Netflix "Afflicted" - ME included

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.

 

I’m very sorry to hear about your cancer, Jo. I didn’t know.

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.

 

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.)

 

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

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.

 

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.

 

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).

 

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.

 

Dr. Eric Gordon also treats Whitney. JD, "I trust him with Whitney's life. This man is trustworthy".

 

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?

 

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.

 

What's wrong with using a TENS machine to treat chronic pain?

 

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.

 

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.

 

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:

http://drmasiello.com/2017/09/frequency-specific-microcurrent/

 

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.