Netflix "Afflicted" - ME included

That could have been a ploy to draw participants out and keep them onboard until the end of the project.

 

To me, the idea that people can respond badly to certain substances in ways that we do not understand seems entirely unsurprising. But the 'MCS' label does seem to be associated with a lot of quackery, and also some people making claims about their sensitivities that don't really make sense and that, if validated under blinded conditions, would seem to be fairly amazing. I can also see how people with genuine sensitivities to certain substances could end up getting sucked into quackery and come to make some unreasonable claims, or adopt a 'better safe than sorry' approach to think that they're told they should be wary of, but that approach can lead to other people treating them with greater scepticism.

It's clearly not reasonable to stigmatise all people with sensitivities to difference substances on the basis of some people making weird and exaggerated claims about MCS on the internet, but it's also unsurprising that prejudices will be spread by that sort of thing. It's another reason why it's valuable to try to unpick unreasonable or exaggerated claims made by some ME/CFS patients.

Do you think it could be worth warning him that it seems he is still a bit entangled in quackery? If he is in a position where he might get further scrutiny he might appreciate being warned. In his video he came across as someone who was interested in getting to the truth. I feel really bad for him if he was filmed while repeating claims that had been made to him by quacks. If the producers had wanted to engage in a sceptical examination of his claims they should have done so to his face, not behind his back in the edit room. It's only fair to give him a chance to check his facts and re-consider what he was told by others. It seems that the participants were misled on what the documentary was intended to be, and this will have left them poorly prepared for it. When people first get ill and are desperate to recover it can be so easy to just accept what you're told by supposed experts in a way that might seem foolish to those who haven't experienced such a situation themselves.

re Afflicted generally - I've not seen it, so am not commenting on any of the specific people in there, but if the producers did go out to find people making unbelievable claims about their health in seemingly manipulative ways, it's possible that they found some. One reason why I don't watch documentaries like this is that so much depends on the edit, and if I google after watching one I normally end up feeling the producers created some manipulative story. While this means people can be portrayed unfairly, it could also be that some of the people involved are behaving unreasonably.

There's a widespread problem with the victims of sexual abuse not having their concerns taken seriously, being dismissed through prejudice and portrayed in an unfairly negative light. But that doesn't mean that there are no examples of accusations of sexual abuse being fabricated. If a documentary maker told potential participants that they wanted to film them discussing their assaults to help reduce problems with stigma and disbelief, but then chose to seek out and include extreme examples of people making implausible claims, mix them in with others, and include a voice-over from a psychiatrist talking about how some people want to be thought of as victims, then that would be problematic. However I think it would be a mistake to respond to this by arguing that all of the claims made about sexual assaults in the programme were true.

 

I haven’t watched the series. But in general a lot of people will likely to be skeptical of conditions that are not explained by science. And people with more extreme impairments could easily have to deal with the greatest level of disbelief.

I think communities with unexplained illnesses need to try to fundraise for scientific research for their conditions. Solely spending money on speculative treatments and then sometimes looking for more money from others to try speculative treatments is a risky strategy that doesn’t maximize the probability attitudes will be good. (At least two of the people in this documentary have done the latter, one raising over $70,000). Raising money for research also can help inform decisions on what treatments may be worth trying, increases the chances health systems will pay for treatments and also increases the chances new treatments will be developed.

 

I was really moved to see Jamieson struggling to communicate and think he’s to be applauded for showing himself clearly weakened and impacted. The contrast with his former fitness self I think clearly showed strongly the impact of ME. On its own I don’t think his section was too poorly done although I wasn’t so impressed with his dr. The context looked poor though, I didn’t watch the rest because I’d been forewarned. I don’t think putting severe ME in that context really could work and Netflix are probably better off at doing wacky zombie series if they can’t show fundamental respect to sick people with medically unexplained and probably shunned symptoms.

 

I absolutely agree. However, I have 20 years experience and a fair bit of wasted cash to inform my view.

The snag, as I see it is that the newly ill have huge adjustments to make. They, not unreasonably, believe that doctors will always have their best interest at heart and that they are the best source of knowledge for what ails them.

The reality is that the people who know most about living with a long term condition, are people who are living with it. So support groups are a great place to start. A support system the BPSers have been keen to denigrate.

The newly ill keenly feel a loss if control and so understandably want to take it back. There may also be a great deal of pressure by employers, friends and family to do something.

These are all things that led me to wasting time, energy and money to get well.

Money that would have been better going to research projects.

 

Yes, there is pressure.

 

I would also add that one of the things that I’ve had learn to endure as a patient is how to deal with the volume of advice I receive from very well-meaning, friends, relatives and acquaintances who try convince me to try all manner of quack treatments. It is not only the sick and desperate who are susceptible – it seems many healthy, otherwise-sane, and often highly educated people believe in all sorts of hocus pocus. In fact, I suspect that many chronic patients may be among the more sceptical due to our long and painful experiences. I was far more convinced of the power of woo-woo before I was unwell and in the very early stages, but 26 years of illness has given me a hard lesson in reality.

Yes, It is these practioners who should be the subject of a series like Afflicted, not their victims.

Perhaps the production company should be challenged to give a different editorial team access to all the raw footage to make an alternative version of the series. I don’t know if it would be feasible but in an era of fake news, it could be an interesting illustration of the power of the media and editors to present and distort reality in very different ways.

I agree but we all know how hard it can be to resist trying these things. It’s a bit like Pascal’s Wager, which can be persuasive despite its flaws. (It also happens to be the title of a book I’m hoping to write).

Disclaimer: I’ve not watched Afflicted, and don’t intend to.

 

Just to highlight and I said "solely". I'd be happy if people gave 1% of what they spent on treatments. This would lead to very considerable sums given the numbers affected. From what I have seen, most people don't give to research at all. And similarly few try to fund-raise in some way or encourage family members to fund-raise (though I can't be sure of the latter as it is hard to know if they have asked).

I see it as being like having a diversified portfolio where you don't put all your assets in one pot/basket as it might not work out.

 

I agree 1,000 percent. It's none of our business, especially considering he's doing remarkably better than he was in his fundraising video.

 

Yes, I’ve made this point before, and it’s worth repeating: if there are 250,000 ME/CFS patients in the UK and 15-30 million worldwide, if each patient raised on average $10 per annum for research that would raise $2.5 million in the UK and $150-300 million worldwide every year.

 

Article in a Spanish paper:

https://translate.google.com/transl...ras-pseudociencias-6988919&edit-text=&act=url

 

Not been following this thread at all due to pressures at home, sorry, other than understanding that the vast majority of patients have issues with the series.

However, I'd like to add the following experience. Yesterday, at the class I teach, one of my students (all of them are aware that I have ME) mentioned that he had watched Afflicted and talked especially about Jamison. We, as well as another student, then had a discussion about how most patients hadn't received it very well, the broad reasons why and then from there into the finer details of all things ME.

I don't really have any other point than, in this one particular example, it actually did well at prompting further conversation about ME. However I can well imagine that people who don't know anybody with ME before watching it may well form a different view based on what they 'learnt' from Afflicted.

 

I think it may be partly related to the lack of official diagnosis, i.e. people don't even know that they have it or an uncertainty even among the diagnosed patients that this is their disease and that this is what's gonna be researched by particular foundation/charity that hey choose to donate to. Need an accurate diagnostic test, immediately. It could be a game changer in terms of funding for various reasons.

 

This calculation is a bit flawed in my opinion and raises expectations (and thus potentially frustration), although the point is understood.

Most people with ME don't get diagnosed. In Germany for instance, the diagnosis simply isn't given, and my impression was that's not the exception. How's it in Russia, in China, Africa...? Besides, many people (I think the majority?) on this earth can't give 10$ per annum.

Each single person has to survive, and if you can't work that's truly endangered. So it's understandable that sick people pay for a multitude of treatments in order to survive in the future. (Research could contribute to survival indirectly, but on the longer run. But people need to eat and drink today, not in 20 years.) I did so, too, in the hope to maintain or regain the ability to work. The pressure from friends, family, authorities and financial stress (danger of poverty e.g.) mustn't be underestimated. If, for instance, you don't engange enough in getting healthy again (whatever that is) the health insurance can cut payments for sick leave. Family can say "What, s/he's not trying to get better, so I won't help anymore" (a very neoliberal-capitalistic way of thinking by the way; help needs to be earned, or to say it with a German politician's words, "those who don't work shall not eat").

It's really difficult.

Edit: Oops, @Pechius, sorry for repeating.

 

Same in Lithuania. You either end up with no diagnosis or if you continue pushing, you'll find yourself with a psychiatric label, like I have. I assume the same applies to all eastern and probably most central Europe.

 

I came upon a thread on the medicine subreddit (I won't link because they hate that) but a comment really jumped out at me. I think it really describes exactly what is wrong with medicine to cause situations like ours, because they seem to take a small fraction of their actual difficult patients and simply apply them as a whole to anyone with a stigmatized disease, then apply a heavy dose of mythology because it borders on delusional how far it is from reality.

No thanks, I see enough of these patients in real life.

These patients are extremely difficult to evaluate. They doctor-shop every specialty (except psychiatry) and see multiple doctors within each specialty in a single university medical center (who cannot find a diagnosis), with a history of having been seen by many other providers at many other university medical centers in the past, especially "big-name" places (who did not find a diagnosis). I have had patients bring in large boxes of records, all negative even though the patients will claim an actual diagnosis has been made.

Most excessively self-diagnose from the internet. Many have Munchausen Syndrome tendencies (and of course it is exceedingly problematic if By Proxy towards their child). Most are highly enabled by their families. Most get a great deal of secondary gain. All are seeking a definitive diagnosis to receive Social Security Disability income. Some will instantly leave when we attempt to as gently as possible, refer them to the psychiatry dept. However many who stay (while refusing psychiatric evaluation) are exceedingly demanding, then turn abusive towards staff when their demands are not met - so many that my University's legal representation for our group practice will end up requiring us to "fire" such patients because they are essentially non-compliant to your recommendations. In fact, a subset will threaten to sue you.

When you do this long enough, you too will burn out on these patients, and have no desire to also spend your free time watching them on TV...
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Basically every single claim made in that comment is the exact opposite of our reality and that of the tens of millions of others living with poorly understood chronic immune diseases. It describes the complete opposite of my personal experience, to a disturbingly accurate degree. It's a perfect description of exactly what does not happen. Secondary gains? WHAT FUCKING SECONDARY GAINS?! WHERE?

We do balk at a psychiatric referral, although that is perfectly natural since it doesn't have any more answers than alternative medicine does. Decades ago, psychiatry had little to offer to asthma or tuberculosis patients either, and still does, they're just not wrongly sent there anymore.

They look at alternative medicine as an indictment on desperate idiot patients, instead of a measure of their own failure. No one would "self-diagnose on the Internet" or use alternative medicine if modern medicine did better. They speak of numerous past appointments, seemingly not aware that most of those were about 5 min. and ended with a shrug of indifference. Which is strange because that's how they likely did themselves.

I don't know where that attitude comes from. It seems to have always been there and the medical profession is just incapable of self-reflection about other people's past mistakes. It's not even their personal mistakes, I don't understand the stubbornness in refusing to address such glaring failures. The costs are staggering and the outcome disastrous for everyone.

 

This also includes other M.E patients who feel the need to pressure you and have the attitude that they are trying harder than you to get better.

 

Since Afflicted came out, I’ve been debating on whether or not it should be ignored or if we should kick advocacy into full gear. But I believe Afflicted has presented us with an unfortunate but unique opportunity. This may be the moment we have been waiting for to get ME the recognition it finally deserves.

Inaction may result in people with ME being disowned from their families, or losing friends/relationships and worst case scenario, someone may take their life. We’ve waited for an opportunity to get ME into the headlines and although this isn’t exactly how we had all dreamed on achieving that goal, we can develop a campaign to counter this injustice/misrepresentation that press outlets find interesting.

One opportunity that stands out to me the most is our ability to unite with our allies, specifically the Lyme community. I’ve been racking my brain for years trying to come up with some way our communities could come together and I think this is it! Its already happening, people with ME, Lyme, MCS and mold sensitivity are connecting because they are equally as outraged with our portrayal in the docuseries. I think we need to be creative, like we were with #MillionsMissing, and change the direction that Afflicted tried to take our community. If someone has an idea for a strategy, perhaps contact MEAction?

Although this might not be the best approach for everyone, we must remember that there are different ways to handle this situation and we have to engage in the type of advocacy that meets our needs.

 

Some doctors have a secondary gain by ignoring us because otherwise things would be too difficult for them, the poor dears.