correct diagnosis as an essential part of regaining our basic human rights and stopping all the needless deaths and abuse....AND because it has immediate personal benefits, very often.

    (To have family understand that all the crappy 'CFS' and 'ME/CFS' stories aren't about YOU, really is so helpful, for a start!)

    The letter is 1.5 pages long and feedback is welcomed on wording etc.

    (Note: This letter is designed to be used by patients that have M.E. and feel they would benefit from letting those around them know that they do not have severe fatigue/'CFS' but are too ill to work out how to word  their own letter.  It is in no way suggested or recommended that all patients (mis)diagnosed with 'CFS' should use this letter.)


    A new draft paper is available: Enemas for detoxification in M.E.

    November 2010

    The HFME website's navbar has been redesigned and now contains many more sublinks.

    This makes finding the links to individual papers (not listed on the main navbar) easier.

    For example, hover your cursor over the 'Treating M.E.' link in the navbar now and links to all the main M.E. treatment papers will come up. Additional links (to all the vitamin papers etc.) are also included under the subheading 'Other treatment papers.'


    HFME's 'Treating M.E.' sections have all been updated and many sections which previously were only available via download, are now featured on the site. Each 'Treating M.E.' page now also contains links to all the other sections, at the bottom of the page, for easier navigation by patients.


    The entire HFME 'Treating M.E.' section is now available as a free 200 page e-book download. There are no restrictions on the printing of this e-book. At an average cost of 6 cents a page (USD / AUD / CAD / NZD) this book can be printed and spiral bound for around $15.

    Printed copies of this book will be available from Amazon.com in the near future.


    The HFME references page has been updated.


    A new paper is available: Assisting the M.E. patient in managing relapses and adrenaline surges

    M.E. patients have strict limits on how active they can be. If these limits are breached, symptoms worsen immediately and there is also a further deterioration 24 - 48 hours later, as well as the potential for repeated or severe overexertion to prevent any type of recovery, or cause disease progression or even death.

    This paper explains how carers, doctors, and also friends and family members and partners of M.E. patients, can help patients to avoid overexertion and so have their best possible long-term health outcome. It also describes the characteristics and signs of adrenaline surges and relapses in M.E. for the benefit of these individuals, as well as for newly ill M.E. patients themselves.

    This paper is designed to be read together with the more detailed Hospital or carer notes for M.E.  paper.


    A new paper is available: FIR saunas and M.E.

    This paper explains: What are the benefits of FIR saunas in M.E.? How do FIR saunas differ from traditional saunas? Why are FIR saunas often tolerated where other saunas, warm baths and warm weather, are not? What do FIR saunas cost? What cautions are necessary with FIR saunas?

    Includes a one-page summary paper for M.E. patients.


    A new paper is available: Iodine and M.E.

    This paper explains: What role does iodine play in thyroid health, and in preventing and treating breast and ovarian cysts? Why is iodine an important part of any detoxification regime? How do we test for iodine levels? What is the appropriate dose, and form, of iodine?


    A new paper is available: Fruit and vegetable juicing and M.E.

    This paper explains: What are the benefits of taking in part of the daily fruit and vegetable intake in juice form? Which type of juicer is the best type to buy? What kinds of produce can be juiced? Which juices are the lowest GI and GL? How can juices form part of a healthy liquid diet?


    The Antioxidants and M.E. paper has been updated.

    This paper, by Lesley Ben, is in two parts: Antioxidants and M.E. and RNase L, cancer risk, antioxidants and M.E.

    October 2010

    A new paper is available: Liposomal vitamin C and M.E.

    This paper provides information on the wonderful new nano-technology delivery system for vitamin C, and explains why Lypo-C may be as effective, or even more effective, than vitamin V given by IV, as well as far easier and cheaper to administer.

    Vitamin C expert Dr Levy recently stated:

    I found that liposome encapsulated vitamin C, taken orally, was roughly 10 times more effective clinically in resolving infectious diseases than the IVC. Having given thousands of IVCs and taken hundreds myself, this was difficult to comprehend, even though the clinical observation was quite straightforward. I subsequently realized that the liposome gave the ultimate bioavailability: intracellular delivery, including the mitochondria, endoplasmic reticulum, and even the nucleus. 2 to 6 packets daily covers most individuals for most situations.


    A new DRAFT paper is available in Word format: Assisting the M.E. patient in the use of computers and technology.

    The video 'Why everyone with M.E. needs a computer' talked about the enormous benefits to be had with computer use by M.E. patients. Unfortunately, using a computer is one also of the things that M.E. patients have to be most careful with, in order to prevent serious relapse. This paper looks at some of the ways that M.E. patients can get the most out of their computers, TVs and HDD/DVD recorders, mobile phones and other electronic devices while also using them in the most M.E.-friendly ways.

    Comments and further tips welcomed.


    A new DRAFT 2 part paper is available in Word format: Assisting the M.E. patient with bathing and haircare tasks and Assisting the M.E. patient with toileting tasks

    Comments and further tips welcomed.


    A new DRAFT paper is available for download: Assisting the M.E. patient in managing relapses and adrenaline surges

    M.E. patients have strict limits on how active they can be. If these limits are breached, symptoms worsen immediately and there is also a further deterioration 24 - 48 hours later, as well as the potential for repeated or severe overexertion to prevent any type of recovery, or cause disease progression or even death.

    It is very important that M.E. patients stay within their limits. Unfortunately, M.E. patients may find staying within these limits all of the time very difficult for a number of reasons.

    This paper explains how carers, doctors, and also friends and family members and partners of M.E. patients, can help patients to avoid overexertion and so have their best possible long-term health outcome. It also describes the characteristics and signs of adrenaline surges and relapses in M.E. for the benefit of these individuals, as well as for newly ill M.E. patients themselves.

    This paper is designed to be read together with the more detailed Hospital or carer notes for M.E.  paper.


    A new DRAFT paper is available for download: Assisting the M.E. patient in having blood taken for testing

    M.E. patients may experience significant difficulties in having blood taken for tests. This may be caused by low blood pressure, blood clotting abnormalities (including hypercoaguability), reduced circulating blood volume and an inability to maintain an upright posture. This paper explains some of the ways that these problems may be minimised.

    September 2010

    HFME have issued a press release: International M.E. expert disputes that 'CFS' XMRV retrovirus claim has relevance to M.E. patients, September 7th 2010.


    A memorial page and a memorial fund for Sharon O'Day

    Sharon O'Day, a long-term M.E. patient, died suddenly in April 2010.

    You can laugh or you can cry (and cry and cry) when you have severe M.E. and for the most part, as much as anyone could, Sharon faced it all with a wry grin and some very black humour - as well as a lot of wisdom, dignity, intelligence, strength and an enormous amount of compassion and kindness for others in the same situation.

    The memorial page also contains details of the Kiva memorial fund set up in Sharon's honor.


    The following papers and pages have been given a very minor update:  M.E.: The medical facts  M.E. The medical facts - Extended, What is M.E.? Extra extended version and Quotes on the outbreaks (and infectious nature) of M.E. and The outbreaks (and infectious nature) of M.E. 


    A new German translation of 'The M.E. symptom list - Summary' is available, thanks to the hard work of translator Gitta Wolf.  See the HFME translations page for links.


    Two new book reviews are available, both on books about vitamin D.

    One of the book reviews contains important information for any patient currently undertaking (or being prressured to undertake) the pseudo-scientific and very dangerous 'Marshall Protocol.' This protocol is unscientific and illogical and can even cause death.


    The Support Groups page has been updated.

    This page now contains details of several new support and chat groups for M.E. patients on Facebook - including a great (and much needed) new support group for carers of M.E. patients.


    An important new article by Gurli Bagnall is available: HIDING YOUR HEAD IN THE SAND IS DANGEROUS TO YOUR HEALTH

    August 2010

    A memorial page and a memorial fund for Aylwin Catchpole

    Aylwin Catchpole (also known as Jennifer Catchpole), a long-term M.E. patient, died suddenly on Friday August 6th 2010.

    Aylwin was a very special person to many of us and will be greatly missed. This memorial page has been created for her friends and loved ones to pay tribute to her and just generally explain to the world how wonderful and amazing she was.

    The memorial page also contains details of the Kiva memorial fund set up in Aylwin's honor.


    M.E. expert Dr Byron Hyde tours Australia in September

    If you think your doctor (or any other doctors you know) would be interested in hearing a talk by Dr Hyde on the topic of M.E. and 'CFS' then please do see if you can get them to attend - and perhaps to invite along as many colleagues as possible too. To increase the number of doctors in Australia that are familiar with Dr Hyde's work, and the difference between M.E. and 'CFS' and how to diagnose M.E. can only be a very good thing for us all.
     
    Dr Hyde is giving talks all around Australia throughout September. You'll need to very quickly check the website of your state 'CFS/ME' society for details and exact dates.
     
    (Note that this statement is in no way indicative of any level of support for any of the Australian state 'CFS/ME' societies.)


    A new DRAFT paper is available for download: Adjusting personal care tasks for the M.E. patient

    This paper lists some of the problems M.E. patients have with bathing, hair washing and hair care, and offers tips from other M.E. patients on various ways to get around some of these problems. Please submit your own tip if you don't see it here. Your feedback is welcomed.


    The 'Comments on the 'Lightning Process' scam and other related scams aimed at M.E. patients' page has been updated

    The 'Other comments on Lightning 'therapy' etc.' section now contains several new links.


    A new paper is available: The HFME M.E. ability and severity scale checklist

    It's included as part of 'The HFME 3 Part M.E. Ability and Severity Scale' page.
     
    This new paper provides a quick and new way to monitor your illness severity and the severity of certain symptoms over time.
     
    This paper is best printed out rather than read online.

    July 2010

    The HFME 3 part M.E. ability and severity scale  has been updated.

    The scale has been updated, and edited (by Roseanne Schoof). The download of the scale also now includes the summarised version of the scale.


    The myths about M.E. paper has been updated.

    This paper now includes some myths about the recent XMRV 'CFS' research and the hype and misinformation surrounding it.

    July 2010

    A new paper is available: The B vitamins and M.E.

    This paper looks at questions such as: What functions do the B vitamins perform in the body? What is the different role and dosage of each of the B vitamins? Why are vitamin B1 and B12 especially important in M.E.?  What is the best way to take B vitamins? What are the benefits of coenzymated B vitamins and B vitamin injections and IVs?


    A new paper is available: CoQ10 (ubiquinol), L carnitine, D ribose and M.E.

    This paper looks at questions such as: Why are these three supplements (plus magnesium) so important for heart health? What is the appropriate dosage of each of these supplements? How well tolerated are these supplements in M.E.? Which drugs dangerously deplete the body of CoQ10?


    A new paper is available: Sadness, grief, depression, anxiety and M.E. (A nutritional approach)

    This paper looks at questions such as: Why are sadness and grief NOT the same as clinical depression? What is the role of nutrition in minimising or treating problems of depression or anxiety? Which supplements can help with mental health issues? What tests can be used to diagnose certain health issues which may be the cause of mental health problems in some cases?


    The Tips for coping emotionally with M.E. paper has been updated.

    It contains an extract from an excellent article called  'It's not personal' by Clytie, an Australian severe M.E. patient. This amazing piece speaks for so many of us with severe M.E. It gives our extreme isolation and suffering a voice. This is true very severe M.E., and nothing to do with mere 'fatigue' or tiredness.


    The HFME homepage has been updated and streamlined. The overall website design has also been changed and improved.

    Changes made include the following:

    • A 'what's new' section has been added to the bottom of the navbar
    • Two submenus have been added to the navbar


    The 'A quick start guide to treating and improving M.E. with aggressive rest therapy, diet, toxic chemical avoidance, medications, supplements and vitamins' paper in Treating M.E.: The basics has been updated.

    • Part 2 of the 'Quick-start guide' now includes more detailed information about supplemental zinc, molybdenum, chromium, manganese and selenium.
    • A new section has also been added entitled 'A quick start guide to treating M.E. – on a budget'

    June 2010

    The Vitamin E and M.E. paper has been updated.

     


     

    The Vitamin D and M.E. paper has been updated.

     


     

    The Vitamin C and M.E. paper has been updated.

     


    Two new papers are available, both are on the topic of magnesium and M.E.

     

    1. Magnesium and M.E. This paper explains: What are the many benefits of magnesium? What are the symptoms of magnesium deficiency? What is the appropriate dose of magnesium for M.E. and how do you know if you are deficient? How safe is magnesium? Do I need oral, IV, injected or transdermal magnesium or a combination of different magnesium types? What are the extra benefits of transdermal magnesium?

    2. The magnesium checklist for M.E. patients.This paper provides simplified practical information on this treatment, for M.E. patients.


    A new paper is available: Calcium AEP and M.E.

    This paper explains: What are the benefits of calcium AEP? How does calcium AEP benefit autoimmune conditions and demyelinating conditions? Why is calcium AEP treatment especially relevant for those M.E. patients with raised ANA levels? What is the appropriate dosage for calcium AEP in M.E.?


    A new paper is available: Garlic and M.E.

    This paper explains: What are the benefits of garlic for M.E.? What is the best form of garlic, fresh or aged? What is the appropriate dosage for garlic in M.E.?


    The Tips for coping emotionally with M.E. paper has been updated.

    It contains new information about art therapy, craft therapy and pet therapy, as well as extracts from an excellent article called 'The Silence of the Dying' by brilliant author, and cancer patient, Sara Douglass. This article talks about death and chronic illness and how society deals with it (or doesn't!) and is highly recommended reading for M.E. patients and their friends and families.

    May 2010

    A new paper is available: Unrefined sea salt and M.E.

    This paper explains: What is the difference between table salt and unrefined sea salt? What role does salt play in the body and why do we need salt? How much unrefined sea salt do we need for good health?


    A prototype of a new grey ribbon for M.E. awareness has been created.


    There are now two HFME Amazon book lists. The first list focuses on books about M.E. politics, history and treatment. The second list focuses on books about nutritional medicine, diet and supplements and how to improve your health if you have M.E.

     
     
    These lists link to and lets you purchase (or find out more about) many of the M.E. books recommended here, at Amazon.com (a US based online bookshop). 
     
    Amazon sell both new and used (often out of print) books and the Listmania list saves you the effort of having to individually search for each book title separately. I would recommend that you read the reviews here first before purchasing as they are much more comprehensive however.

    If you buy books through using this Amazon link, a small percentage of your order total will be donated towards the HFME's advocacy efforts.

    April 2010

    A new paper is available: Vitamin D and M.E.

    This paper explains: What are the benefits of vitamin D? How do we test for low vitamin D? What is the appropriate dose, and form, of vitamin D? How safe is vitamin D?


    A new paper is available: Vitamin E and M.E.

    This paper explains: What are the benefits of vitamin E? What is the appropriate dose of vitamin E for M.E., and how much of each of the 8 different forms of vitamin E is best? How safe is vitamin E and how well tolerated in M.E.?

    March 2010

    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: The high-dose vitamin C checklist for M.E. patients

    The High-dose vitamin C and M.E. paper explained: 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?

    This new paper provides simplified practical information on this treatment suitable for M.E. patients.

    February 2010

    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:

  • Dr. Atkins' Vita-Nutrient Solution: Nature's Answer to Drugs by Robert C. Atkins
  • The New Optimum Nutrition Bible by Patrick Holford
  • Fire Your Doctor! How to Be Independently Healthy by Andrew W. Saul
  • Doctor yourself : natural healing that works by Andrew W. Saul
  • Good Health in the 21st Century by Carole Hungerford
  • How to live longer and feel better by Linus Pauling

  • 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'

    January 2010

    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

    December 2009

    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.

    November 2009

    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

     

    October 2009

    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.

  • Group comments on the importance of avoiding overexertion in M.E.
  • Group comments on the possibility of Oprah doing a show on M.E.


    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.

  • September 2009

    HFME memorial lists

    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:

    • A one page summary of the facts of M.E.
    • Hummingbirds
    • So you know someone with M.E.?, and
    • The misdiagnosis of 'CFS'

    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.

    August 2009

    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

    ------

    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

    June 2009

    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.)

    May 2009

    Cost-price products featuring 'The Hummingbirds' Foundation for Myalgic Encephalomyelitis' logo, were made available via Cafepress.


    The HFME site was established.

    November 2004 to May 2009

    See the old HGME website's 'What's new' page.

    Subscribe to the HFME newsletter!

    To subscribe just click here

    Live Support

    Exciting book news!

    Click here to purchase the first HFME book!


    The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

    He writes:

    "There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

    "This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

    Paperback $18.95
    Hardcover $22.95