Netflix "Afflicted" - ME included

In the video he said he was still going to the clinic that was using dodgy Lyme tests, and looked to be involved in other quackery (did someone here post the link to their website? It may have been elsewhere). If it's an organisation like that recommending 'herbal and nutritional treatments' then there's good reason to suspect quackery imo.

edit: I don't know about this persons symptoms, and what might potentially treatable by nutritional treatments, but there does seem to be a problem with people making money from selling supplements, etc as treatments for things when there's no good evidence of efficacy.

 

I see, the organization. Yes, I'd believe that.

 

The majority of the people with ME that I know, have been diagnosed with other chronic illnesses. Like Jamison, I have also received a Lyme diagnosis. I’m not sure how Jamison’s Lyme was diagnosed but mine was a positive CDC Western Blot. I’ve also been diagnosed with Fibromyalgia by a Rheumatologist. Jen Brea has mold sensitivity which exacerbates her ME symptoms. My closest friend with ME has Multiple Chemical Sensitivity. Although I don’t have mold issues or MCS, I don’t discount the suffering of others. The patient communities must acknowledge the symptom overlap so we can advocate and guide research in the right direction.

We are actually losing individuals in the community that have been diagnosed with ME, because they receive a subsequent Lyme diagnosis and believe they were mistakingly diagnosed with ME. But there is science to back the relation of these diseases (one example: Dr. Naviaux’s work). However we need to align ourselves with our allies not only to gain their support so they back us when things like this happen, but because its the right thing to do. Its not enough for us just to “be right” and to exist to help us and ours. We have to continue to fight when we see injustice. Chronic neurological illnesses deserve our support and we can’t let what happened to us happen to another patient population.

Remember Jen’s TED Talk:
“Even once the true cause of my disease is discovered, if we don't change our institutions and our culture, we will do this again to another disease. Living with this illness has taught me that science and medicine are profoundly human endeavors. Doctors, scientists and policy makers are not immune to the same biases that affect all of us. We need to think in more nuanced ways about women's health. Our immune systems are just as much a battleground for equality as the rest of our bodies. We need to listen to patients' stories, and we need to be willing to say, "I don't know." "I don't know" is a beautiful thing. "I don't know" is where discovery starts. And if we can do that, if we can approach the great vastness of all that we do not know, and then, rather than fear uncertainty, maybe we can greet it with a sense of wonder.”

 

Saying we don't know enough about other people's illness-states and therefore we judge them to be fakers or delusional and undeserving of our help is such an own-goal that my eyes just rolled out of my head and across the floor.

We are always saying we would get so much more done if we only had healthy allies. And we can't even expand our circle to others with chronic, debilitating, and underfunded illnesses -- even temporarily, on one project? -- because we're afraid of how that might look?

Lots of us also have diagnoses of multiple chemical sensitivity. I myself was diagnosed with 'chronic Lyme' at one point (though I rejected the label as, like Jake, I had no positive testing for it). These aren't even "otherable" people -- they are quite literally us. Our patient population.

We have always had a strong and vocal contingent of patients who present themselves as having the "real" disease as opposed to undeserving fakers -- a narrative lifted from BPSers almost word-for-word and directed at other patients. It allows people to admit that there are 'bad patients' while casting oneself in the light of the 'good patient' with a real disease, who's worthy of help and time. It's natural, but it's not really okay. Especially in a disease that many would say does not yet have a single credible biomarker: we don't know who's part of our tribe.

I'm coming off a lot stronger than everyone else on this thread, and I'm sorry for it. But I've been looking into Afflicted for about a week, now. Talking to people who participated and listening to their stories, and investigating how the film was made. And it's all so, so much worse than it looks on the surface, where it looks bad enough.

We can't abandon these people not in spite of our own situation, but because of our own situation.

I'm sorry, I can't guarantee I'll be able to answer. These types of things get me worked up, and that can make me sicker. Excuse me, please.

 

@smh11814 I'm not discounting the suffering of others, or arguing that we should just look out for only our group - I quite agree that we should be challenging injustices where we find them. I just think that we should do that in the same way that we should challenge the injustices around ME/CFS: by looking carefully and critically at the evidence, trying to get a good understanding of what is actually true, and then focussing on the strongest points of our arguments to try to make progress.

re your CDC Western Blot, the CDC says re testing that: "The first step uses a testing procedure called “EIA” (enzyme immunoassay) or rarely, an “IFA” (indirect immunofluorescence assay). If this first step is negative, no further testing of the specimen is recommended. If the first step is positive or indeterminate (sometimes called "equivocal"), the second step should be performed. The second step uses a test called an immunoblot test, commonly, a “Western blot” test. Results are considered positive only if the EIA/IFA and the immunoblot are both positive." So do you mean you followed the CDC procedure, and have a Lyme diagnosis that would be recognised as valid by all mainstream doctors?

I'm not suggesting that if that isn't the case then your suffering is any less valid, but there are some doctors using dodgy testing procedures for Lyme that don't seem to do patients any good. There certainly are CFS patients who get given a Lyme diagnosis, and then spend a lot of money on alternative treatments for which there's no good evidence of efficacy, and that can do harm. I understand why many patients with a diagnosis like CFS would want to trust a doctor claiming that they have a good explanation for their symptoms and an effective treatment to be used, but when the doctors making this claim do not have any real evidence to back up their claims then we should be challenging those doctors, not supporting them. That so many people are encouraged to hold unreasonable views about their health is itself an injustice that should be fought against. No good will come of 'supporting' dodgy medicine as a part of some attempt at solidarity.

Also, I'm not saying that all of the issues around Lyme are simple, or that I think that the CDC has done an outstanding job responding to Lyme or the problems some people face with post-treatment Lyme disease.

Wanting to be supportive of people with health problems is quite different to supporting unreasonable or unfounded claims about the cause of their health problems. I think we should all be trying to think critically about the claims one another make, and then trying to point out where they may be inaccuracies or unreasonable claims. I know that I'm grateful to the people who took the time to challenge some of the unreasonable views I had about my health in the past.

Generally, I'm not much of an alliance builder , and prefer picking claims apart to joining in a rallying cry. When we're having to engage with the medical/scientific establishment, I think that is for the best anyway.

 

@JaimeS, thank you for your post. It's just my feeling that I agree.

 

A Lyme group has set up a petition to have Afflicted removed from Netflix for making a mockery of chronic illness.

Will this request have any impact?

 

First thing to do on Netflix is downvote.

 

The Epstein-Philip Barr virus?

 

It is important to note that NONE of these test diagnoses active Lyme infection. A positive Western blot merely makes it likely that there has been a Lyme infection in the past. Most Lyme infections resolve with or without antibiotics quite rapidly - maybe almost all of them. Lots of infections appear to precipitate ME so someone with a clinical picture of ME and a positive Lyme test is much more likely to have ME than to have 'Lyme disease'.

 

I agree with @Esther12 that 'joining forces' with advocates for Lyme, MCS and mould sensitivity is a bad idea.

There is a stark difference between ME and these other concepts. It is an incontrovertible fact that at least 0.2% of the population have an illness sensibly described as ME. It is just a name for a pattern of illness that exists. Whether or not there is anyone who has similar symptoms due to the Lyme bacteria, or mould, or chemicals is unproven.

The first diagnostic category is a description of a group of people who exist. The other categories are descriptions of speculations about cause. As far as I am aware, whenever anyone has tried to test the validity of those speculations they have failed.

So this is not about ignoring a group of people. It is about ignoring a group of speculations.

Those speculations come largely from fringe or quack physicians. Advocating for them is essentially marketing for fringe medicine. That seems to me a very negative thing to do.

 

FWIW, a jumble of thoughts from me on this discussion:

This is interesting from Simmaron on Lyme and ME overlap.

http://simmaronresearch.com/2016/08...nic-fatigue-syndrome-mecfs-are-they-the-same/

The conclusion seems to be that ‘chronic Lyme’ is not truly same as ME, though I understand one also could still have ME triggered by the Lyme bacteria. My take is that ‘chronic Lyme’ needs much more research. And an increase in Lyme incidence is certainly something Scottish government is taking seriously.

https://www.meassociation.org.uk/2017/06/scottish-parliament-debate-on-lyme-disease-21-june-2017/

(As an aside, the late Dr Darrel Yen Ho was a Lyme expert and also a great friend to pwME, he practised at Raigmore Hospital in Inverness, Scottish Highlands.)

I agree with @Jonathan Edwards that ME is a well established/described illness, whereas these other illnesses are not, and speculation of course attracts quackery like a magnet. But look at the quackery that ME patients have been exposed to in the past - all of us with poorly understood illness are subject to quackery at one time or another. (Also, worth bearing in mind that there *is* the possibility that poorly understood physical illnesses with no 100% proof diagnostics test will also invariably attract people, who may well have mental health issues and not the actual physical illness. That has to be considered, it can happen.)

Still, AFFLICTED sounds like a horror show, it has irresponsibly framed ME alongside these other illnesses about which much less is known. It has made a mockery of all who took part, is my impression, and sounds also as if not all characters are sympathetic characters that we would necessarily root for. Car-crash television designed to to titillate. I can well understand why chronically ill people represented in the film are up in arms. I would be furious had I taken part in good faith as an ME patient.

I guess though in UK we are well used to abuse and mockery in mainstream media from the Wessely PR/SMC machinery, it is old hat for us. We are used to being outraged by ignorance and drivel being broadcast. (And arguing our case on Twitter never gets us anywhere, we just get blocked). But it is the grinding hard work of ME advocacy based on *facts* that got the current NICE guideline review to happen. Speculation does not help us. We are not advancing in ME advocacy by also embracing the struggle of chronic Lyme, MCS and mould sensitivity. We can of course acknowledge there is other scary not-being-believed-shit going but I think we have more than enough on our plate to get to the truth about ME.

I also wonder if ‘joint’ approaches to ME advocacy is something more likely to gain traction in USA, perhaps because there is a higher incidence of mould/Lyme illness there? My heart I must say also sinks at the *conflation* of ME with with mould/chemical sensitivity on social media. This is not, I don’t think, the same thing as having sensitivities on top of an ME diagnosis, which many of us do, and of course, is important to avoid those triggers. But avoidance of chemicals/mould does not CURE myalgic encephalomyelitis. I have seen people on Twitter, in USA, saying they had *severe* ME/CFS until they got their mould under control - this just does not resonate for pwME in UK.

Severe ME sufferers in UK cannot go and live in the desert. They are 1) simply not well enough to and 2) also there is no desert to go to. My own view is that these people do not have ME but have a different illness ie. extreme mould sensitivity and, yes, the science is still patchy but that does not mean I don’t believe them - but please, please can we stop labelling everything that is poorly understood as ME, what do we gain? If you recover by avoiding mould then that is great, you are not ill any more, and you don’t have to cope with the ongoing harmful ignorance about ME. And actually I think the conflation does a disservice to those of us who have been ill for decades, our lives chronically, and often severely disrupted. Getting a mould-free camper van is not the answer to ME, in my opinion. Really. It would be lovely if it were.

And I have to confess, in conclusion, the electromagnetic hypersensitivity does press all my sceptical buttons, but of course I could be proved wrong. But I certainly disagree with ME being framed alongside EHS in any documentary. It frankly seems ridiculous.

EDIT. If I had been diagnosed (or self-diagnosed) with ME/CFS but recovered my health fully after practising extreme mould avoidance I might question if I had been misdiganosed. We do know that misdiagnosis of ME abounds - and the multiplicity of criteria does not help.

 

"
Afflicted on Netflix is hurting everyone — not only the chronically ill
"After seeing the trailer, I hoped it might be a groundbreaking documentary that would educate potentially tens of millions of Netflix subscribers about a group of illnesses that desperately need media attention. Instead, it was a horrible representation of the chronically ill that portrayed these seven participants as hypochondriacs who are out of touch with reality.

I would summarize the obviously biased message the film sent its audience with one phrase, spoken in the film by Dr. Friedman: “You can be deluded that you’re sick”."

"
I am a person with multiple chemical sensitivities.

I also have a sensitivity to mould and very mild electromagnetic hypersensitivities. It is quite common to see overlap between these conditions. Many years ago, I was also diagnosed with ME/CFS, however, in my case, I was able to regain my life by avoiding chemicals and mould. For that reason, this post is going to focus mostly on chemical sensitivities because it has had the biggest impact on my life and it’s the one I know the most about."




eta: another link that gets 'converted'....
https: //medium.com/@solonaarmstrong/afflicted-on-netflix-is-hurting-everyone-not-only-the-chronically-ill-63e21334f919

have inserted spaces

 

I’m in no way defending quackery or the “treatments” depicted in Afflicted. But the editing was intentional, science was removed and replaced with stigma. Discussion of legitimate biological abnormalities were omitted in place of alternative medicine. Its not like the producers were uninformed, they had the interviews and science yet they chose to misrepresent the situation. The producers selected this narrative to create drama, skepticism and harm our respective chronic disease communities.

Just because the film depicts the subjects pursuing alternative medicine does not mean that we should distance ourselves from those conditions. It shows the desperation and abandonment that most individuals with chronic illness face and that aspect of the docuseries was actually the most relatable in my opinion. When a patient has X symptoms and receives no treatment from mainstream medicine, many will search out treatments out of sheer determination to find relief.

For many, including myself, this is not “speculation” - it was a DIAGNOSIS received by an MD. I could have easily chosen to abandon the ME community and become a Lyme advocate/patient. Maybe this is a problem in the US more so than elsewhere but, ME is a diagnosis rarely given or heard of by all physicians I've met. I have to spell it out for them when I go in for a new appt (literally). I practically self diagnosed for years because I did not have access to a specialist. Later I was able to meet with Dr. Enlander and Dr De Meirleir who confirmed that diagnosis - but this is where the problem lies. A person suffering from my symptoms in the US would be more likely to receive a Lyme or Fibromyalgia diagnosis. And until a biomarker is developed, we do not know what groups are actually a subset of ME. Like @JaimeS said, we don’t know who is apart of our tribe.

There has been quite a bit of discussion about the consequences of engaging in advocacy as a response to Afflicted but I encourage everyone to think more about the consequences of inaction. Although ME was portrayed as the least psychosomatic illness in the docuseries, its not like we walked away unscathed. Medical professionals will see Afflicted and develop their own opinions and considering the bias we already face, I’m not optimistic that the odds are in our favor.

 

But this is the problem I was trying to highlight. A lot of diagnoses from MDs are speculations. Having listened and talked in the ME community for five years I am not sure I know of any 'ME specialist' who I would regard as reliably following evidence.

ME, CFS or SEID are all names for a pattern of illness, that make no speculations about cause. There is no doubt that at least a million people fit this category. But it is not a 'disease' in the sense that 'Lyme disease' is a supposed disease caused by active borrelia infection or mould intolerance is a supposed disease due to specific actions of certain moulds.

So what I am saying is that the problem reflected in Afflicted is that doctors are giving people speculative diagnoses and those people are being made fools of because they believe those diagnoses when so far we have no real evidence that they refer to real illnesses. The difference for ME is that whatever you call it, it is a real illness.

 

I agree with much of what you are saying here and I think we are on the same page but what I find confusing is that you are opposed to “joining forces with advocates from Lyme” yet you seem to agree that people with ME-like symptoms are being (mis)diagnosed with Lyme. We can’t be so certain they don’t belong with us because diagnostic testing is a major problem for both conditions.

Again maybe this is mainly a problem in the US, but we are losing a huge portion of probable ME/CFS patients to (mis)diagnosed Lyme and while we wait for science, we should be having the conversation about aligning.

Alliances can emerge because of threat/commonalties/similarities and the HIV/AIDS community demonstrated that it can be done successfully. The rationale for uniting with our friends in chronic disease is strong (our symptoms are near identical/overlapping, disbelief is a major issue, accurate testing for diagnosis is urgently needed to distinguish our conditions). The benefits outweigh potential risks - we could increase our resources which may help create more creative solutions to our problem, we could spread out our workload among a larger group, and of course the overall goal: we would be able to increase science and awareness.

Advocating for the illnesses in Afflicted is in no way marketing for fringe medicine, its the opposite! These overlapping symptoms exist and we need more research - not cognitive behavioral therapy, antidepressants or quackery.

 

20% of serious disease diagnoses are initially wrong, so just even if an MD diagnoses you with Lyme, that diagnosis is not necessarily written in stone.

I agree that patients who develop ME/CFS symptoms and are diagnosed with chronic Lyme may not have Lyme at all, but might instead have regular ME/CFS. Unless there are circumstances that make the Lyme diagnosis more probable (such as a clearcut case of a tick bite with the bull's eye rash occurring not long before the ME/CFS symptoms appeared), then a patient presenting with ME/CFS symptoms may just have regular virally-triggered ME/CFS.

Certainly it makes no sense to me that patients with ME/CFS symptoms should only get tested for Borrelia, given that ME/CFS is also linked to certain enteroviruses and herpesviruses, and a few other pathogens. So at the very least, Lyme-diagnosed patients might want to check for enterovirus and herpesvirus, and if there is evidence of active infection with these viruses, that may change their outlook on the cause of their symptoms.

It seems not uncommon for Lyme-diagnosed patients just to test for Borrelia (often using dubious labs like ArminLabs and Igenex), and once they get a positive test result, they settle on a Lyme diagnosis without any further testing.

 

Unfortunately, this exact same process has been practised by the medical establishment in UK, stigma created, biological abnormalities ignored, the illness ME wholly misrepresented in favour of unsubstantiated beliefs of prominent psychiatrists. I honestly *can* see how horribly flawed and damaging this AFFLICTED programme has been but at end of day it is junk TV - it will be forgotten - and the participants did agree to take part, perhaps a little naive about how such documentaries can be edited. In UK, doctors with similarly loose ethics to producers of this programme, have been influencing the way that ME is treated for decades. Arguably, much more harmful as patients have had no say in the matter and have been collectively maligned as a community when we spoke up. And these psychiatrists' harmful, flawed therapies of GET/CBT have of course been adopted worldwide.

Edit: What this programme has really done is expose viewers' prejudices, prejudices already there, and in the case of ME those prejudices have been for years cemented by medical profession.

 

I'd be cautious about accepting claims made by Dr De Meirleir.

I'm doubtful that useful ME/CFS advocacy will be about 'tribes', or deciding who is 'deserving', or anything like that. I think that we need to keep picking away at people making unjustified claims. That's where we can, and have, made useful progress. Looking carefully at the evidence, pointing out when people are misrepresenting the evidence, pointing out that this can harm people. It's incredibly difficult for us to inform ourselves enough about another person to be able to make a useful judgement about their personal story, but we can look at evidence from research and explain how that has been misrepresented, or how some of the research itself is poorly designed, and that can help us push for raised standards.

I've not been talking about rejecting (or accepting) individuals, but arguments and claims about the causes of ill-health. We do need to be really selective there.

I think that Afflicted is going to be bad for us, and for lots of other people with health problems. I don't see any way of changing that. It does seem that there are legitimate concerns about the way in which the series was put together, but also, I think that the prejudices already surrounding ME will mean that ME patients are not a great group to raise concerns about this and that any attempt by ME patients to raise concerns that is not extremely careful and well crafted will bring a real risk of making things even worse.

I think that we're best off focusing advocacy efforts in the areas where our arguments are strongest, and I don't see how Afflicted could be a great issue for us. That's not to say that there aren't problems anyone should raise concerns about though.

When the 'MUS' movement is keen to try to lump together a wide range of different patients, some of them defined by unfounded claims about the nature of their ill-health, I don't think it's a good idea to join ME/CFS advocacy up with 'electro-sensitivity' and other things like that. If other patients are making claims unsupported, or even contradicted, by the evidence then we should be willing to challenge them on that, just as we would medical professionals who make unreasonable claims (although I also think that there are good reasons to prioritise criticising those with misguided views who have the most power and authority). I think that we could try to link with the 'chronic lyme' community by explaining to them that many of the tests used to diagnose 'chronic lyme' are dodgy and should not be trusted. That could be a valuable thing to do. But I really don't think that we should have any sort of alliance in which ME advocacy is linked to the endorsement of results from dodgy tests, or any other unfounded claims about the causes of peoples' ill-health.

Also, some of the above certainly applies to some ME patients too. I'm sure we've come across patients who confidently assert their own view on the cause of ME, based on flimsy evidence from one paper, or something like that. They can harm the way others are viewed, and it would be good for all of us to be encouraging greater caution and rigour in the way that ME is discussed. We still don't have a good understanding of what's going on, and probably won't for quite a while yet.

 

Well, although not a direct test, an IgM positive WB within 30 days or so of a tick bite would be highly suggestive of an active early disseminated Lyme infection
.
Later, a positive WB IgG could just represent an old infection. Conversely, it could be a clear signal you're in the grips of an active infection since an untreated case of Lyme, or an undertreated case, both convert to IgGs, and so if you were sleuthing for active Lyme, you'd be pleased to find a slew of IgGs.

Sure, about 80% recover. That does indeed equate to most - maybe even almost all.
The 20% that do not is no small thing, though, not when your looking at, say 350,000 cases each and every year just in the US alone. 70,000 debilitated patients jettisoned onto the streets every 12 months to fend for themselves is not a pretty picture. Democratization of medicine is sometimes a bad thing.