A Hummingbirds' Guide to M.E.

Information on the neurological disease Myalgic Encephalomyelitis

Original M.E. audio and video

In 2007, the first 'A Hummingbirds Guide' M.E. advocacy videos were created.

Each of the short films is also available in an mp3 audio format.

Video and audio pieces available so far include:

Why 'CFS' is a wastebasket diagnosis  03:24
 
This video explains why every diagnosis of 'CFS' based on any of the CFS definitions is ALWAYS a misdiagnosis and why the bogus disease category of 'CFS' must be abandoned.

'CFS' harms everyone, not just M.E. sufferers  03:25
 
This video explains why it isn't just people with M.E. who are harmed by the creation of the bogus disease category of 'CFS' and why it harms everyone misdiagnosed with CFS.

(Note that this is not about mere terminology, it is about the DEFINITIONS of 'CFS' not defining any distinct disease, including M.E., that is why every diagnosis of CFS is a MISdiagnosis.)

How does Myalgic Encephalomyelitis affect my life?  06:17
 
This video looks at some of the ways that my life is affected by severe Myalgic Encephalomyelitis. (None of them involving mere 'fatigue'!)

M.E. is a distinct organic neurological disease which occurs in epidemic and sporadic forms. M.E. can be extremely disabling; 25% of people with M.E. are severely affected and wheelchair-bound, house-bound and/or bed-bound - but an additional level of suffering also comes from the (politically and financially motivated) confusion between M.E. and the fictional disease category of 'CFS.'

Why everyone with Myalgic Encephalomyelitis needs a computer  05:18
 
This video explains some of the reasons why everyone with Myalgic Encephalomyelitis needs a computer (with access to the internet).
 
These comments would all no doubt apply equally to people with comparable illnesses to M.E., both politically and medically.

Myalgic Encephalomyelitis is not the same thing as 'CFS' (or ME/CFS, CFS/ME, ME-CFS, CFIDS or Myalgic 'Encephalopathy'). The decades of systemic abuse and neglect of the million or more children and adults with M.E. worldwide has to stop. It is grossly unscientific, unethical and inhuman.

While there IS a lot of good information available about M.E. offline, it is very often only online that people with M.E. (and the parents of children with M.E.) learn of its existence. For so many people with M.E., the internet is not just a vital source of legitimate political and medical information about their illness; but it often provides their only source of support as well, and/or even their primary (or virtually only) method of communication.

Problems with 'our' M.E. (or CFS, CFIDS or ME/CFS) advocacy groups 04:32

Unfortunately, while many advocacy groups started out doing excellent work to improve things for M.E. sufferers, today this is no longer true in most cases.  So many of these groups which started out determined to fight against the ‘fatigue’ and ‘CFS’ psychobabble, and all the other financially and politically motivated propaganda, and now actively SUPPORTING it.

But what is so maddening is that these groups are not only not helping people with M.E., they are also harming all those people misdiagnosed with ‘CFS’ to a similar degree. They help NOBODY. Things are being run by sheep and wolves in sheep's clothing...

These comments do not just apply to a few rogue groups, unfortunately. They apply to almost all of them. We must fight to get these groups closed down, or at the very least these groups and individuals must be stopped from incorrectly and misleadingly claiming that they speak for (and provide facts on) authentic Myalgic Encephalomyelitis; as is happening so often now.

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.

  • View this video on YouTube (Under 4 MB)
  • Download/listen to an audio version of this piece (3 MB mp3)
  • Read the text version at: Problems with 'our' M.E. (or CFS, CFIDS or ME/CFS) advocacy groups

    A symptom list: Myalgic Encephalomyelitis  08:55

    The summary of the symptom list is now available as an animated video.

    This video is voiced by Lyn Bassett.

  • View this video on YouTube (Under 12 MB)
  • Download/listen to an audio version of this piece (6 MB mp3)
  • Read the text version at: The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List.

    •

    Some facts about Myalgic Encephalomyelitis (and me) 04:40 NEW!

    A brief description of some basic facts about M.E. and my experience with having M.E. for the last 13 years.

    What getting Myalgic Encephalomyelitis feels like (to me) 07:24 NEW!

    Some brief comments on what it feels like to get M.E. This video also highlights the importance of avoiding overexertion if you have M.E.

    Treating Myalgic Encephalomyelitis: The basics 07:37 and 06:33 NEW!

    Some of the basics of how to live with, cope with and treat M.E.

    Testing for Myalgic Encephalomyelitis  09:55 NEW!

    The summary of 'Testing for M.E. is now available as a video. M.E. is a distinct, recognisable disease entity that is not difficult to diagnose and can in fact be diagnosed relatively early in the course of the disease (within just a few weeks) – providing that the physician has some experience with the illness.

    Although there is as yet no single test which can be used to diagnose M.E. there are (as with Lupus and multiple sclerosis and ovarian cancer and many other illnesses) a series of tests which can confirm a suspected M.E. diagnosis. Virtually every M.E. patient will also have various abnormalities visible on physical exam. If all tests are normal, if specific abnormalities are not seen on certain of these tests (eg. brain scans), then a diagnosis of M.E. cannot be correct

    M.E. is not medically unexplained, nor a problem of mere ‘fatigue’ – M.E. is not the same thing as ‘chronic fatigue’ or ‘CFS.’

    A new version of this video is now available. It features an alternate ending and improved sound quality.

  • View version 2 of this video on YouTube (Under 13 MB)
  • View the original version of this video on YouTube (Under 13 MB)
  • Download/listen to an audio version of this piece (8.1 MB mp3)

    Read the text version at: Testing for Myalgic Encephalomyelitis 

    More M.E. advocacy films will be coming soon. If you'd like to be notified by email as soon as any new films are added, sign up for the site's e-newsletter.

    • Radio interviews with the author

    Interview 1 The first radio interview was on Triple J Radio Australia, on Steve Cannane's half-hour current affairs show Hack on August 22nd, 2005. From the Hack website:

    'Jodi Bassett on M.E. - In Bed for Nine Years  Jodi Bassett is 29 and she suffers from M.E. - Myalgic Encephalomyelitis. Jodi says M.E. has got nothing to do with fatigue. To find out more information head to Jodi's website on M.E. at www.ahummingbirdsguide.com '

    Listen to Jodi Bassett on M.E (mp3, 6.20MB)

    If that link doesn't work, try this one. (mp3, 6.20MB)

    A written Transcript of the interview is also available on this site.

    I have also put together a short piece entitled 'Myalgic Encephalomyelitis-related interview trivia'  (relevant to anyone who knows somebody who has M.E.)

    Interview 2 The second interview was on ABC Local Radio (broadcast Australia-wide), on a new year's eve special hosted by Steve Cannane on December 31st, 2005.

    To listen to the interview (or to download it), click here (mp3, 5.20MB)

    A written Transcript of the interview is also available on this site.

    Spoken word files for disabled M.E. sufferers

    While many M.E. sufferers can read a small amount but really struggle with audio input, a significant number have the opposite problem and do much better with audio input rather than the written word and so there is a real need for information on M.E. to be available in audio format.

    Note: The following spoken word recordings have been created specifically for quite ill M.E. sufferers, rather than the general public.

    See the audio files listed above in the 'Audio and Video' section.

    Right-click on the file link to save a copy of the file to your computer. Click on 'Save Target As'

    Left-click on the file link to open the file to listen to it (save the file afterwards if you wish by clicking on 'File' and then 'Save As' or similar)

    If you'd like to be notified by email when new mp3's are added, simply sign up for the site's e-newsletter.

    See the section below for some technical information about mp3 files.

    Technical information...

    To play mp3 files on your computer, you may like to download the free version of Realplayer which will be able to play these files. Read about this program and download it here or if that doesn't work, here.

    If you want to listen to mp3 files away from your computer you'll need:

    • A portable mp3 player (you can get good cheap ones for under 30$ - try eBay)
    • A CD player that plays mp3 CD's (and a program and disc burner on your computer that lets you burn mp3 files to CD. The paid version of the Realplayer program can do this, among many others)

     

    If you have a computer that can burn CD's, but you don't have a mp3 compatible player to play them on, you could also download a file converter such as this one, or the paid version of Realplayer, or any from this list. Then you could download the mp3s from this site, convert them to wav format on your computer with the free software, then burn your CD-R CD which will play in any CD-R compatible player!

    If you can't burn CD's yourself, maybe you could ask a friend or family member if they'll do it for you. Or a M.E. group could redistribute lots of copies of the CD (in mp3 or wav format) to members; Just like all the text files on the site, these audio files may also be freely redistributed provided it is not for profit and they are unaltered.

    More information on M.E. in audio or video format

    More information on M.E. in audio or video format, from other advocates:

    Criona Wilson talks about Sophia and M.E. on YouTube

    The Heart of the Matter; A lecture by Dr Paul Cheney

    See the Dr Cheney page on this site for:

    • Purchasing details for the double DVD set (from the DFW group)
    • Links to view the entire 3 hour lecture for free online (if you have a broadband Internet connection) on the MESA website
    • To find out more about the DVD and the different sections available on it
    • To read Dr Cheney's introductory paper on this topic 'The Heart of the Matter'
    • To read a summary of some of the main points of this DVD (written by Margaret Williams)
    • To read other papers by Dr Cheney

    Invest In M.E. 2006 Conference DVD

    Includes lectures by Professor Hooper, and Dr Byron Hyde MD. and many more.

    Read a short review of the DVD

    Read more about the conference here. Purchase the DVD here.

    Professor Hooper's lecture "Engaging with M.E.' is now available for free online thanks to Gordon D McHendry. Click here.

    Greg Crowhurst's video diary

    Greg Crowhurst is a carer for his wife with severe M.E. He says, 'I am compiling a carer's diary, trying to show the reality and the issues of caring for someone with  severe M.E.' Available on Youtube.

    More M.E. videos by M.E. sufferers are also available on YouTube, see:

    M.E. Articles, Research and Books

    Research topics:  General articles and research overviews, Immune system research, Viral research, Cardiac research, Exercise research, Muscle research, Metabolic research, Neurological and cognitive research, Genetic research, Neuroendocrine research, and Miscellaneous research.

    Article topics: The definitions of M.E., On 'fatigue', CBT, GET and the unscientific 'behavioural' paradigm of M.E., On 'stress', M.E. outbreaks, On the name Myalgic Encephalomyelitis, M.E. and other illnesses, Children with M.E., The severity of M.E., M.E. fatalities, Activism articles, Articles sorted by author, Articles sorted by country, Information in audio or video format and Historical, political and medical overviews.

    Read Putting research and articles into context

    On this page: Information in audio or video format page 1 of 1