A Hummingbirds' Guide to M.E.
Information on the neurological disease Myalgic Encephalomyelitis
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The A Hummingbirds Guide to M.E. Newsletter will then be sent to to you each month anything new is added to the site. This will probably mean only 12 (or less) plain text emails a year and of course you can unsubscribe from the list at any time.
The email newsletter will often contain far more detailed information on new projects than the updates featured on the website (below).
May 2009
5 new quote sections have been added to the Myalgic Encephalomyelitis Quotes page.
The following papers/letters/reviews have been updated.
April 2009
A new paper is available: A warning on ‘CFS,’ 'ICD-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.
In other words, a blanket rejection of all parts of all 'CFS' research could be just as dangerous as a blanket acceptance of all bogus 'CFS' research.
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. Thus 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.
A link to this paper, along with a very short summary of it, will soon be added to all pages on the site where any type of 'CFS' or 'ME/CFS' research or advocacy writings are listed/featured.
In future, of course, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of 'CFS' must be abandoned for the benefit of M.E. patients and all other patient groups involved. The M.E. community must work uncompromisingly towards these goals.
Smoke and Mirrors and The effects of CBT and GET on patients with Myalgic Encephalomyelitis have been updated, along with The CBT and GET database.
A Hummingbirds Guide to M.E.is now on Facebook.
Click on the link to join.
A Hummingbirds Guide webstore update
Many new items have been added to the site's new art gallery webstore. New additions include: four new clear perspex hummingbird hangings, two new animal portrait prints and more than half a dozen new small abstract oil paintings.
Prices for oil paintings start at $60, and prints at $21 - all prices include FREE postage worldwide.
Most importantly, 15-50% of the purchase price on each item will be donated towards M.E. research and advocacy (to Dr Hyde's Nightingale Foundation) and this donation amount will also be matched in full by my family.
Click here to go to the gallery.
(To learn about how you can also contribute money to M.E. activism and advocacy through your vitamin and supplement purchases at VRP or iHerb, and at no further cost to yourself, click here.)
March 2009
The following summary papers have been updated:
- Avoiding Overexertion in M.E. - Summary
- M.E. The Medical Facts - Summary
- M.E. The Medical Facts - Super-Summary (PDFs only)
- Putting Research and Articles on M.E. into Context - Summary
- Testing for M.E.: Summary
- The M.E. Symptom List Summary
- Treating M.E.- The Basics (Summary)
- What is M.E.? Summary
- What is M.E.? Super Summary (PDFs only)
The following full-length/condensed papers have been updated:
- A day in the life of severe Myalgic Encephalomyelitis
- A Million Stories Untold
- Anaesthesia and Myalgic Encephalomyelitis
- Are we just 'marking time?'
- Fatigue Schmatigue, Energy Schmenergy and If not 'fatigue' then what?
- Hints for Coping with M.E. Emotionally
- Hospital or carer notes for M.E.
- Hummingbirds
- M.E. The Medical Facts - Extended
- M.E. vs MS: Similarities and differences
- Myalgic Encephalomyelitis is not fatigue, or 'CFS'
- Myalgic Encephalomyelitis: The Medical Facts
- Practical tips for living with Myalgic Encephalomyelitis,
- Problems with 'our' M.E. (or 'CFS' 'CFIDS' or 'ME/CFS' etc.) advocacy groups
- 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’
- Problems with the use of 'ME/CFS' by M.E. advocates
- Putting Research and Articles into Context
- Testing for Myalgic Encephalomyelitis
- The 3 Part Myalgic Encephalomyelitis Ability and Severity Scale
- The importance of avoiding overexertion in Myalgic Encephalomyelitis
- The misdiagnosis of CFS
- The Myths about M.E.
- The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List
- Treating Myalgic Encephalomyelitis - The Basics
- What is M.E.? Extra extended version
- What is Myalgic Encephalomyelitis? A historical, medical and political overview
- What it feels like to have Myalgic Encephalomyelitis: A personal M.E. symptom list and description of M.E.
- What it feels like to have Myalgic Encephalomyelitis: Condensed
- Where to after a 'CFS' (mis)diagnosis?
- Who benefits from 'CFS' and 'ME/CFS'?
- Why patients with severe M.E. are housebound and bedbound
- Why the disease category of ‘CFS’ must be abandoned
Every original paper available in Word/PDF format has been updated, with the exception of the entire CBT and GET Database.
The section on the definition and value of the term 'ICD-CFS' has been updated on the site.
This site no longer supports the use of the term 'ICD-CFS' in any context as the term ‘ICD-CFS’ is misleading and in many ways just damaging as terms/concepts like ‘ME/CFS’ or ‘CFS/ME.’ These terms only help continue the confusion between M.E. and 'CFS' which benefits only vested interest groups.
For a brief overview of this topic see: What is M.E.? Extra extended version or Putting Research and Articles into Context.
For further details of the WHO ICD classifications of M.E. and ‘CFS’ worldwide (and why terms such as ‘ICD-CFS,’ ‘ME/CFS’ and Myalgic Encephalopathy’ must be avoided) please see the new (detailed) paper by patient advocate Lesley Ben entitled: The World Health Organization’s International Classification of Diseases (WHO ICD), ME, ‘CFS,’ ‘ME/CFS’ and ‘ICD-CFS’
- Note 1: Currently this paper on ICD codes is open for consultation and is not yet finalised. Thus some information given on ICD codes on this site may may change as further information comes to light. All relevant papers will be updated and corrected when this paper is finalised. Your patience is appreciated.
February 2009
A new paper is available: M.E. vs MS: 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.
Please redistribute this new paper widely.
A new version of the video: 'Testing for ME' is available
'Testing for M.E., version 2' f
eatures an alternate ending and vastly improved sound quality.January 2009
A new paper is available: Who benefits from 'CFS' and 'ME/CFS'?
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 paper was co-written and edited by Lesley Ben.
Psychologically based ‘treatments’ touted by some groups as being very beneficial or even curative for ‘chronic fatigue’ (a term used interchangeably with CFS and M.E. by these groups) such as ‘Reverse Therapy,’ ‘Mickel Therapy,’ ‘Emotional Freedom Techniques’ (EFT) and the ‘Lightning Process,' may or may not be useful for those with fatigue caused by various emotional or behavioural problems, but they simply cannot improve authentic M.E. In fact they can often cause very severe relapse.
If family members are pressuring you to participate in scams such as the Lightning process, Reverse therapy, Mickel therapy, EFT and so on, in the mistaken belief that they are safe, useful and appropriate treatments for M.E., see the new Comments on the 'Lightning Process' (etc.) scam page.
Two new author pages are available;
M.E. articles and advocacy by Lesley Ben
M.E. articles/letters by Dr John H Greensmith
M.E. articles and advocacy by Criona Wilson (mother of Sophia Mirza),
Three new M.E. videos are available!
'Some facts about Myalgic Encephalomyelitis (and me)' and 'What getting Myalgic Encephalomyelitis feels like (to me)' and 'Treating M.E.'
Treating M.E. - The Basics has been updated and now includes more information about the benefits of high-dose ubiquinol (reduced CoQ10) and Carnitine.
What is M.E.? Summary has been updated and now includes a new 'A one-page summary of the facts of M.E.' section added onto the end, which sums up 10 basic facts about M.E. in simple language, using bullet points. An excerpt:
· '
Why are Myalgic Encephalomyelitis patients so severely and uniquely disabled? For a person to stay alive, the heart must pump a certain base-level amount of blood. Every time a person is active, this increases the amount of blood the heart needs to pump. Every movement made or second spent upright, every word spoken, every thought thought, every word read or noise heard requires that more blood must be pumped by the heart.However, the hearts of M.E. patients only pump barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up to 50%. Thus M.E. patients are severely limited in physical, cognitive and orthostatic (being upright) exertion and sensory input.
This problem of reduced circulating blood volume, leading to cardiac insufficiency, is why every brief period spent walking or sitting, every conversation and every exposure to light or noise can affect M.E. patients so profoundly. Seemingly minor 'activities' can cause significantly increased symptom severity and/or disability (often with a 48-72 hour delay in onset), prolonged relapse lasting months, years or longer, permanent bodily damage (eg. heart damage or organ failure), disease progression or death.
If activity levels exceed cardiac output by even 1%, death occurs. Thus the activity levels of M.E. patients must remain strictly within the limits of their reduced cardiac output just in order for them to stay alive.
M.E. patients who are able to rest appropriately and avoid severe or prolonged overexertion have repeatedly been shown to have the most positive long-term prognosis.'
This new summary paper will be added to many other papers on the site, once the text is finalised.
Some comments and discussions in the AHGs Yahoo groups have been so wonderful and useful, that I feel like they would be enjoyed by other members of the M.E.community, so I have reposted some of them on the site (with permission).
The first discussion topic available is: Group comments on being told 'you look well' (when you are very ill with M.E.) and on getting nasty comments related to M.E.
Purchases of art through this site can now be made through the Art Gallery Store.
A percentage of the purchase price (15% to 50%) from every artwork bought here will also be donated towards much needed M.E. research and advocacy. A number of new pieces have been added to the gallery in 2008. To view artworks, see the The Main Gallery.
December 2008
The Anaesthesia and Myalgic Encephalomyelitis page has been updated.
The Myths about M.E. paper has been updated.
The 3 Part Myalgic Encephalomyelitis Ability and Severity Scale paper has been updated.
The About the Author page has been updated.
Scroll down to the bottom of the page to read about the Daya photo project and to view some of the weird and wonderful photos I've received from Daya.
A new book review is available, for Peggy Munson's brilliant book of M.E. related poetry entitled Pathogenesis
November 2008
This month marks the site's four year anniversary, and a significant change to the overall website design.
The new design of the site is designed to be more practical and more user-friendly. The main changes include: the brightness of the colours (particularly the background colour) has been reduced to reduce eye strain, the text boxes are wider to make reading easier and each page on the site can now more easily and accurately be printed.
A new site feature is available: the Information Guides page
This website has become so large that its features can no longer all be taken in at a glance. In order for site visitors to find the information they need more quickly, this page features guides relevant to each of the different types of visitors to the site. Guides available so far include the following:
- Severe M.E. patients
- M.E. patients
- Patients given a ‘CFS’ diagnosis (but that do not have M.E.)
- Doctors
- Carers looking after M.E. patients
- Friends and family of M.E. patients
- Parents of children with M.E.
- Members of the public who would like to know a little more about the disease
- Media and politicians
- Human rights groups
A new site feature is available: the Document Downloads page
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 for the first time: listed alphabetically.
A new paper is available: 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.
Testing for M.E. has been fully updated.
The summarised version of this text has also been extended.
Hospital or carer notes for M.E. and Treating Myalgic Encephalomyelitis - The Basics have been given some minor updates, as have The Terminology Explained and Website References pages.
October 2008
A new paper is available: Are we just 'marking time?'
This paper looks briefly 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?
Essential reading for all M.E. patients and advocates.
The paper
The misdiagnosis of CFS has been updated with two new sections listing the symptoms of Chiari Malformation and Devics's disease as some of the diseases that may be misdiagnosed as 'CFS.'The paper Myalgic Encephalomyelitis is not fatigue, or 'CFS' has been updated.
The Canadian Guidelines Review has been updated.
A new section has been added to the Dr. Paul Cheney M.D page: 'Is Cheney talking about M.E. or 'CFS'?'
A new page entitled MERGE, ‘ME/CFS’ and ‘CFS.’ has also been added to the site. This page also asks whether or not MERGE/MERUK are currently studying M.E. patients or mixed 'CFS' patient groups and what the implications of this change are for patients, and scientifically and ethically.
September 2008
What is Myalgic Encephalomyelitis? A historical, medical and political overview and Myalgic Encephalomyelitis: The Medical Facts are now available in a new super-summarised format.
The new text can be printed out in a handy business card or small leaflet format, for easy distribution. It is also available in the usual plain text and large type versions.
See: What is M.E.? Super Summary and M.E. The Medical Facts - Super-Summary
August 2008
Treating M.E. - The Basics has been further updated and extended and now includes a number of new sections.
July 2008
Treating M.E. - The Basics and Treating M.E.- The Basics (Summary) have been fully updated and extended.
June 2008
Donate more 'free' money towards M.E. activism and advocacy!
If you are a new customer to iHerb, and you put in my code when you order, you get 5$ off your first order, and (as explained below in the section on VRP affiliation) 4% of your order total for the next year will be donated to the Nightingale Research Foundation. iHerb sells everything from neti pots, to NADH, to ubiquinol and their international postage charges are very reasonable.
My code is JOD573 and the website is www.iherb.com
Myalgic Encephalomyelitis: The Medical Facts Summary and The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List Summary have been translated into Dutch by Lotte Mayar.
See the Translations page for links to these new Word and PDF files.
May 2008
A new paper is available: 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’
At first glance the idea that the name ‘CFS’ is the cause of so much harm and misunderstanding seems so obvious as to not even merit further discussion. It seems so logical that one of the first things that patients given this diagnosis must do is campaign hard to have the name ‘CFS’ changed to something far more serious sounding and more appropriate.
But the problem is that it only appears that way if you don’t have all, or indeed ANY, of the facts. When you finally do, you quickly become aware of what a sham the idea of renaming ‘CFS’ really is and how it will make things so much WORSE for all the different patient groups involved.
Please read this information on the US so-called ‘Fair Name’ campaign carefully. This proposed ‘CFS’ to ‘ME/CFS’ name change is just another time-wasting diversion that these vested interest groups are hoping we will fall for, nothing more. Don’t let yourself be the unwitting tool of unethical insurance companies through ignorance!
The following papers have ben updated:
April 2008
A new paper is available: 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 illnesses 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.
The Treating M.E. - The Basics paper has had some minor updates.
March 2008
A new paper is available: 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.'
PLEASE read this paper if you use or support the use of 'ME/CFS' and are a M.E. sufferer/advocate!
A new Gallery is available: The Animal Portraits Gallery
Several new paintings have also been added to The Main Gallery.
Donate 'free' money towards M.E. activism and advocacy!
I've signed up to the VRP affiliation scheme, which means that (if you are a new VRP customer) and you make an order and key in my affiliate number, then I'll receive 15% of the cost of your order (and all orders you make with them for the next year). I will be donating 100% of any funds raised to M.E. research and advocacy. (To the Nightingale Research Foundation run by Dr Hyde M.D., a group very worthy of our support.)
VRP is an online US shop which sells a large variety of vitamins and supplements.
This idea is explained in more detail in 'Treating M.E. - The Basics.' Click here for more information, or just go directly to the www.vrp.com website and start shopping! My affiliate number is 647871
February 2008
The Treating Myalgic Encephalomyelitis - The Basics paper was updated.
Many new links were added and the treatment examples section was fully updated and now provides far more detailed information on this topic.
Minor updates were made to the following papers (and their summaries, where applicable):
- The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List
- What it feels like to have Myalgic Encephalomyelitis: A personal M.E. symptom list and description of M.E.
- Myalgic Encephalomyelitis is not fatigue, or 'CFS'
- A Million Stories Untold
- Practical tips for living with Myalgic Encephalomyelitis, and
- A day in the life of severe Myalgic Encephalomyelitis
January 2008
The Hummingbirds paper was updated.
This essay expands on the idea of hummingbirds as a metaphor for severe Myalgic Encephalomyelitis.
The Misdiagnosis of 'CFS' paper was updated.
None of the definitions of CFS defines M.E., so what do they define? What does a diagnosis of 'CFS' actually mean?
The prices of the prints available in the Online Gallery were reduced.
30 – 50% of the purchase price of each item sold will be donated towards funding M.E. research and advocacy.
December 2007
A new paper is available: 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.
There are now seven different 'A Hummingbirds Guide to M.E.' advocacy videos available on YouTube.
See the Audio and Video page for more information and for links.
November 2007
Would you like to see your M.E. story on a M.E. YouTube video?
Many people have shared their M.E. stories, and it is important we continue to put our stories out there, genuine M.E. stories to try to counteract all far more common 'miracle recovery' and psychological and/or fatigue based case studies out there of people who do not have M.E. but instead some fatiguing illness misdiagnosed as 'CFS' and just to let people out there know what M.E. is really like, how devastating it is and so that people with M.E. can know they aren't alone too..
So I'm after submissions of photos, and a little bit of information about how M.E. has affected your life, to make some short videos for YouTube.
The idea is that I'll show your picture for a few seconds and then give the viewer some basic facts about how M.E. has affected your life. Click on the link in the title for more information.
October 2007
A new paper/video and audio file is available: Problems with 'our' M.E. (or CFS, CFIDS or ME/CFS) 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. These groups and individuals have caused enough needless extra suffering, abuse, neglect and DEATH. What is happening is a human rights travesty on a massive scale. This has to stop. It has to BE stopped.
This paper is also available as (animated!) video, and in audio format, see the Audio and Video page for details.
September 2007
A new paper is available: 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.
See also: Why ‘CFS’ must be abandoned: Extra
What is Myalgic Encephalomyelitis? and Myalgic Encephalomyelitis: The Medical Facts have been fully updated.
New 16-30 page extended and extra-extended versions of these texts are now also available.
A Million Stories Untold was updated.
This paper is designed to help explain to 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 condensed version of this text is also now available, along with the full-length version. Both versions also now feature a 1 page summary of the text.
August 2007
The importance of avoiding overexertion in Myalgic Encephalomyelitis was updated.
A 2 page summary of this text is also now available.
Fatigue Schmatigue was updated, along with the related papers: Energy Schmenergy and If not ‘fatigue’ then.. what?
The M.E. Ability Scale was updated.
An additional modified version of the 'The M.E. Ability Scale' which aligns the percentages on the scale with the relevant ability levels (for the benefit of moderately affected sufferers) was also created.
June 2007
You can now view an 'A Hummingbirds Guide to M.E.' channel on YouTube!
I've only made a few short films about M.E. (and the difference between M.E. and CFS) so far, but there will be more to come over the next few months. Each film is also available in an audio format (as an mp3 file).
Titles available so far include: 'Why 'CFS' is a wastebasket diagnosis' and 'The bogus creation of 'CFS' harms everyone, not just M.E. sufferers.'
Each film is under 10 MB, and around 3 - 6 minutes long. For more information see the Audio and Video page. Happy viewing!
I have made some informal comments about the latest CDC propaganda campaign and some of the ethically and scientifically questionable responses to it by certain 'CFS' advocates, see: M.E. advocacy and 'CFS' advocacy are not the same
A new paper is available: Myalgic Encephalomyelitis is not fatigue, or 'CFS'
This paper 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.
This paper combines information from four or five previous papers on this site into one new paper. It provides a - fully-referenced - brief overview of the most important facts of M.E. (and 'CFS') both medically and politically and so is ideal for distributing to doctors or family members, or to fellow sufferers.
(The paper is just four pages long, plus references.)
May 2007
A new paper is available: What it feels like to have Myalgic Encephalomyelitis: A personal M.E. symptom list and description of M.E.
I put together The ultra-comprehensive Myalgic Encephalomyelitis symptom list in 2004 using references from the world’s leading M.E. experts. For some time however I’ve wanted to create a second M.E. symptom list; one which combines the available research with a detailed personal description of the illness and which might more accurately describe what it really feels like to have M.E.
This new paper is not just another 'list' of symptoms - more than 50 different symptoms are described here in detail along with many of the other characteristics of the illness (for example; the acute onset of M.E, and the way people with M.E. respond to physical and mental activity, sensory input and orthostatic stress).
This is a detailed description of what it really feels like to have M.E.
February 2007
The percentage of the purchase price donated to M.E. research with each art purchase made on this site has been significantly raised!
30% of the total purchase price from all single prints and fully 50% of the total purchase price of any of the special offers on multiple print sets sold on this site go directly to funding Myalgic Encephalomyelitis research projects. 15% of the sale price from all hummingbird paintings will also be donated toward M.E. research, and 30% - 50% from all hummingbird digital prints. (You can see details of my donation history on the About this website page)
Postage is also FREE to anywhere around the world. See the Main Online Gallery and The Hummingbird Gallery for more information and to view the full range of prints and paintings.A new site feature is available: Tell a friend about this website...
This new page contains short template letters which can be cut and pasted to help sufferers more easily spread the word either about the website as a whole, or about separate pages or sections on the site, by email. Knowledge is power!
January 2007
The 'A Hummingbirds Guide' logo is now available on a range of cost-price products or can be downloaded for free so you can print it on your own t-shirts etc.
A variety of other M.E. activism designs are also available. (I make no money whatsoever from any sales. Donations to M.E. research in appreciation of these free designs is encouraged however, for those who are financially able to do so.)
A new feature is available: A CBT/GET Warning Letter
Once you have tried everything to avoid being forced to participate in CBT or GET programs against your will, it might be a good idea to send those who are recommending and/or going to be administering the program/s a warning letter such as this one. This letter politely but 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.
The following papers have been updated:
- Putting Research and Articles on M.E. into Context
- Testing for Myalgic Encephalomyelitis
- Treating M.E. - The Basics (Or 'Help, I have M.E.- what on earth do I do now? Help!!!')
- The misdiagnosis of CFS
December 2006
A new paper is available: 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? This paper looks at both of these issues and also includes a list comparing the symptoms of some of the illnesses commonly misdiagnosed with CFS, with several of the CFS definitions.
There is a new Audio and Video page
This new page features spoken word versions of some of the essays on this site, plus a list of other audio and video resources on M.E. for all those sufferers who prefer audio and video files to text files.
A 2 page summary of the Book Reviews Section can now be downloaded/printed in Word or PDF format.
A brilliant new paper by Dr Byron Hyde is available entitled: The Nightingale Definition of M.E. This paper is a MUST-READ. See the Dr Byron Hyde M.D page for more information and for links.
November 2006
A new topic is available in the 'Research and Articles' section: Anaesthesia and Myalgic Encephalomyelitis
Other new topics available in the 'Research and Articles' section include:
Metabolic Research, General Articles and Research Overviews, M.E. is not defined by 'fatigue', On the supposed role of 'stress' in the causation of M.E., The Outbreaks (and Infectious Nature) of M.E., M.E. Fatalities, Articles sorted by Country and Historical, Political and Medical Overviews
New featured authors include: M.E. Research UK, (MERGE), Research into M.E., (RiME), The 25% M.E. Group, Invest in M.E., and there is also a new Author Overviews section.
The 'Book Reviews' page now includes an extra section entitled: Recommended Myalgic Encephalomyelitis DVD's
October 2006
A new Translations page is available - translators urgently required!
September 2006
This 100 page + resource 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 CBT and GET on M.E. patients – as well as a large number of patient accounts of CBT and GET.
You can direct people to the webpage, and you can also download a copy of the entire 128 page database (or a 30 page summary) in Word or PDF formats and distribute paper copies. I hope the M.E. community will find this a useful resource.
A new paper is available - 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 database.
August 2006
A new paper is available entitled: The effects of CBT and GET on patients with Myalgic Encephalomyelitis
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.?
July 2006
A new text is available: My comments about the current (worrying) state of Australian ME societies (These comments follow, and are relevant to, a recent book review.)
A 'Search this site' tool was added to the homepage.
May 2006
Fatigue Schmatigue was updated.
Because a number of people are merely replacing the politically applied and inaccurate word 'fatigue' with other words which mean pretty much exactly the same thing (tiredness, lack of 'energy' or ' low stamina' or 'exhaustion' among others) and so are just as damaging to M.E. sufferers as the 'f' word, I have added a larger section on M.E. symptomatology to the essay in the hopes that it will explain the issue more clearly.
A second paper which deals with the incorrect terms 'energy' and 'exhaustion' in more detail is also now available (imaginatively) entitled Energy Schmenergy. If not ‘fatigue’ then.. what? is another new paper which discusses several ideas on alternate terminology in more detail.
A list of all the articles, essays (and interview transcripts) available on the site written by myself (Jodi Bassett) is now available on a new 'Articles sorted by Author' page.
The Myths about M.E. lists some of the most common myths about the illness.
April 2006
Myalgic Encephalomyelitis vs Fibromyalgia Fibromyalgia (and GWI, MCS and Lyme disease etc.) and Myalgic Encephalomyelitis are each distinct and unique illnesses and it is vitally important that they are always seen that way for the benefit of all patients involved.
My comments on the CDC's latest 'CFS' press release
The press release unbelievably claims that the CDC has just found 'the first credible evidence that CFS is a biological illness.'
This text also includes additional comments about the CDC/CFIDS Association's 'Faces of CFS' (propaganda) campaign, plus links to articles by other authors on this important topic.
March 2006
The second 'Treating M.E.' section was added to the site:
Treating M.E. - The Basics (Or 'Help, I have M.E.- what on earth do I do now? Help!!!') is an essential guide to some of the basics you NEED to know to live with, cope with and to treat M.E. (or to help your child with M.E.do the same).
A new quotes section is now available:
Quotes on the outbreaks (and infectious nature) of M.E.
A new 'Articles sorted by Author' section is also available featuring the works of the brilliant Dr.Melvin Ramsay M.D.
February, 2006
Testing for Myalgic Encephalomyelitis. is a new text which gives a basic overview of some of the series of tests which can be done to help confirm a suspected M.E. diagnosis (and also contains further information on many other aspects of diagnosis).
While there is as yet no single test which can diagnose the illness, there are a series of tests which can aid diagnosis - despite the many claims made in the media and elsewhere to the contrary.
The 'On so-called 'fatigue' in M.E. quotes' section now contains even more new material. Contributors include some of the worlds leading M.E specialists and advocates and of course M.E. sufferers.
Fatigue may be the main symptom or a major symptom of: depression, idiopathic chronic fatigue, post-viral fatigue states, various fatiguing illnesses, Fibromyalgia, multiple sclerosis and Lyme disease... But it is NOT the defining symptom or feature of Myalgic Encephalomyelitis or M.E. equivalent CFS. There should be enough hard solid evidence in this section now (along with the Fatigue Schmatigue paper) to fully convince anybody of this fact.
January, 2006
I have been interviewed about M.E. on radio for a second time, click here for more information.
Many of the essays on this site have been updated with around 20% new information:
A Million Stories Untold, What is M.E.? M.E: The Medical Facts, Fatigue Schmatigue, Helpy Hints for living with M.E., Helpy Hints for coping with M.E. Emotionally, Treating M.E.and Putting Research and Articles on M.E. into Context
December, 2005
I am currently working on updating all the essays on this site. The first to be completed is The Ultra-comprehensive M.E. Symptom List.
The list now contains around 40% new material, and the 'cognitive and neurological dysfunctions' and 'immune system dysfunctions' and the 'hallmark characteristic of M.E.' sections in particular are all greatly improved. A 2 page summary of the symptom list is also now available: The M.E. Symptom Summary
M.E. Friendship Gear is now available: Lots of people over the years, in different M.E. support groups have commented that they wished they could award medals to particular members sometimes; for when someone shows amazing strength and determination through adversity, or goes out of their way to help others (despite having their own problems) or even 'just' for someone having the mental strength to keep going every day despite living with severe illness. I've always wanted to make such medals, and finally I have! The medal designs are available on a range of cost-price products OR you can download the medal images for FREE and make your own.
October, 2005
September 2005
Lots of new Quotes were added to each of the 5 quotes sections.
A new hummingbird sketch was added to the main virtual Gallery.
August 2005
I just did my very first radio interview about M.E.! Click here to listen to the interview or to read a written transcript of the interview. A
short piece entitled 'Myalgic Encephalomyelitis-related interview trivia' (relevant to anyone who knows somebody who has M.E.) is also available on that page.The
Treating M.E. - Avoiding Overexertion page was addedThe single biggest factor determining recovery and remission from Myalgic Encephalomyelitis at this point - aside from dumb luck - is undoubtedly appropriate rest in the early and/or severe stages of the illness. More information on different treatments, diets and treatments to avoid will be added to this section soon but avoiding over-exertion really is the single greatest treatment there is for Myalgic Encephalomyelitis right now and as such its importance can not be overestimated.
July 2005
A new section was added to the site called 'M.E. - The Medical Facts' as well as a shorter version entitled 'M.E. - A Medical Summary'
It is a reworked version of 'What is M.E.?' but with all the political bits removed, and even more medical facts added. It explains all the medical facts about M.E. in considerable detail - without reference to the dirty politics surrounding the illness - this is a purely medical text. Includes detailed research findings and references, essential reading for anyone with an interest in the illness.
The section on 'What can trigger M.E.?' was updated in both 'A Million Stories Untold' and 'What is M.E.?.'
For some time downloads of many of the essays on this site were only available in Word format, since July they are each now also available in PDF format for those who prefer PDF's. Thank you for the suggestion Adrian!
Articles now available in PDF include:
Hummingbirds, A Million Stories Untold, What is M.E.? M.E: The Medical Facts, The M.E. Symptom List, The M.E. Ability Scale, Fatigue Schmatigue, A Day in the Life, Helpy Hints for living with M.E.
The 'What's new on this site?' section was added to the site thanks to a suggestion I received on the 'Contribute to this site' page. Thank you for the great idea Sean!
Sean also suggested I add the details of my Privacy Policy to the site.
June 2005
All the Word document downloads available on the site were updated. Instead of featuring just plain text with a heading in plain bold text, all downloads now have headers and footers as well as the 'A Hummingbirds Guide to M.E' logo on them.
The new look documents look much more professional and credible than they did previously. Updated documents include:
Hummingbirds, A Million Stories Untold, What is M.E.? M.E: The Medical Facts, The M.E. Symptom List, The M.E. Ability Scale, Fatigue Schmatigue, A Day in the Life, Helpy Hints for living with M.E.
A 3 Part M.E. Ability and Severity Scale was added to the site.
The scale is in three parts because cognitive abilities, physical abilities and symptom severity are often not all be equally affected in each patient. A valuable tool for monitoring the course of your illness over time.
May 2005 - November 2004
After around 9 months of writing and rewriting Fatigue Schmatigue was finally finished and added to the site.
The essay explains how the 'fatigue' construct of ME came into being and why ME and ICD-CFS is NOT a 'fatiguing illness' at all. Did you know, for instance, that 'chronic fatigue' was not associated with being the primary feature of this illness at all until the name 'CFS' was created in 1988? A new must-read article.
The
Helpy Hints section was SERIOUSLY updated.
A range of
Items available for purchase are stickers, bags, a variety of shirts, buttons, magnets, mousepads, journals and coffee mugs. Each item is available in a variety of different designs.
A new Gallery was created on the site -
- All artworks displayed are available for sale, and postage is free to any country.
- To read a published review of the exhibition, click here.
- To take a look at a catalogue before you start browsing, click here
- If you'd like to see some photos of the exhibition and the opening night, click here.
- To read a short explanation of the idea behind the hummingbirds, click here.
