Netflix "Afflicted" - ME included

Anything's possible. I feel like the more research I've read that more sceptical I've become of everything though, and there were a number of things on Gordon's website that raised concern. Who knows though - even White has done some decent research.

 

If I remember correctly @Esther12, I think you said you hadn't even watched the documentary? If so, then you didn't see Gordon's caring manner and assessment of Jamison.

Just because Gordon may offer some things that may seem or even be as you say, 'dodgy', doesn't mean he's using any of those in Jamison's case. As Jamison mentions in his blog, he's tried a lot of things, many of them 'out there'. But IMO, that's his business, his right, and not ours to make judgements on his choices.

 

I hope I never have reason to watch Afflicted! I'm not criticising Gordon for his manner, but for some of the treatments he promotes on his website. And I'm not saying that Jamison doesn't have a right to do what he decides for himself, but at the same time, if his blog is promoting a practising homeopath as his medical expert then I think it's okay to point to that as a weak point in the blog, particularly when the response to Afflicted has already illustrated how relying on 'out there' experts can engender distrust and scorn from some of the public.

I do seem to have been criticising a lot of stuff today though. I think that's more because there's so much annoying stuff around Afflicted than because I'm just in a bad mood, but who knows?

 

Look at the title: ‘Treating Lyme disease with a Tens machine’. It is not a science based treatment. It is not a national treatment guideline for all ME patients. It is a fee for service for desperate patients willing to spend a couple grands. There is no evidence, just hypothesis. And while the physician is gaining insight from experiments from his patients, patients are paying the doctor for treatments that are not based on science and that are not likley to pan out, just empty their walllets.

 

Eric Gordon is an M.D., not a 'practising homeopath'. He may use homeopathic remedies from time to time, but I highly doubt that's his first mode of treatment. In fact, the main point he made about Jamison's case was that may be a result of the horrific car crash he was in, and suggested they start investigating it from that viewpoint, i.e., potentially significant physical trauma his spine, neck, etc..

Anyway, everyone's upset. But this thread is about the documentary...not one patient and the doctor he's chosen to help him. I hope your mood improves.

 

I'm not saying that it has widespread support, that I personally support it, or whether giving pain relief to people with something called 'Chronic Lyme' with a TENS machine is the best way for people to spend their money.

I'll spell out how I view this situation to make myself clearer.

1. A documentary is made.
2. One of the participants of the documentary is a patient with M.E.
3. The Documentary is found to be manipulative.
4. The participants complain about this.
5. People with knowledge about the situation review the documentary.
6. The reviewers generally agree with the complaints.
7. The documentary is described as a modern day freak show, produced for people to be amused by other's suffering.

Then the bit I'm confused about happens.

8. M.E group(s)? review the film, and propose a community response.
9. But Quackery!!!
10. We get written responses and videos showing the harm that was done to the participants.
11. But Quackery!!!
12. Jamison posts a blog detailing, lies, manipulation, unnecessary surgical procedures being performed for camera, private detectives searching through social media, concocting deceptively edited footage of family members to make it look like they think their own children are mentally ill, the ignoring of pre-screened psychiatric evaluations that argue against the final documentary editing.
13. But Quackery!!! TENS machines!!!

I don't understand what 9,10,11 and 13 have to do with the first 8 parts.

I'm not bothered if someone advocates sitting with a banana on their head shouting "bazinga!" is the cure for cancer. If they were manipulated into the first stages of this saga, I think this is morally wrong, and will stand with them, even if they are wrong about everything in the world.

Because I don't view the banana wearing to have much to do with the complaints of a vulnerable person being used as entertainment. In fact, I would view the banana wearing as a sign that they were especially vulnerable and shouldn't be abused by society.

If we have to wait for perfect victims of this kind of manipulation, we'll be waiting forever because perfect victims do not exist.

I haven't seen any official group(s) saying we have to advocate for banana wearing in order to complain and support the victims. All I've seen is official group(s) saying that we shouldn't stand for vulnerable people being abused.

I think all the talk about bananas is in fact bananas and I don't understand why it is happening.

Or, in other words, my view is that bank robbers shouldn't be raped in prison, and if they are, I'll complain about the rape, because the bank robbery has no bearing on whether the rape should be protested.

¯\_(ツ)_/¯

 

From what I can see of the material @Esther12 linked to this has nothing to do with traditional TENS. It is pure quackery. I have had concerns about the level of Dr Naviux's work for a while but I am pretty surprised that he published with Gordon. This leaves that entire programme with no credibility for me.

 

To be fair i have not watched ‘Afflicted’, and considering the responses here and on social media, I am not planning to watch it. I am very sorry that a very vulnerable patient population is being used as entertainment and I am very sure that the patients who gave their time and energy and never exepcted to be played this way.

Esther raises some very valid points in which if we do want to be taken seriously as a patient population, then we need to put our scientific hat on and start discriminating what is science and what is money-making fad treatments that may feel good and that may make you feel cared for but have no effect on your disease other than a placebo response. After all this is the ‘Science for ME’ forum.

People discuss ‘treatment’ as it pertains to ME when they mean self-management. Or else they mean symptom management. There are no treatments. When a treatment will be approved for our disease, it will have passed through phase 2 and 3 clinical trials and become FDA approved, which is the most appropriate channel for a drug to be approved. And when that happens, all of the doctors around the world,will know there is a treatment available. Mainstream doctors do not offer sham treatments for their disease, and they do not collect money from their patients for unproven therapies, particularily in the context of socialized medicine.

Each and every one of us has a right to do whatever we want for treatments, and we also have freedom of speech for a while longer (!). I think it is fair to point out non-scientific so-called treatments- because the longer we keep our head in the sand collectively, the longer we wait for real treamtents to come up.

 

Yes, what's wrong with that? I think an orthopaedist used this or something similar when I had issues with ligaments, and it was effective. I was able to make my hiking vacation.

 

A general position I have had for a long time (long before Afflicted): I suggest to people they don’t mention alternative therapies if doing interviews. For many observers, if one hears someone has improved by a treatment you think has no biological properties, it can make one doubt the validity of the condition.

Given how much scepticism about ME, I think this is something we need to consider more than many other conditions.

 

From the responses I've seen, it looked like the quackery played an important role in leading to some people enjoying the show as a form of freak show. Even if that was not the case I still think that there's value in noting when it is that certain doctors seem to be promoting treatments or testing lacking in a credible evidence base.

I'm certainly not saying that use of quackery means that there were not also serious problems with the way the show was produced.

 

more reviews:

https://www.imdb.com/title/tt8792570/reviews?ref_=tt_urv

 

But I'm asking why this is being brought up in the context of an organised response to the documentary. How is it relevant to the points I made?

There are public responses saying that Jamison or Jake should be punched if they call themselves disabled. A poll was set up asking if Jamison was really sick. He had his own hashtag on twitter for people to bully him. If he came here looking for support how do you think he would feel in the midst of being pilloried internationally for doing something that took sacrifice and was to try and improve our situation?

So some people don't like his choice of doctor. And?

I'm fine with criticising doctors, I'm fine with criticising scientific claims. But why does it have to be done on this thread, at this time, in this context? I'm just asking for a bit of empathy for the guy.

 

Also, while I'm ranting away, try reading this twitter thread about a similar situation, and note the damage that has been done, and people's reactions.

https://twitter.com/user/status/1031477509542567936

 

This is happening because of the invention of CFS. Fatigue is a symptom but has been used as a diagnosis for years now so it is no wonder that many people are misdiagnosed with it. Tragically, this includes diseases which can be treated.

CFS has never been one illness and calling it ME/CFS hasn't helped. I have always found it ironic, in a tragic sort of way, that I never experienced much fatigue in the first few decades of my ME, certainly not enough to have less than 50% of my previous life, yet suddenly they changed the name and definition as if I had. Try telling a doctor after that that you don't feel fatigue.

 

Sigh, yes, they don't get it and think you are making it up. Two months without fatigue but still very limited energy was an eye opener for me.

However its not clear even ME is one illness. It might be two or more, and it might be that its a special case of a larger family of illnesses. This is currently under investigation as sepsis has very similar biochemistry, and sepsis might be only the tip of the iceberg. Burns survivors have similar biochemistry, and I suspect many post physical trauma patients might too, including patients who have had chemo, cancer, Lyme, Giardia, SARS and so on.

 

This July was the 50th anniversary of my becoming ill. As I have become elderly, more and more of my life experiences have become "history" to other people. The disease I have, and share with other people, was best described as "able to lift a bag over potatoes over head but collapses lifting a spoon to lips five times"

The Workwell findings on a 2 day CPET testing also match my experience. This disease was called ME but has become more muddled over the years. Whether what is now included under the name is the same thing I do not know and maybe when a diagnostic test is developed it will not even include us but this experience of illness is very specific and is not shared with other diseases.

I have known many sick people in a lifetime and many of them experienced much greater fatigue after exercise than I do. I have small collapses after small efforts, half an hour paralysis after cleaning my teeth one day, able to cook a meal the next.

 

@Luther Blissett you may be disappointed of the direction of the discussion that ensued, but people here have a right to discuss on the topic, and others have a right to agree or disagree and add their own contribution.

As an aside i do have empathy for all patients suffering and living through this nightmare.

 

Daily Mail: Stars of Netflix series about chronic illness slam the show for making them look "crazy" - after off-camera tests proved they are sane

Regardless of what is presented by Afflicted, or the judgments made by viewers watching the series, its subjects maintain that the producers edited out important elements their story in order to focus a narrative on their psychologies.

'Many of our concrete diagnoses and test results are excluded from the series,' they wrote in their collaborative Medium essay.

'Our conventional medical doctors were not consulted during filming. Even our own skepticism about some of the alternative treatments we pursued (sometimes with the help or at the suggestion of the production company) was carefully edited out, all to craft the most sensationalist narrative possible.'

Daily Mail Online contacted Doc Shop but the production company had not responded at the time of publication.

 

Huh?!