Dialogues for a Neglected Illness video’s will cover a wide variety of topics.
A British film team travels to the Central Valley in California to ask the exercise physiologists at Workwell about the effectiveness of graded exercise therapy (GET) in ME/CFS. Then they turn to the notorious PACE trial.
First Voices – then Dialogues – for a Neglected Illness
Nathalie Boulton and cameraman Josh Biggs – the mother and brother of a woman with long-term ME/CFS – produced the award winning “Voices from the Shadows” in 2011.
The film documented the abuse of five severely ill ME/CFS patients – two of whom ended up dying – by the British medical system. It’s been translated into 8 languages.
The Dialogues Begin: Getting At GET – The “Understanding Graded Exercise Therapy For ME/CFS” Video
The Dialogues will create a resource which patients can use to help their doctors and other health, education and research professionals understand more about this disease and the issues faced.
Eight years later, Boulton and Biggs are back. Funded by the Wellcome Public Engagement Fund, their “Dialogues for a Neglected Illness” project is producing a dozen or so videos on many different aspects of ME/CFS.
The series starts off with a focus on graded exercise therapy or GET – British psychologists’ “gift” to ME/CFS. Graded exercise therapy is exactly like it sounds: it consists of gradually increasing one’s exercise level over time. Its theoretical underpinning is that ME/CFS is deconditioning in disguise and that all one has to do is get moving, rehabilitate your underworked aerobic energy system, and everything will be fine.
People with mild or moderate CFS/ME should be offered GET that includes planned increases in the duration of physical activity. NICE Guidelines
GET, and its partner, CBT (cognitive behavior therapy), have dominated the treatment approach to ME/CFS in the U.K. and much of Europe for decades. GET has become more than just a therapy; it’s become a belief system, and when you’re fighting a belief system, you have to fight it with something more powerful: facts.
Deconditioning didn’t cause the problem and exercise won’t solve it. Staci Stevens, exercise physiologist – from the video
Enter Workwell – the most experienced ME/CFS exercise physiologists in the world. They’re not psychologists – with what they think is a good idea. Professionals steeped in their science, they’re the perfect people to objectively assess the effects of exercise, and therefore GET, on ME/CFS.
So when Chris Snell PhD states in the video that recommendations for “Graded exercise can be very, very dangerous” for people with ME/CFS, he’s not stating an opinion: he’s stating a fact based on scientific data. That data shows that the very aerobic energy system that GET is trying to rehabilitate is broken in ME/CFS. Push that system harder and it gets worse, not better. That’s physiology – not a belief system – and it’s that emphasis on science that makes these beautifully shot videos so darn convincing. No need to manipulate the data (see the PACE trial below): just follow the data.
Find out more about safe ways to “exercise” from Workwell
- In “Opposition to Graded Exercise Therapy” – Workwell informs health care providers of the dangers of graded exercise therapy – (Give this one to your doctor)
- How Physical Therapists are Getting it About ME/CFS – (Give this one to your physical therapist)
- Medbridge: Continuing Education for Rehabilitation specialists – Workwell’s Online MedBridge course provides information on diagnosis and management – (Have your physical therapist do the online course)
- A Realistic Approach to Exercise for CFS Patients – the safe way to exercise in ME/CFS – (Good for patients and doctors)
- Improvement! How one person significantly improved using Workwell’s exercise program – (Get inspired!)
Workwell – Action CIND – Webinar Coming Up
Hosted by Action CIND, a Canadian advocacy group, the Workwell team will provide an overview of their recent findings, highlight how their 2-day CPET tests can be used to better understand ME/CFS, and provide a guide for safe activity levels in webinar on Wednesday, December 11 | 11:00 am PST/2:00 pm EST.
- Register here: https://zoom.us/webinar/register/WN_dK6TTtF9QTeDoplCfhC-aA
Part Two: The PACE Trial
The 641 person, $7.4 million (today’s dollars) 2011 PACE trial remains the biggest clinical trial or research effort ever undertaken in ME/CFS – and the most controversial. Designed by U.K. psychologists and funded by the U.K. government in an effort to provide definitive proof that CBT/GET is an effective therapy for ME/CFS, the trial instead has provided a stark example of how medical research can go wrong. Controversial changes to the trial’s criteria as it was underway greatly enhanced the trial’s results. A re-analysis using the original criteria found meager results indeed.
Despite the controversy, the huge trial has had a major impact on the field and validated for many the efficacy of CBT/GET.
Confirmation bias: researchers design a trial to confirm their hypothesis
Future dialogues will focus on diagnosis, management and treatment, severe M.E. patients and the broader historical, social, etc. contexts of the disease.
- Learn more about the Dialogues for a Neglected Illness project
Help us keep spreading the news.
BIG (little) Donation Drive Update
Thanks to the 40 people who have contributed over $3,000 to HR’s end of the year fundraising drive! We’ve got some big blogs coming up! Please support HR in getting out in-depth information on ME/CFS and FM.
Hi Cort, I’ve just made a donation to your end of year funds drive.
I wish it was more but the conversion from Australian dollars to US isn’t very healthy at the moment. The money comes out of my Disability Support Pension which any Aussie will tell you is pitifully low. If I wasn’t living at someone else’s house I wouldn’t be able to make rent payments and still afford to eat.
I’m not writing this to draw attention to my lack of funds but rather to inspire others to give whatever they can.
Your collation and succinct reporting of current research and treatment options is a vital part of my life. It keeps me grounded and gives me hope for the future.
Thank you for the many years you have devoted to us your fellow ME/CFS sufferers.
Cheers,
Gail
I am humbled Gail! Thanks so much. Every bit counts. There are people who give small amounts every year. Seeing something come in from the same person – no matter the amount – is just so gratifying.
I will do my best to keep it up and improve the work.
We have something coming up that I think you will like! 🙂
Thanks again,
Cort
I completely agree with Gail (thanks Gail!). Thank you so much Cort! My family and I will be donating as well. Your work and efforts are unparalleled and help so many. I personally learn so much and try to use your information with doctors to find treatments or innovations that may possibly help. And it’s mostly because of you!
I’ve just watched Voices from the Shadows. I knew things were bad but the film features scenes that are truly shocking. I do hope the abusers are brought to account for their actions.
If I were a member of the medical profession I would hang my head in shame at the behaviour of my colleagues.
I just can’t see how abusing very unwell children and adults in this way, can be legal.
I can feel my blood boiling…
Frightening.
The arrogance and ignorance of parts of the medical profession are not going to know what hit them, when their extraordinary behaviour is revealed. Human beings, with too much power, are capable of being very nasty…
What a brilliant film. I will obviously need to brace myself for the rest of the series.
i am a 69 year male and have ME/CFS for almost 4 years It started off mild .most days but looking i might have had this disease all my life .through the years most times was mild with moderate only rarely until my stroke 4 years 2 months ago too severe almost every day. my doctors keep telling me they don’t have time too do the research there needs more simple letters i could take too my doctors too spark there interest in ME/CFS i would love too takes long walks with my dog a beautiful husky MALIA who loves To meet people and dogs she is a lovebug .Thats all i want before i die,too make her happy THANK YOU ALAN AND MALIA