Netflix "Afflicted" - ME included

Esther12 said:
I'm consistent about not recommending patients use testing that lacks any good evidence of value. I also try to be clear about the limited value of an ME/CFS diagnosis. There is no reliable objective test that we can be confident distinguishes those who have ME/CFS from those who do not, and I expect that within the ME/CFS diagnosis there will be groups of people suffering from different causes of ill-health. Also, while a diagnosis of ME/CFS can be of value when accurately applied, there certainly are prejudices associated with it which mean that some patients might be better of without any diagnosis for the time being, even though that can bring its own difficulties
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Right, good, but I was asking about Lyme testing. If you are going to point out limitations to Lyme testing, do you offer alternatives to those you try to dissuade from a given test, and do you qualify that gold standard with appropriate limitations?

I do not wish to belabor this. I just find it hard to take a high ground when it comes to Lyme diagnostics OR treatment, as I find it all dangerously unreliable. I mean, I will make recommendations, but for me to say cytokine profiling, for instance, is quackery, I wouldn't presume to know this. I have seen shoddy validation efforts, and I am left trusting very very few, including so-called conventional TBD metrics which come with their own purported issues.
 
Jonathan Edwards said:
Thee are bona fide treatments that you will not get on the NHS until it is too late, like my cancer surgery, but at least they will tell you the treatment exists and is bona fide.
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I’m very sorry to hear about your cancer, Jo. I didn’t know.

Jonathan Edwards said:
An illness with a range of casual factors and variants in expression, yes, but an illness in much the same way as diabetes is an illness or hypertension is an illness, I think.
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Given the heterogeneity and the number of people who are diagnosed with ME and then rediagnosed with other legitimate diagnoses I have always thought it improbable that it is only one illness – if so many different known illnesses can be obscured by the ME/CFS diagnosis it seems unlikely to me that it does not include more than one unknown illness. But I hope you are right.
 
Robert 1973 said:
I’m very sorry to hear about your cancer, Jo. I didn’t know.
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No don't be sorry. The NHS surgeon who could not book me the operation referred me to an NHS radiotherapist for alternative advice who then got a private surgeon to put me on his list the following Thursday. That was seven years ago and based on some rough and ready calculations I would need to be two hundred years old before I was likely to have a recurrence. My sore knees and bad hearing are more of a problem these days. (And I don't need sympathy for either. I have been lucky by and large. My hearing aids from two doors up the road from the private surgeon are ace.)
 
duncan said:
Right, good, but I was asking about Lyme testing. If you are going to point out limitations to Lyme testing, do you offer alternatives to those you try to dissuade from a given test, and do you qualify that gold standard with appropriate limitations?

I do not wish to belabor this. I just find it hard to take a high ground when it comes to Lyme diagnostics OR treatment, as I find it all dangerously unreliable. I mean, I will make recommendations, but for me to say cytokine profiling, for instance, is quackery, I wouldn't presume to know this. I have seen shoddy validation efforts, and I am left trusting very very few, including so-called conventional TBD metrics which come with their own purported issues.
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When I last looked at the research around Lyme testing there was good evidence that the mainstream CDC testing was of some value, although it was still less then perfect, especially early during an infection. It was also clear that some alternative/chronic Lyme practitioners were making very strong and important claims that were completely unsupported by any worthwhile evidence.
 
Not sure it's been posted yet, sorry if it has.

Jamison, and other participants of the series, have written a group blog post about it
We are some of the subjects of the recent Netflix docuseries, Afflicted.

We were all told that we would be participating in a project that would show our lives and our struggles with illness through a “compassionate lens.” We participated because our diagnoses are misunderstood and stigmatized. We thought that revealing some of the most intimate moments of our lives would lead to greater public understanding. We hoped that with it might come investment in research to find biomarkers and better treatments. We never fathomed that we were participating in a project that would instead expose us and our communities to further ridicule and disbelief.
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Code: 
https://medium.com/@afflicted/the-truth-behind-netflixs-afflicted-92e92d32cd7c

They link to a number of individual blog posts that a number of them have written at the end of the article.

ETA: More detail.
 
Esther12 said:
When I last looked at the research around Lyme testing there was good evidence that the mainstream CDC testing was of some value, although it was still less then perfect, especially early during an infection.
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Ok, an encapsulation of some purported issues with CDC 2T:

One), Yes, no good early on. You kinda need to wait 30 days or so;

Two) The First tier ELISA misses too many cases; some maintain it is as good as a coin toss;

Three) Arguably the two most important proteins (ie bands on the Western Blot - the 2nd Tier of the 2T) are now absent due to vaccine development;

Four) If you do manage to snare a positive on the 2T - or the C6 for that matter - it can be revoked as a false positive for any one of several reasons, including geography;

Five) The number of famous false negatives is growing at an alarming rate. We know that the 2T misses cases. Period;

Six) What is being done to build a better mouse trap? Meaning: What is the NIH doing to generate a new diagnostic for late stage cases? The answer is little to nothing, and it might be prudent to ask why;

Seven) How many people/organizations control the $500,000,000+ diagnostic market? The answer is likely a lot fewer than you might imagine, but they levy a good deal of influence. Perhaps this might contribute to the snail's pace direct diagnostics have made in this arena.

There's more. Strain/species issues and the like. Also there is the challenge that initial validation efforts were suspect (e.g. only using a single iteration of Bb that gave rise to Lyme arthritis etc, but not neuroLyme), and subsequent ones simply built off the same mistaken platform.

You get the idea, hopefully.
 
One of the issues with Lyme disease is that ticks carry many more pathogens than Lyme. New ones are discovered from time to time. So while the Lyme might be gone (or not), we don't always even have tests for the other pathogens, or have them easily available and used. This is without considering recent findings on post infection chemistry with a rewrite of the epigenetic code.
 
@alex3619, 18 or more? Or something like that - I may have that number wrong as it just came from my suspect memory. I do know that where I live over 50% of ticks carry more than one pathogen.

ETA: The CDC lists 16 tick-borne diseases on its website, but they are missing some I think. One that comes to mind is bartonella, and that is likely not listed as the CDC maintains this has not been proven to be a TBD.
 
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Robert 1973 said:
When somoneone in the UK says they were diagnosed with ME for a long time before they were eventually rediagnosed with Lyme disease, you can usually make a fairly accurate guess about where they were diagnosed.
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This reminds of a case I know where someone doesn’t remember getting a tick bite but they speculate they got a bite when they did a road bicycle race through an area which has more ticks than where she is from. I’m sceptical by nature and this sort of case makes me sceptical in that case at least. They subsequently went on to crowdfund for treatment in another country (can’t remember cost but substantial).
 
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Trish said:
Jamison's story of his experience of being on 'Afflicted' and his thoughts about it is told on his blog:
https://jamisonwrites.com/2018/08/20/netflix-and-hill-the-true-story-behind-afflicted/
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I'm not sure it's wise to be using Dr Eric Gordon as an expert. He seems to be promoting some dodgy stuff:

https://www.gordonmedical.com/unrav...disease-with-frequency-specific-microcurrent/

It does, again, sound like there are real problems with the way this show was produced though, and that's not fair on the participants regardless of whether or not they're making other mistakes in who they trust.
 
From Jamison's blog:

It was around this time that I learned that I would not be paid for my time and effort on Afflicted. For ethical and journalistic reasons, documentary subjects are never paid. My issue is that it’s now obvious that DocShop and Netflix intended to make not a documentary, but rather a reality TV show. People on reality TV shows usually get paid for the entertainment they provide, but none of us did.


I was about to undertake a process in which me and my family would devote dozens of hours without pay and under false pretenses. In fact, we’d end up losing money because of the footprint the production company left on our property and lives.

Perhaps there is an opportunity for a class action lawsuit against DocShop / Netflix?
 
Mij said:
Dr. Eric Gordon also treats Whitney. JD, "I trust him with Whitney's life. This man is trustworthy".
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That doesn't sound good.

I thought it might be a bit OT to mention that Gordon was the final author of this Naviaux paper, which said 'Edited by Ronald W. Davis':

http://www.pnas.org/content/early/2016/08/24/1607571113.full

I don't know much about Naviaux's work, but his association with Gordon doesn't inspire a lot of faith.
 
Luther Blissett said:
What's wrong with using a TENS machine to treat chronic pain?
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Did you watch any of the videos?

When I looked for any real evidence of 'Frequency Specific Microcurrent' as an effective treatment of anything, never mind Chronic Lyme, all I really found was blogs being criticial of it as a form of quackery.

Gordon also seemed to be promoting other things, like Ozone therapy, which look dodgy and lacking in evidence of efficacy: https://www.gordonmedical.com/unrav...to-speak-at-american-academy-of-ozonotherapy/

Maybe he's ahead of his time, but he's raised a number of my red flags, and I'd say he looks dodgy.
 
Luther Blissett said:
Yes, I watched the first one in which a TENS machine was discussed. That's why I asked the question. So I ask again, what's wrong with using a TENS machine? I genuinely don't understand the objection.
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In that first video they were talking about how the machine could be used detect toxins in different areas of the body... isn't that just nonsense? It sounds like it and I've not been able to find anything that indicates it is anything but quackery. I don't like it when people are making money from medical claims that are unsupported by any good quality evidence, and that seem to be what is happening here, so that's what I think is wrong. Whether or not a tens unit may have some value for pain (and that still seems unquestionable) the treatment presented as 'Frequency Specific Microcurrent' includes many dodgy elements and claims that don't seem to have any good supporting evidence.

Here's a description of FSM which claims that it uses TENS units that operate at 1/1000th the level of current:

Frequency Specific Microcurrent Today

The history of how she did all of this work is told in her books: Frequency Specific Microcurrent in Pain Management (2011) and more recently The Resonance Effect (2017). I first learned about Albert Abrams more than 30 years ago. Some of the famous homeopaths of the golden age of homeopathy investigated and used his machines. When I first went into practice there were all sorts of these devices for sale. They were supposed to help you select the correct remedy for the patient. They were all overpriced and not very trustworthy in my opinion. In 2013 while searching the internet I came across Dr. Mc Makin’s work. It made sense, had some research behind it and was based, in part, on Abrams’ work further expanded by an osteopath/homeopath named Van Gelder. When I noticed that an introductory workshop was being offered in Hartford, Connecticut, I jumped at the chance. At that intro course I could feel the frequencies delivered to the tissues just like I can feel the energy of the correct homeopathic medicine for my patients. I bought a small home unit and treated my big toe with a gout protocol. I don’t have gout but I do have an arthritic big toe on my right foot, a remnant from Lyme disease many years ago. When the treatment was over, I flexed my toes and that big toe let out a loud crack with instant improvement in range of motion. I was convinced. This year when a spare room opened up in my office, I started integrating FSM (frequency specific microcurrent) into my practice.

The state of biophysical knowledge has been vastly expanded since Abrams’ time. TENS units (transcutaneous electrical nerve stimulation) were invented in the mid- 1970s and were later approved by the FDA for the treatment of pain. TENS units don’t make muscles twitch or burn the skin, they block pain signals. They are now available over the counter in drug stores and on the internet. The units used in FSM are cleared by the FDA as TENS units, although they operate at 1/1000th the level of current.

There is actually a science of “energy medicine” best described in books such as James L. Oschman’s Energy Medicine: The Scientific Basis (2016). Just as there is the biochemical study of living tissue, there is also the bio electromagnetic study of living tissue. It is a parallel discipline slowly developing in the background with the foreground being dominated by the biochemical model preferred by big pharmaceutical interests. The history of this science is too long and detailed to be part of this blog. Suffice it to say that we now know that there is a DC microcurrent- nervous system within each of us. Here are two “proofs of concept” that relate to Abrams’ original ideas.
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http://drmasiello.com/2017/09/frequency-specific-microcurrent/
 
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Esther12 said:
That doesn't sound good.

I thought it might be a bit OT to mention that Gordon was the final author of this Naviaux paper, which said 'Edited by Ronald W. Davis':

http://www.pnas.org/content/early/2016/08/24/1607571113.full

I don't know much about Naviaux's work, but his association with Gordon doesn't inspire a lot of faith.
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I'd say exactly the opposite. It shows he was part of groundbreaking research that may just change the way we address the problem(s) we face with ME/CFS.
 
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