Netflix "Afflicted" - ME included

https://twitter.com/user/status/1028341252989714433

https://twitter.com/user/status/1028342310386331649

 

A real gem at the beginning of episode 3

Dr: I've had a few patients who became so identified with their illness they really weren't willing to be cured.

 

"These bastards don't want to get better" comes to mind.

Probably a doctor that thinks he knows how to cure patients and doesn't realize it's not working.

 

I saw the first episode and I'm beyond unimpressed -- I'm infuriated. I've written about it, but I don't want to make people who participated feel even worse, so I'm holding off.

 

Haven't watched it (no Netflix and trial month already used). Read that Jamison's sister was filmed by the Netflix team when she went to the Stanford Symposium on ME last year – was it included or any other ME specialist (Jarred Younger)?

 

https://www.dailydot.com/upstream/afflicted-series-netflix/

Oh dear! With articles like the above, viewers will have their opinions influenced before they even watch the docu-series. A few excerpts:

• In figuring out what’s psychosomatic and what isn’t, . . .
  
• Jamison, suffering from myalgic encephalomyelitis, remains bed-ridden and in constant pain in every part of his body. Yet, it is his parents that bring up hypochondria.
  
• In fact, the relationships and each of the patients’ loved ones’ willingness to endure alongside them is notable, even with inconsistencies and new determinations that seem preposterous.
  
• The show mostly neglects external factors, such as prior stresses and traumas.
• . . . there’s the consistent surprise at new (and usually questionable and opportunistic) diagnoses.

 

From looking at responses to this, it seems to be another example of how quackery doesn't just take time, money and effort away from patients, but it also encourages scorn from others. It's not fair, but it's another reason that it's best to try to encourage caution and rigour in the way we assess various claims about treatments and causes of ill-health.

If the producers failed to take the time to understand and explain why it is that people can fall victims to quackery, that seems unfair on the patients involved. There are a lot of social pressures for people to be heroically pursuing some understanding and treatment for their health problems. Accepting that we don't know is often viewed as 'giving up', and another reason to view sick people with scorn.

 

I can’t judge AFFLICTED as have not seen myself. I don’t have Netflix. But the responses I am seeing are disturbing. Awful if Jamieson feels misrepresented by the way the documentary evolved. Poor guy. He must feel betrayed. I truly hate to see ME mixed up in this kind of film series, it feels like it doesn’t belong.

 

Jamison posted the timecodes he's in, if people would like to just watch these parts:

https://twitter.com/user/status/1028474163244101632

 

I totally agree. I’ve seen all episodes, and even Jameson’s md is a ‘quacker’ (an md that works with integrative and functional medicine. That was the case with most of the experts), and that doesn’t look good at all. And I’ve seen a lot of people get hypocondric when they go to alternative terapeut’s that trigger them. And I’m not against alternative therapies, it has helped me, but it doesn’t cure and it can also do harm. Lisa Nagy was the worst of the ‘experts’ portrayed I think, she scared a woman with mcs to do expensive treatment or else she would be so much sicker. And this woman was already financially and mental drained.

And I think it’s wrong to say that only Jamisons story don’t fit in the series, because all the other people are really sick, mcs for example are common among patients with ME. All of them deserves to be heard but not in this way. This is like a freak show, and some parts even looks like it’s not real, it’s like some parts are fake documentary, it looks arranged in some ways, but that is just my feeling.

 

Wow by episode 6 they really sink to a new low, this is narrated by doctors and partners over a sequence ending on a still of the featured participants including Jamison.

I wonder, "Is he imagining this to the point that it becomes real?"
Is this in her head? Is it psychosomatic?
There is emotional and psychological components.
Some of it's in her mind, I guess.

I do think there is a mind-body connection.
Illness is a dysfunction in the mind.
I view the distinction between the brain...
the body and the mind as artificial boundaries.
They're seamlessly connected to each other.
Patients who have emotional issues,
that can translate physically.
And we find that to be true especially for chronic illnesses.
Your brain is capable of producing physical,
real physical alterations by itself.
The notion of something being all in your head is interesting.
It's no less real than in the body.

 

AMMES (American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society) is advertising the series on its website; maybe someone should tell them (you can post a reply)

https://ammes.org/2018/08/10/netflix-launches-afflicted-a-docuseries-about-chronic-illnesses/

 

I would personally ask someone if they were okay with anything they wrote on here being ‘reframed’ and tweeted. Although this is a public forum, I think is good protocol to ask someone if they are okay with their comments being platformed elsewhere.

 

The people who took part in this seem to have been "used" to demonstrate someones flaky ideas

 

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. It can be viewed similarly to that 'electro-sensitivity' one.

Then there's all the dodgy tests for 'Lyme' that some alternative doctors try to sell... for people looking for explanations for their ill-health there's so much quackery around that can take advantage of them. IMO one of the serious problems with mainstream quackery like the PACE trial is that it can end up driving people to 'alternative' quackery.

 

Just re-watching that bit I'm not certain the doctor is questioning the ME diagnosis, I think when he refers to ME he means the literal translation of inflammation in the brain rather than the illness defined as ME/CFS.

This is the transcript if anyone else can help make sense of it.

So, the issues that we want to make sure we deal with going forward,
okay, myalgic encephalomyelitis.
The problem with that name is that it's just not accurate.
I don't know what your illness is.
What does Jamison have? I don't know what Jamison has.
There are a subset of patients who did have inflammation in the brain.
But the vast majority of people with chronic fatigue don't.
And they're just as sick.
You have an illness with a lousy name, what can I say?

 

Well, I wish it wouldn’t be so misused, because for me it’s a painful reality to be so sensitive to perfumes and chemicals, and the Primer for ME explains it like this:
“Multiple chemical sensitivity (MCS). A number of patients with ME/CFS also have MCS. Rather than an allergic response, their sensitivity is to low levels of specific odors or chemicals, which cause an ex- acerbation of symptoms. For example, perfumes, cigarette smoke, cleaning products, paint, glue and many other odors may cause problems. These pa- tients may need advice on how to avoid the envi- ronmental chemicals which trigger symptoms.84 Patients with multiple food sensitivities who avoid food groups may need dietary counselling to rotate their foods to avoid malnutrition.”

I totally agree with you about tests, it really scares people up, and I think it can trigger phobia, like germophobia. But it’s the same with common allergies, a person can get very scared for common allergens (that are measurable) if they have the slightest predisposition to be phobic.