You can watch this video for free on Vimeo.
“Voices from the Shadows” shows the brave and sometimes heartrending stories of five ME patients and their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and Prof Malcolm Hooper. It was filmed and edited between 2009 and 2011 by the brother and mother of an ME patient in the UK. The film shows the devastating consequences that occur when patients are disbelieved and the illness is misunderstood. Severe and lasting relapse occurs when patients are given inappropriate psychological or behavioural management: management that ignores the reality of this physical illness and the severe relapse or exacerbation of symptoms that can be caused by increased physical or mental activity, over exposure to stimuli and by further infections.
You can watch this video on Youtube.
“I Remember Me” is the first full-length documentary to explore the controversial and mysterious history of chronic fatigue syndrome, an illness that, according to the CDC, is now forty times greater in prevalence than previously estimated. Once dismissed as Yuppie Flu, this mysterious syndrome, for which there is not yet a universally acknowledged cause or cure, has prompted fierce debate within the medical community.
“Invisible, the Movie”
Available on Amazon.
INVISIBLE gives voice to a select group of Vermonters who are gravely ill, and until now, have been out of sight. You will hear first person accounts from your Vermont neighbors as they talk about living with ME/Chronic Fatigue Syndrome, CFIDS and Fibromyalgia diseases with a thousand names and no known cause or cure. You will hear the devastating impact this illness wields, not only for those who suffer the symptoms, but for those who are left trying to understand what their loved ones are experiencing. This is a film for millions of people around the globe from your Vermont neighbors around the corner…tenacious Vermont neighbors who struggle against unimaginable odds to make their voices heard. They are just like us…except they got sick… …and they are tired of being INVISIBLE.
You can watch this film for free on YouTube.
Mom Needs To Lie Down: The years and live slept away by ME/CFS is an informational video about Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. ME/CFS causes debilitating fatigue that is not improved with rest. Over 400,000 Canadians suffer from ME/CFS yet many in the medical profession refuse to acknowledge it.
“Living Hell: The Real World of Chronic Fatigue Syndrome”
You can watch this video on Kaazoom’s blog.
This video was made in 1993 and documents first the history of the disease from the time of the outbreak at Lake Tahoe, and talks to the doctors and patients involved.
You can watch this video on Youtube.
“My experience with M.E. may not be precisely identical to that of anyone else in terms of the sequence, nature and severity of the events — however, I believe it will be familiar to many people. Although my symptoms were “severe,” many with M.E. experience an intensity of impairment that is considerably worse. I would hardly have thought that possible at the time I became ill.”
“CFS and the CDC’s Failure to Respond: Primetime Live (1996)”
You can watch this video on YouTube.
This is a Primetime Live news piece on chronic fatigue syndrome (CFS) from 1996. It covers the sudden U.S. outbreaks in the 1980s and the CDC’s lack of response. Discussion includes Dr. Paul Cheney, Dr. Daniel Peterson, Dr. David Bell, Elaine DeFreitas, Hillary Johnson, and Osler’s web.
“Prologue … ME/CFS-2021. NICE – a turning point becomes a debacle”
Features: Prof Jonathan Edwards, Prof Brian Hughes, Tom Kindlon, Caroline Kingdon, Dr Nina Muirhead, Dr Luis Nacul, Dr Charles Shepherd, Dr Chris Snell, Dr Mark VanNess
LEFT OUT – Full Documentary (Subtitled)
A visual, brutally honest story on life with ME/CFS and new research (English & German subtitles). You can watch for free on Youtube.
Living with Chronic Fatigue Syndrome – Germany
An investigation into ME/CFS focusing on the experiences of three individuals suffering from the illness, with contributions from European researchers.
Dialogues for a neglected illness: Patients’ Accounts of Symptoms – UK
A collection of eight videos from the UK, on different aspects of people’s experiences with ME/CFS.
The Tangled Story of ME/CFS: Controversy, Denigration and Ignorance.
Hope to our Hands: The Hidden Story of ME/CFS in Japan
A moving documentary of those in Japan living with ME/CFS who are struggling to receive acknowledgement, medical care and support. Available worldwide, pay-per-view streaming or download on VIMEO.
Award-winning documentary, Unrest, is a personal journey from patient to storyteller that lifts the veil on the hidden world of ME/CFS and documents the beginnings of the global #MillionsMissing movement. Available on DVD, Netflix and worldwide on pay-per-view streaming. Subtitled in 30 languages. Released 2017.
What happens when you have a disease doctors can’t diagnose?
Ryan Prior, now a CNN journalist, films a documentary that explores the experiences of himself and others in a medical system that has failed people with ME/CFS; and speaks with the clinicians and researchers who are working to change that. Available on Amazon.
The Last Great Medical Cover Up
A UK documentary about the challenges faced by people living with ME, explored through interviews with six people.
Invisible Illness- Stories of Chronic Fatigue Syndrome
A short documentary from the US about three people with ME/CFS, including Whitney Dafoe, whose father, Ron Davis, is credited with mapping the human genome and is now leading major research into ME/CFS.
Anil van der Zee, a former ballet dancer now bedbound with ME/CFS, has made 20 videos about the disease.
Mysterious Illness: Living with ME/CFS
Duration: 43 mins: Youtube
“Millions of people worldwide suffer from Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis (ME/CFS), an extreme and persistent exhaustion for which there is no cure. An investigation into the little known illness focusing on the experiences of three individuals suffering from CFS: Ralf, Sonja and Aileen.”
Lots of videos on Tom Kindlon’s Pinterest page.
Interviews
ME/CFS Alert is an interview series produced by journalist Llewellyn King.
Science for Patients/Wetenschap voor Patiënten
Science for Patients is a series of interviews with noted ME/CFS physicians and researchers.
Conferences and Seminars
Presentations from the “Exercise and ME/CFS” evening in Bristol on Feb 5th at the Watershed – with Prof Mark VanNess, Dr Nigel Speight and Erinna Bowman following a screening of “Voices from the Shadows”
http://voicesfromtheshadowsfilm.co.uk/exercise-mecfs-event/
“Compassionate Use Treatment of Chronic Fatigue Syndrome using both chemical and probiotic (MAF 314) forms of GcMAF.” Presented by Paul Cheney, MD PHD March 22, 2013
Part 1 http://www.youtube.com/watch?v=dHO6-q6WGT4
Part 2 https://www.youtube.com/watch?v=IWwZQUgaRJU
Part 3 Q&A http://www.youtube.com/watch?v=cB2gm6FRUIE
ME/CFS Conference DVDs November 2013 Mt. Sinai New York
“CFS: Is Oxygen the Problem? A Four Part Treatment Protocol” presented on April 25th 2009 in Fairfax, VA, by Dr. Cheney
http://www.dfwcfids.org/publications.shtml
State of Knowledge Workshop, 2011, John Chia speaks about enteroviruses
https://www.youtube.com/watch?v=obHtCwhg3-0
Stanford’s Dr. Jose Montoya on Chronic Fatigue Syndrome
https://www.youtube.com/watch?v=Riybtt6SChU
Dr. Komaroff Summary of IACFS/ME Conference, 2014
https://www.youtube.com/watch?v=nyyjRdbvPj0
RECOVER: Researching Covid to Enhance Recovery / YouTube. June 2022
Transcript of Q&A: https://recovercovid.org/docs/R3.Seminar.3.4-12-2022.pdf
US Federal Government Meetings
Drug Development for CFS and ME: FDA Public Workshop
Day One: Part 1
Day One: Part 2
Day One: Part 3
Day Two: Part 1
Day Two: Part 2
Day Two: Part 3
Day Two: Part 4
Day Two: Part 5
IOM Diagnostic Criteria for ME/CFS Public Meeting January 27, 2014
Short Clips and Testimonies
“My life with CFS”
http://www.youtube.com/watch?v=YemwVBeYVKM
CFS/ME CDC “Missing My Life”
http://www.youtube.com/watch?v=bCUvygbYdXs
A Short CFS Documentary
http://www.youtube.com/watch?v=dtWzp_7Z034&feature=related
CFS/ME: The Torturous Disease
https://www.youtube.com/watch?v=IOflARSgNnE
How Does Myalgic Encepthalomyelitis Affect My Life?
http://www.youtube.com/watch?v=zQ0FyO2c1tU&feature=related
Living with Severe ME/CFS: Laurel’s 2009 CFS Testimony to CFSAC
https://www.youtube.com/watch?v=LvweCk44WHs
M.E. awareness
https://www.youtube.com/watch?v=A5tX_RbFjvo
M.E. / Chronic Fatigue Syndrome – Sleepydust Video