Netflix "Afflicted" - ME included

I feel so sorry for people who get taken in by any of the many forms of quackery around. It's so unfair what it can do to people. When sick people are desperate to get better, or even just desperate to understand what's happening to them, misleading medical claims can have such a distorting impact on someone's identity. We really need to try to train one another up to be better at dealing with uncertainty and acknowledging the limits of our knowledge. Realising we don't understand something is so much better than pretending we do. There should also be more of a price to pay for those who are misleading others.
 
Esther12 said:
When sick people are desperate to get better, or even just desperate to understand what's happening to them, misleading medical claims can have such a distorting impact on someone's identity.
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I agree. What this film brings home to me is the manipulation of a situation where a group of people have an illness with no known mechanism.

The implication is that if people have implausible ideas about their illness the illness is caused by the implausible ideas. But people with incurable cancer and arthritis very often have just as implausible ideas about their illness and nobody thinks that. They are treated with sympathy, if also as naturally gullible. The reason why is that their illness is very obviously caused by something medical science does understand. And if nobody has clue then surely implausible ideas are more likely to take hold anyway. So the obvious conclusion is that it is the other way around. If you have a completely baffling illness that situation is likely to give rise to implausible ideas.

And pretty much all these ideas are fed to desperate people by fringe practitioners, or quite often mainstream professionals who should know better.
 
It sounds like a completely different series could be made from all the stuff that was filmed and never made the cut.

I feel so sad for Jamison, Jake and the other victims of this travesty. I agree that the best thing we can do is to reach out to those on social media who were in the series and misrepresented and offer our support.

Could a journalist be persuaded to write an article based on interviews with the participants about what the series missed out and the effect of the mis-telling of their story on the participants? And would it get published?
 
Only slightly relevant to this thread, but I was just reading reviews for some quacky stem cell therapy centre, with a number of MS patients praising them, eg:

I had stem cell done in 2016 for Multiple Sclerosis at Stemedix. I had recently spent a few months at the Shepherd Center and was in and out of a wheelchair prior to coming to see Dr. Brown. Most days I could not walk, I needed help to do basic functions and was on a huge bag full of pills to try and manage my symptoms. Stem Cell was a game changer for me! It is now 2018 and I have not had a relapse in 2 years (prior to stem cell I was averaging 3-4 relapses a month), my seizures are way down (I've had one in 6 months versus having 2 a day prior to stem cell). My wheelchair is in the basement gathering dust!! I feel and operate like a brand new person. And because of the benefits of stem cells, I am now off of three meds I used to need every day and two other meds I was able to cut the dosage in half. Not only have I regained my life and functionality back, I don't need near as much medicine to help keep my MS stable.
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https://www.google.com/maps/place/S...27fdd653!8m2!3d27.889626!4d-82.666144!9m1!1b1

Who knows what is going on with different people?
 
I know someone who crowd-funded to do stem cell therapy. Initial diagnosis was ME but they now say they have Lyme based on a private test. They are claiming to have been helped a lot but I remain to be convinced: person was previously working nearly full-time but I’m not sure they’re working now.
 
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recent tv program featured a man who had stem cell therapy for Crohns; it 'cured' him to start with but the Crohns came back after two years; the main benefit was he was previously unresponsive to medication for Crohns, but now it has started to work again.
 
Jonathan Edwards said:
The implication is that if people have implausible ideas about their illness the illness is caused by the implausible ideas. But people with incurable cancer and arthritis very often have just as implausible ideas about their illness and nobody thinks that. They are treated with sympathy, if also as naturally gullible. The reason why is that their illness is very obviously caused by something medical science does understand. And if nobody has clue then surely implausible ideas are more likely to take hold anyway. So the obvious conclusion is that it is the other way around. If you have a completely baffling illness that situation is likely to give rise to implausible ideas.
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The people who promote the idea that implausible ideas are causing the illness contribute to creating the circumstances that make patients susceptible to implausible ideas. If these patients were taken seriously by medicine they would not be driven into the arms of quacks as much. But medics are taught to avoid taking patients seriously because it could create illness beliefs.
 
Good summary of the problematic aspects with "Afflicted" from Paige Wyant and The Mighty

The Mighty: Why the Netflix Docuseries "Afflicted" Is Harmful for the chronic Illness Community

The article sums up the aspects under these sub headlines:
1. "Afflicted" makes a game out of guessing whether these people's illnesses are real or "all in their head"
2. The series puts a heavy focus in the "mind-body connection", which creates the impression that the illnesses featured are psychosomatic or largely psychiatric in origin or nature
3. There was a glaring lack of science and research regarding the conditions featured
4. The series placed far too much emphasis on the doubts of family and friends
5. From what I could see as a viewer, the producers and crew seemed very disrespectful and dismissive of the people with illnesses

If you haven’t watched “Afflicted,” I do not recommend it – whether you’re healthy or chronically ill. It is not a responsible representation of the chronic illness community and, in my opinion, does a lot more harm than good. Going forward, I hope filmmakers and anyone involved in creating media about illness or disability does better. Employ people with health issues. Ask those of us with health issues what type of content we would like to see. And treat people, sick or not, with the basic compassion, respect and dignity we all deserve. We need to do better than “Afflicted.”
 
I watched this last night (saw it flagged up on Twitter).

Jake is clearly still very sick, and, contrary to the message conveyed in Afflicted, is having a lot of orthodox medical investigations which are finding things wrong like low red and white blood cell counts - so low that the doctors are tracking this in case of cancer. He has been tested multiple times for Lyme and come up negative. He has also been assessed as not suffering from a psychosomatic disorder.

He says he was taken in at first by some of the alternative medicine claims but doesn't believe in homepathy. He is using some herbal and nutritional treatments. And his parents are very supportive and always have been.

He is distressed that such a false picture was conveyed by very selective editing of the extensive interviews he and his family gave. He is in touch with the other participants and they feel the same about their input being selectively shown to make them look crazy to fit the director's narrative.

After an hour of answering questions sent to him on Twitter and facebook, he became too unwell to continue, but said he will try to do another session to answer more questions.

I was very impressed by him - he is clearly an intelligent and thoughtful young man who has been badly treated and is determined to try to make something good out of it.
 
Esther12 said:
Even with just the term 'mcs' _ I don't know how useful that is. I seem to respond badly to some soaps and washing powders, and lots of scents give me a head-ache now, but in the popular imagination the 'MCS' term seems really associated with patients following advice from dodgy sources or claiming to be certain that they cannot be near chemicals that they do not seem to respond to under blinded conditions.
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I read some of the studies trying to work out what was going on.

Honestly I can’t figure out why the idea of MCS has such a bad rap because it’s well known that people with other diseases like asthma or migraine or seizure disorders often respond poorly to environmental substances, and migraine, for example, is not well funded or well studied.

Anyway back to the studies, it didn’t look to me in the papers I looked at, like they were studying people who were diagnosed with MCS (is there a criteria?) or that this was necessarily something that affected their lives.

It seemed like they had possibly a convenience sample which they had screened with irrelevant questions (“are you concerned about synthetic chemicals?” Something like that, when anyone who knows anything about it understands that this isn’t a worry about “synthetic chemicals” because one could easily react to potpourri, basil oil, eucalyptus, wool, latex, or any number of natural substances).

So of course if they just grabbed random people that were “worried about how many chemicals are being used in the modern world”, they obviously weren’t going to get necessarily people with MCS.

With that kind of selection criteria, it’s not surprising they failed to show any results demonstrating sensitivities.

Maybe it’s just a game to some people who publish papers.
 
WillowJ said:
other diseases like asthma or migraine
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To this day doctors often advise migraine and gout patients to stay away from red wine and cheese, in the one case for amines and the other purines. These are chemical sensitivities. The notion is not foreign to medicine. Indeed, one could argue diabetes is carbohydrate sensitivity. Salicylate sensitivity was suspected for many decades, and the cause published in 1984, but I bet most doctors are not familiar with the details.

Salicylate sensitivity is particularly interesting because salicylates shut down the enzymes delta-5 and delta-6 desaturase. These two are needed on the synthesis path to all eicosanoid hormones. Some of these hormones have a half life of only seconds. So as soon as the salicylates are absorbed, such as via skin or mucous membranes, they can immediately start shutting down autocrine and paracrine hormones. It takes seconds.

Yet the notion that problems might arise that shut down broad tolerance to many chemicals seems absurd to some doctors. I would rather put it in the not understood basket, rather than the psych or too hard baskets.
 
Does anyone know how people were recruited for this? It turned out to be a scam and people were used.

I'm wondering if we need to adopt an approach like "financial scams" in our groups so that if people are approached they will be aware that this can happen.

Guessing that people were targeted, approached and maybe groomed to take part. The makers must have found them somewhere.

The message maybe to sick and disabled people could be like the financial scams advice "if it sounds too good to be true it probably is".
 
I think Jake said it was open recruitment - anyone was invited to put themselves forward to participate in what was explained as a chance for people with chronic little understood illnesses to share their stories. The producer who worked with him throughout filming was kind, supportive and asked sensible questions. It was presumably the director who decided how to edit it who did the damage by deciding to cut it to only show the bits that supported their chosen narrative.
 
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