Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

Absolutely riveting and heart shattering. Every GP needs to see this. Here in Canada there really aren't doctors of the calibre interviewed. I noted Dr Nacul is now in Vancouver, however. But in Montreal there is no one of this experience. Dr Moreau is a researcher not a physician. Canada is a vast country and Vancouver is on the other side of the continent.

With documentations like this, what keeps plaguing me is why governments aren't making it more of priority to put money into research and treatment. I noted that no one spoke about treatment/research going forward. But that wasn't the purpose of this film. I also found it confirmed that everything we have been going through others also suffer in a very similar way. I cannot endure that medical research has not done more for all these young people, in terms of trying to find out what causes this illness and how to reverse it. (It was very unsettling to hear the physician say that the severe cannot generally come out of their hell. Dr. Hanson, however, told me that she has seen reversals. )

 

Link to the new video on the Dialogues site, http://www.dialogues-mecfs.co.uk/films/severeme/

 

New Facebook post from the team, including a plea for suitable photos of male patients.

Code:

https://www.facebook.com/VoicesfromtheShadows/posts/3065768880176621

 

Very well-made. There are so few glimpses into the severe ends of this disease. Its disappearance by the fabrication of CFS/MUS/FND/WTF is one of the most egregious acts of violence perpetrated on this population. It's nothing short of criminal to enable this and there will need to be serious discussions over charges of negligent homicides and malpractice leading to preventable deaths, on top of needless amplification of suffering, of which there are simply too many to even count.

The only issue is really who to blame, when the entire system shares equal blame. Whatever really, as long as this cycle of cruel violence ends. I don't even care who gets blamed as long as this mindless sacrifice of human life on the altar of psychosomatic ideology ceases and its reign of terror is over.

 

Very poignant.

Does anyone know if there are plans to distribute this film through various social media?
Or can it only be accessed through the linked site?

 

My initial post has Twitter and Facebook links that can be used to share it.

Here are links on Pinterest and Tumblr:
https://www.pinterest.ie/pin/174584923043550850

 

Not just male patients Andy, any showing a hospital environment or travel to or from hospital could be very useful.

 

Thanks for the reply @Tom Kindlon

Sharing on the platforms you mentioned is always a good thing but I was thinking of (and I have no skill in this area so am having trouble being specific so apologies for that) sharing on advocacy sites, online news sites or medical blogs etc. Places that are outside or have access outside the immediate community.

It's a really good video and along with some other recent videos shared on the forum they make a powerful statement.

 

Just in terms of educating doctors with it:
With two of the earlier videos from this group, we in the Irish ME/CFS Association and the Irish ME Trust applied for education credits for an educational event for GPs (which also included a live speaker and a Q&A session). The credits were obtained from the Irish College of General Practitioners for an event last year. We had planned to do four similar events in Ireland this year in June before we had to cancel them due to Covid-19.

We are hoping to do similar events with similar content online now.

So that is one way such videos might be used.

 

Some of the videos are being incorporated into medical education material

Some of the Dialogues videos will be used by others working on online medical education...

 

https://www.meassociation.org.uk/20...y-natalie-boulton-and-josh-biggs-27-may-2020/

Nice overview by the ME Association of the various films that have so far been released as part of this project, with lots of photos and links.

 

I really like this collection of videos and hope they are shared and used widely.

 

Second new video - "Symptoms and Management of Very Severe ME/CFS" Josh and I have just put this up on the same web-page for "Severe and Very Severe ME/CFS" videos. http://www.dialogues-mecfs.co.uk/films/severeme/

 

Excellent. Again. The whole series is just excellent.

It's nice to see faces to familiar names. The absurdity of this being known and documented and happening alongside the descent into madness in Norway and Denmark is frankly incredible.

I've only had a few short episodes of severe symptoms. They terrify me to this day. It's a level of pain that is hard to describe, it isn't so much elevated as total, as if every nerve in the body was trashing around overexcited. Neglecting this on purpose is absolutely criminal.

I don't know when there will be a tipping point but if this is not the biggest scandal in the history of medicine I don't know what is. In all the other scandals you can find business interests or other non-medical circumstances pushing things. Not here. This failure is 100% on medicine, there are no extraordinary circumstances, in fact the circumstances make it all worse, slow and methodical, ruthless trampling over vulnerable people begging for help for a mediocre ideology.

A few years ago, Wessely said that whatever the details, he feels they did more good than harm. He was clearly only talking about himself and how it benefited him.

 

Our video “Severe and Very Severe ME/CFS” is included as the 'Summary Video' in “Healthcare”s New proposed Special Issue: "ME/CFS – the Severely and Very Severely Affected”.
Guest editors for this 'Special Issue' - Prof Kenneth Friedman, Dr Lucinda Bateman and Prof Kenny De Meirleir https://www.mdpi.com/…/healthca…/special_issues/me_cfs_issue

The Introduction says “Up to this point in time, all literature and case definitions of ME/CFS have excluded severely and very severely affected patients, and diagnosis, patient management, and case definitions have been based on the ambulatory ME/CFS patient. Although never formally studied, it is estimated that twenty-five percent of ME/CFS patients are either severely or very severely affected. What other disease’s diagnosis, patient care, and case definition exclude the most severely ill twenty-five percent?”

The Dialogues page for Severe & Very Severe ME/CFS will contain three videos -
1. Severe and Very Severe ME/CFS,
2. Symptoms and Management of Very Severe ME/CFS
3. Hospital Admission for Severely Affected ME/CFS Patients.

 

They just mention the first one by name, but their link takes you to the Dialogues page where two are currently and all three will be, in a week or two... and it might encourage people to watch some of the other videos too.

 

Thank you for doing this video. I just watched half of it.

I just wanted to add a note for people thinking of watching it, who especially have severe ME, (or even just ME in general), it has pictures of some people who have died from ME also as well as discussion interspersed with upsetting pictures of some very frightening symptoms including some which led to fatalities. I think it’s good for severe ME people to know this before watching because I had to stop watching halfway through, even with skipping large chunks of it, as it became very distressing to watch & I became frightened of what could happen as my condition is close to some of these people.

It’s important that this is shown though to the wider society.

So just a note of caution to people with ME who might struggle with the images / things spoken about.

 

Yeah, I put "Discusses various distressing topics" when sharing the videos e.g.
https://twitter.com/user/status/1265286597701926912

https://twitter.com/user/status/1267507696414195712

 

We've just put up the third Severe ME/CFS video: Hospital Admissions, Issues and alternatives for severely ill ME/CFS patients. https://www.dialogues-mecfs.co.uk/films/severeme/ Although I made a twitter account for the project it was suspended before I tried to use it and although I have asked asked repeatedly to have it unsuspended it hasn't happened, so I would be glad if people .. @Tom Kindlon? publicise it - maybe after this evening as Josh is still doing a bit of tidying up on the website. Thanks to people who have helped with photos and especially to @Graham, who kept me at it long after I would happily have given up! It was worth it in the end though.