Netflix "Afflicted" - ME included

Having ME has exposed me to the reality of our institutions.

I feel we have been betrayed by these institutions:

Research
Government
Medical
Media
and sometimes Family.

I think its worth repeating: the ME community must create media in order to control the message.

 

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.

 

https://twitter.com/user/status/1029716067730567168


https://twitter.com/user/status/1029856210160246784

 

https://twitter.com/user/status/1029853013828149248

 

We cannot ever control the message, though we can create messages in opposition to the inappropriate, wrong, or dangerous messages.

 

Supporting Jake might be an alternative to attacking Afflicted. Its a far more positive angle. What do others think?

 

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 looks like Jake is going to speak out in support of the participants, which is certainly an interesting twist.

 

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:

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.

 

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.

 

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 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.

 

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".