Netflix "Afflicted" - ME included

Netflix has today launched a new series about seven people with chronic illnesses. One of these seven is ME patient Jamison Hill. (And did I spot dr. Jarred Younger in the trailer?)

Here is presentation of the series, interview with Jamison Hill and trailer from #MEAction
Netflix Launches "Afflicted", a docuseries about baffling illnesses

Link to the Netflix-series Afflicted

 

Took a look at the first episode. It's really powerful, Jamison is such a hero for doing this. They include the perspectives of patients, as well as their loved ones/caregivers, and various doctors and researchers, which makes it more interesting (albeit sometimes frustrating).

Very relatable. Be careful if you are in a place where getting emotional will be too much for you right now.

Younger does indeed make an appearance in the trailer

 

Watched the first episode too. Very good, non judgemental filmmaking. Pretty much everyone I speak to who also has ME is higher functioning than me...to see Jamison was sobering. I also thought the couple trying to pursue mold treatment were really sweet.

 

https://twitter.com/user/status/1025517320431591425

 

I thought the series was terrible and sent the wrong message in terms of advocacy. The program consistently conflated psychological and biological problems. I don't know how much Jamison understood about how the content would be presented in final production. The first episode is not bad, but overall the message in the series is a mess. One thing it correctly portrays is that people with medically unexplained illnesses are easy prey for doctors offering out-of-pocket services. Later in the series, Jamison's new doctor claims he doesn't even have ME...so I'm left a bit bewildered. I do not fault Jamison at all, he's been a staunch advocate for people with ME and has been very public about how severe his ME is. I just don't know that this program did his situation justice, nor did it pick up on any of the science...just anecdotes...oh, and that the mind and body are tied together.

 

That is disappointing. I thought the first episode was very promising. Aargh

Why do they always have to go down that road? They start out by saying ‘look how very sick these people are’ and sooner or later always end up at ‘these poor, delusional people, luckily that means it won’t be us some day!’

I’ll probably try another episode or two, but thanks for the warning @Diwi9

 

I haven't watched this but it sounds like it may have done more harm than good. It would have been better if it didn't concentrate on personal lives and treatment attempts so much and focused more on research and attempts to improve the political situation.

 

When does this happen? I didn’t see any mention of psychological stuff in episodes 1 or 2,it would be a shame if the tone changed after this.

Edit: Have now watched a couple more episodes - there are some dissenting voices being thrown in but I can’t help but feel that it’s the documentary’s responsibility to put those in there. They do, after all, exist in real life, and are common among conservative medical thought.

 

This is the problem.

 

https://twitter.com/user/status/1028095677123911682

https://twitter.com/user/status/1028113752439238656
https://twitter.com/user/status/1028177048978841600

https://twitter.com/user/status/1028197141926182914

 

Sounds like she was involved in making the contacts beforehand (Jamison mentioned a friend in the community who recommended his blog to the producers in the #MEAction interview) https://twitter.com/user/status/1028119208503201793

 

Oh, what a pity
I feel so sorry for those participating in the documentary if they had no knowledge or anything to say about the end result. I've only seen first half of first episode and got a bit wary when one of the patients described herself as a psychic. But then I saw a glimpse of Mark Davis saying something about ME and got really excited.

That's one of my worst nightmares to trust and open my heart to tell my story about this disease to a journalist and then end up with an article saying something completely different than what I had tried to get across.

 

I'll add it to my playlist, looking through the episode list though I'm not too enthusiastic about some of the conditions that are being put in the same basket as ME.

 

I think we should be very careful about dismissing the other conditions presented. Even if we don't believe they have found the right diagnosis, we of all people should understand the desperation and fear when something is very wrong with you but you can't figure out what or get any real help.

 

Wow, this has taken an unexpected angle. Thank you @Joh for those twitter posts. I can't believe the degree of disrespect which swings with this. This is just mean. But, you know, with wackos one can do that... *cynic*

I am happy Ron Davis and others want to write about it.

Still, I am a bit speechless as a result of this discrimination/lying/misopathy.

 

Best wishes to anyone involved in this who feels disappointed by it... and anyone not directly involved too!

I've not seen any, so can't really comment

There is a danger with 'personal stories' that they can often be made to fit the preconceptions of whoever is doing the editing. Also, one of the dangers of 'alternative medicine' or unfounded scientific claims being used amongst patients is that it can make people look unreasonable. That's one reason why it's helpful for us to all try to keep picking apart claims about different theories and approaches.

 

As you say these are two separate things, dismissing a condition is not dismissing that the person is ill and suffering and deserving of help and compassion, just that you disagree on the medical condition to which they have attributed the illness. If you genuinely believe the diagnosis is wrong then what is the best way to help ?

There are plenty of less controversial incurable diseases like MS or lupus or dozens others, it's hard to believe that it was an accident that they instead chose so feature ME alongside electromagnetic hypersensitivity which has no scientific basis and is not a recognised medical diagnosis.

 

If you have Netflix you can go to Afflicted and give it a 'thumbs down'. That might help to let them know how people are feeling about the series.

 

Or, if you liked it, a thumbs up