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.

Document downloads

All of the major papers on this site are available to be downloaded in either Word or PDF format. Some papers may also be downloaded in a large-type PDF format.

This page features the links to all of these downloads on one page. The papers are listed alphabetically and are in three sections:


Right-click on a file link to save a copy of the file to your computer

Left-click on a file link to open the file to view (and then print and/or save the file if you wish by clicking on 'File' and then 'print' or 'save as')

Click here for information/links on downloading the free Foxit PDF reader program.

Click here for information/links on downloading the free Adobe PDF reader program.

Click here to download a free Microsoft Word reader program.

Downloads

A CBT/GET Warning Letter

This letter is for M.E. patients that have tried everything to avoid being forced to participate in CBT or GET programs against their will. It may help to send those who are recommending and/or going to be administering the program/s a warning letter such as this one. This letter firmly informs those involved of the scientific facts, and warns them that you or your family will sue if you are harmed or killed by these unethical and unscientific interventions.

This letter (including the summary of the ability scale) can be downloaded in a printer friendly Word or PDF format


A day in the life of severe M.E.

This text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


A misdiagnosis letter for M.E. patients and  A misdiagnosis letter for 'CFS' misdiagnosed (non-M.E.) patients

These 2 new new draft papers are  available in Word format: Misdiagnosis letters


A Million Stories Untold 

This paper is designed to help explain to a sufferers family members and friends that M.E. has nothing to do with being tired and that all the rumours they may have heard about it (and about 'CFS') aren't true. It explains all the facts using hard evidence from the world's leading M.E. experts and is fully referenced. A must-read for friends and family members.

This 14 page text can be downloaded in a printer friendly Word or PDF format


Anaesthesia and Myalgic Encephalomyelitis

This page can be downloaded (either for you or your doctor or anaesthetist) in a printer friendly Word format, PDF format or as a large-print PDF

This paper is also included in the all-in-one Practical Tips document in a printer-friendly Word format, PDF format or as a large-print PDF

The 2 page paper: 'So you are going to have surgery? Information on anaesthetics and M.E.' by Dr Elizabeth Dowsett is also available to save/print in Word format.


Are we just 'marking time?' 

This paper looks at the problems with the flawed (but popular with some advocates) 'until we have a unique test for M.E. and more research, we can't expect anything to change' approach to M.E. advocacy. It asks the question; why are we waiting to act when tests for M.E. exist RIGHT NOW, and the need for activism and action is so very urgent?

This text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy (co-authored by Lesley Ben)

Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.

A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. This paper includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.

This 3 page text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


'CFS' and M.E. comparison chart (co-authored by LK Woodruff)

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

This text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


Fatigue Schmatigue 

This text is aimed at those who either have M.E. themselves, or who are involved in M.E. research and advocacy rather than readers who are new to the topic of M.E. and who are just trying to get a basic overview of the illness.

The Energy Schmenergy paper discusses why terms such as ‘ no energy’ and ‘exhaustion’ in M.E. are just as inaccurate, misleading and politically harmful as the word 'fatigue, as does the paper If not ‘fatigue’ then.. what? as explained previously in Fatigue Schmatigue

The document containing the three papers Fatigue Schmatigue, Energy Schmenergy and If not 'fatigue' then what? can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


Hospital or carer notes for M.E. 

Patients with Myalgic Encephalomyelitis have a variety of specific care needs, some of which are well-known and common to a variety of other diseases and others which are unique to M.E. and with which hospital staff or carers may be wholly unfamiliar. Inappropriate care (even if well intentioned) can have serious consequences for M.E. patients in the short term and the long term, or even permanently. Knowledge of some of the basics about how M.E. affects the body is vital if you are in the position of providing care for someone with M.E. in order to avoid additional unnecessary suffering and disability. 

This paper provides general information on how to appropriately care for M.E. patients for carers and hospital staff. An optional form is also provided that M.E. patients can print and fill out to give carers more information about their illness, where appropriate.

A copy of this text combined with a copy of the 'Why severe M.E. patients are housebound and bedbound'  text may also be downloaded in a printer friendly Word format, PDF format or as a large-print PDF  


Hummingbirds 

This paper expands on the idea of hummingbirds as a metaphor for Myalgic Encephalomyelitis. See also: The Hummingbird Gallery

This text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


M.E. is not fatigue, or 'CFS' 

The new paper Myalgic Encephalomyelitis is not fatigue, or 'CFS' explains why M.E. is not defined by mere 'chronic fatigue' and why M.E. and 'CFS' are not synonymous terms, as well as why a diagnosis of CFS based on any of the definitions of CFS can only ever be a misdiagnosis.

The full-length (7 page) version of this text can be downloaded in a printer friendly Word format, PDF format, or as a large-print PDF


M.E.: The medical facts

A purely medical overview of the illness including detailed research findings. 

This 10 page text can be downloaded in a printer friendly Word format, PDF format or as a large print PDF

The full-length EXTENDED 16 page version of this text can also be downloaded in a printer friendly Word format or PDF format

The 2 page summary version of this text can also be downloaded in a printer friendly Word format, PDF format or as a large print PDF

To download a PDF copy of the super summarised version of the text (and all other super-summaries) in standard format (plus large type format), click here.


M.E. vs M.S.: Similarities and differences 

M.E. and MS are very similar diseases medically in many ways. However, for reasons that have nothing to do with science, the two diseases are treated very differently politically and socially. The contrast could not be more stark. M.E. patients are treated terribly (and often abused terribly, even unto death in some cases), yet there is no public outcry as there would be if MS patients were treated in this same way. Thus people with M.E. find themselves in the terrible position of actually ENVYING people who have MS.

This paper is available in three different versions. Note that the 'condensed and modified' version of the text has been modified to omit all reference to individual case studies, while the first two versions do include significant information about individual case studies.

This standard text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF

The 6 page (plus notes) condensed and modified version of this text can also be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


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 paper explains why M.E. is THE shocking disease.

This 5 page text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


Practical tips for living with M.E. : Compendium

Overview: Treating and living with M.E.

Practical tips: Practical tips for living with M.E.

Cognitive tips: The HFME reminders and cognitive tips list

Tips on coping: Tips for coping emotionally with M.E.

Adrenaline surge and relapse tips: Assisting the M.E. patient in managing relapses and adrenaline surges and Tips on resting for M.E. patients

Computer and technology tips: Assisting the M.E. patient in the use of computers and technology

Childcare tips: Tips for M.E. patients that are parents

Personal care tips: Assisting the M.E. patient in managing bathing and haircare tasks and Assisting the M.E. patient in managing toileting tasks

Blood test tips: Assisting the M.E. patient in having blood taken for testing

Food tips: Buying, cooking and preparing food is so hard (or impossible) and makes me so much more ill, how can I try to minimise this? and Chewing and swallowing food is very hard for me, what can I eat and/or how can I modify food so I can handle it better? These two papers are available in the Word/PDF download only.

More tips: Finding a good Dr when you have M.E. and Deep healing in M.E. - An order of attack!

Download a copy of this all-in-one document in a printer-friendly Word format, PDF format or as a large-print PDF


Problems with 'our' M.E. (or 'CFS' 'CFIDS' or 'ME/CFS' etc.) advocacy groups

This paper looks at the problems with our advocacy groups, and why so many of our groups are not engaged in useful advocacy and what we can do to help change this.

This paper is also available as animated video, and in audio format, see the Audio and Video page for details.

This 3 page text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


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’

This full-length version of the text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


Problems with the use of 'ME/CFS' by M.E. advocates 

This paper looks at why it is not in our best interests as M.E. patients and advocates to use or support the use of 'ME/CFS.'

This full-length 4 page (plus 7 extra pages of notes and quotes) text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


Putting research and articles into context

Because of the politics and financial interests involved in M.E. research it is vitally important that before you read anything about the illness that you understand the context in which it was written. This paper looks at the scientific facts which easily disprove the propaganda surrounding M.E. in so many research studies and articles

This full-length 12 page text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF

The 2 page summary of the text can also be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


Smoke and Mirrors 

This fully referenced paper looks at the lack of evidence (and financial and political motivations) behind the 'behavioural' model of M.E. and the use of interventions such as CBT and GET, the physical effects of CBT and GET on patients with M.E., and outlines a strategy for the resolution of the confusion caused by the 'CFS' disease category. This text forms the introduction to the CBT and GET database.

The full-length version of this text can be downloaded in a printer friendly Word, PDF or large-print PDF format


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 this paper.

See also: So you know someone with M.E.? Part 2: Tips on coping for friends, partners and family members.

Parts 1 and 2 of this text can be downloaded together in a printer friendly Word or PDF format

See below for links to the leaflet download of this paper.


Testing for M.E

An overview of some of the series of tests which can be done to help confirm a suspected M.E. diagnosis.

This full-length 11 page (plus notes) text can also be downloaded in a printer friendly Word format, PDF format or as a large-print PDF

The 3 page summarised text (plus notes sections) can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


Testing for M.E.: Plan D

Diagnostic tests for M.E. exist, as described in Testing for M.E. 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.

This text can be downloaded full-length in a printer friendly Word format, PDF format or as a large-print PDF


The 3 Part Myalgic Encephalomyelitis Ability and Severity Scale

A valuable tool for monitoring the course of your illness over time.

The original version of this text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


The CBT and GET database 

This paper is a comprehensive guide to the use of CBT and GET on patients with Myalgic Encephalomyelitis. It contains excerpts and links to literally hundreds of articles and research studies which expose the lack of scientific legitimacy (and the hidden financial and political motivations) underlying the 'behavioural' paradigm of M.E. and the use of these interventions. 

View/Print/Save the full-length 173 page version of this text in Word or PDF format

View/Print/Save the condensed 40 page version of this text in Word or PDF format


The effects of CBT and GET on patients with M.E.

No evidence exists to show that CBT or GET are appropriate, safe or useful for patients with M.E. So what effect do these interventions have on M.E. patients medically? Most importantly, are they safe for people with M.E.? This paper looks at the physical effects of CBT (psychotherapy) and GET (exercise) on patients with M.E.

Save the full-length 12 page version of this text in Word, PDF or large-print PDF format

Save the condensed 4 page version of this text in Word, PDF or large-print PDF format


The importance of avoiding overexertion in M.E.

The full-length 10 page version of this text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF

The summarised 2 page version of the text can also be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


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? See also: Where to after a 'CFS' (mis)diagnosis?

The full-length 11 page version of this text (parts 1 and 2 together) can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF

A summarised 3 page version of this text is also available (featuring just the first section) to be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


The myths about M.E.

This paper lists some of the most common myths about the illness.

This 6 page (plus references) text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


The comprehensive M.E. symptom list 

A comprehensive symptom list is an important tool for anyone with M.E.

The full-length 21 page version of this text can be downloaded in a printer friendly Word format, PDF format, or as a large-print PDF

The summarised (2-page) version of the text can also be downloaded in a printer friendly Word format, PDF format, or as a large-print PDF


The WHO ICD in relation to M.E. and ‘CFS’ by Lesley Ben

The short version of the text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF

The full-length version of the text can also be downloaded in a printer friendly Word format or PDF format


Treating and living with M.E.: Overview

A guide to some of the basics you need to know to live with, cope with and to treat M.E.

This paper is included in the all-in-one Practical Tips document in a printer-friendly Word format, PDF format or as a large-print PDF


What is M.E.? 

A historical, political and medical overview of M.E. 

This 12 page (plus references) text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF

The 30+ page (plus references) version of this text can also be downloaded in a printer friendly Word format or PDF format

The 2 page summary of this text can also be downloaded in a printer friendly Word format, PDF format or as a large-print PDF

To download a PDF copy of the super summarised version of the text (and all other super-summaries) in standard format (plus large type format), click here.


What it feels like to have M.E.: A personal M.E. symptom list and description of M.E.

This paper combines the available research on M.E. with a personal description of the illness to try to explain what it really feels like to have M.E. This is not just another 'list' of symptoms - more than 50 individual symptoms (and other characteristics) of M.E. have been described in detail.

The full-length version of this text can be downloaded in a printer friendly Word format, PDF format (40 A4 pages) or as a large-print PDF (83 A4 pages).

The condensed (half as long) version of the text can also be downloaded in a printer friendly Word format, PDF format (20 A4 pages) or as a large-print PDF (43 A4 pages)


Where to after a 'CFS' (mis)diagnosis? 

Every diagnosis of 'CFS' is a misdiagnosis, so where does that leave you and what should you do if a 'CFS' diagnosis is the only diagnosis you have? This paper is designed not for people with M.E., but for everyone who doesn't have M.E. but has been given a misdiagnosis of 'CFS' based on any of the 'CFS' definitions and so been denied appropriate diagnosis and treatment for their illness. This new paper is essential reading for everyone (mis)diagnosed with 'CFS' or claiming to advocate for 'CFS' patients - please redistribute it widely.

The 4 page 'Where to after a 'CFS' (mid)diagnosis' text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF

The full-length 10 page version of this text (which includes 'Where to after a 'CFS' (mid)diagnosis' plus the additional 'Questions and answers' section) can also be downloaded in a printer friendly Word format or PDF format


Who benefits from 'CFS' and 'ME/CFS'? co-written and edited by Lesley Ben.

For whose benefit was ‘Chronic Fatigue Syndrome’ created, and for whose benefit is it so heavily promoted despite its utter lack of scientific credibility? Who benefits from Myalgic Encephalomyelitis and ‘CFS’ being mixed together through unscientific concepts such as ‘CFS/ME’ and ‘ME/CFS’ and Myalgic ‘Encephalopathy’? Who benefits from the facts of M.E. remaining ignored, obscured and hidden in plain sight?

This paper looks at all of these very important questions.

This 10 page text (plus 7 pages of references) can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


 
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?
 
This 4 page (plus notes) text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF

 

Why patients with severe M.E. are housebound and bedbound

Knowledge of some of the basics of how M.E. affects the body and the limitations of each patient are vital if you provide care for someone with M.E. or even if you make comments or have any type of input into the way the disease is managed, in order to avoid additional unnecessary suffering and disability.

This paper provides a brief overview of this topic for friends and family members, and also for carers, doctors or hospital staff.

A copy of this text combined with a copy of the 'Hospital or carer notes for M.E.'  text may also be downloaded in a printer friendly Word format, PDF format or as a large-print PDF


Why the disease category of ‘CFS’ must be abandoned

M.E. and 'CFS' are not the same. This paper discusses why renaming, refining or sub-grouping 'CFS' cannot work and why 'CFS' must be abandoned. 

This 4 page (plus 1 page of references) text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF

There is not a 2-page summary of this text available, but the 2-page summary of 'What is M.E?' makes many of the same points, see: What is M.E.? Summary


XMRV, 'CFS' and M.E. by Sarah Shenk

This text can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF

See also: International M.E. expert disputes that 'CFS' XMRV retrovirus claim has relevance to M.E. patients,


To see all the free e-book and other e-books and printed books available from HFME please visit the HFME books page.

Leaflet downloads

A small number of papers are available to be downloaded in a printable leaflet format, for easy redistribution.

To assemble a leaflet, print each sheet of paper on both sides and then fold each sheet of paper in half. These leaflets are designed to be printed on A4 paper.


A one-page summary of the facts of M.E.

Two downloads of this paper in leaflet format are available.

  • The standard version of this text contains the facts about M.E. only ('CFS' is not mentioned), along with a brief references section. This leaflet can be downloaded in Word or PDF format.
  • The EXTRA version of this text contains the facts about M.E., along with a brief section explaining the differences between M.E. and 'CFS.' This leaflet can be downloaded in Word or PDF format


Hummingbirds 

This paper expands on the idea of hummingbirds as a metaphor for Myalgic Encephalomyelitis and includes a brief description of the difference between M.E. and 'CFS.'

The one page/one fold leaflet version of this text can be downloaded in Word or PDF format.


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!

See also: So you know someone with M.E.? Part 2: Tips on coping for friends, partners and family members.

The one page/one fold leaflet version of  part 1 of this text (by Jodi Bassett) can be downloaded in Word or PDF format.

The one page/one fold leaflet version of  part 2 of this text (by Lajla Mark and Jodi Bassett) can be downloaded in Word or PDF format


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?

The one page/one fold leaflet version of this text can be downloaded in Word or PDF format.

HFME Business card design (handouts) downloads

Two business card designs are available, so that advocates and patients can take advantage of cheap bulk business-card printing deals and help spread the word about M.E.

Business card designs are 85 x 55mm.

The first design is based on 'What is M.E.?' and contains a brief description of M.E. and why it is different to 'CFS.'

  • Click here to download the front of the card design in PNG format.
  • Click here to download the back of the card design in PNG  format.

The second design is based on 'M.E.: The medical facts' and only contains facts about M.E.

  • Click here to download the front of the card design in PNG format.
  • Click here to download the back of the card design in PNG format.

Sample image:

A note on printing large files

As the database files and some of the other extended files are so large, you may prefer to save the file to disc, or other storage device, and take it to your local printer to be printed. This may well be cheaper than printing such a large file on your home printer. Most printers may prefer PDF format, and some printers will even let you email them the file to be printed.

You might also like to get some additional copies done (of the database or one of the papers) to hand out to others.

Permission is given for all of these documents to be freely redistributed by e-mail or in print for any not-for-profit purpose provided that the entire text (including this notice and the author’s attribution) is reproduced in full and without alteration.

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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