Netflix "Afflicted" - ME included

https://www.cbc.ca/news/health/netflix-after-party-epilepsy-1.4805033

 

We should seriously start a thread regarding unreliable Lyme diagnosis and dangerous long term treatments. Since Dr. Gordon was featured in Afflicted and treating Jamison I feel this is relevant.

Page 11:
"A majority of Respondent's patients have been diagnosed with Lyme Disease and Respondent presumes that all pain presentations of these patients, including all ongoing neurological manifestations such as seizures, are a manifestation of Lyme. Respondent therefore, does not perform any additional assessments, such as more detailed work up or a neurology work up, to ascertain other causes of their pain, which might be treatable and reversible".

All these toxic drugs that are administered through picc-lines can cause permanent damage. I know, my best friend died in 2016 from all these quackery treatments that are targeted towards vulnerable and very sick ME patients.

Please feel free to move this to another thread.

 

MD Mats Reimer (has debated ME for years with a BPS approach) writes about the series in The Journal for the Swedish Medical Association.

Pesudodiagnoser - och äkta lidande
google translation: Pseudo diagnoses - and real suffering

In a quiet dark room is a former athlete passive and weak; sometimes he can not even speak, so he writes on the mobile and a computer voice reads. On his shirt you can read 'Ask about ME': ME as in myalgic encephalomyelitis, the misleading synonym of chronic fatigue syndrome. A triggering factor, known as a passant, is that he on the highway drives right into a stationary car. The doctor on home visits tells us that the young patient's neck has been injured in the accident, but we viewers feel that guilt about the person in the other car may be more important.

...

The depicted patients are not very satisfied, and five of the seven have just published a text where they criticize Netflix for having presented their disease as psychosomatic or psychological. But the series does not present them as simulants: it is made very clear that they are suffering. Unfortunately, after seven episodes, we don't get any wiser as of how to treat patients with severe functional disorders. Where can they turn?

 

What a tit!

 

At least the Swedish title is clearer with their intent. To be fair to Reimer, he did mention that participants had raised concerns about the documentary.

Hasn't Reimer been saying he's going to write about the details of PACE for years, but never gets around to it?

 

Yes. Same guy. He has also tried to promote Lightning Process in Sweden.

 

Actually there is a "Post-Treatment Lyme Disease Syndrome"


:

https://www.cdc.gov/lyme/postlds/index.html

 

They key here is that "The cause of PTLDS is not known." Whereas some doctors are diagnosing "chronic Lyme"(meaning infection is still present) and pumping ridiculous ammounts of antibiotics, etc. They're usually not diagnosing PTLD. It may be true that some residual borrelia are left in the body, but it may well be something very different, just like with ME and viruses.

 

I feel like PTLDS people can end up a bit trapped between Lyme quackery and dismissive treatment in mainstream medicine. I get the impression that some 'mainstream' doctors can be extra dismissive of PTLDS just because of its association with quacky Lyme stuff. We need to get better at acknowledging that some people can be messed up by infections in ways we don't really understand, and don't have a good way of treating.

 

Some patients didn't even have Lyme to begin with let alone 'chronic lyme'.

 

Julie Rehmeyer:
https://twitter.com/user/status/1034131749687549952

 

One of the doctors featured in Afflicted has blogged about it

http://northwestfunctionalneurology.com/netflix-afflicted-doctor-speaks-out/

 

So he is happy to admit he is a phoney doctor.
Nice to be able to fix things on a neurological level.

 

blog:
AFFLICTED: An exercise in ridicule
by Erica Verillo

rest of article here:

 

I don't know much about Lyme disease so have no particular take on it, but Borrelia is a type of bacteria called a spirochaete. Syphilis is also this type and is notorious for remaining in the body and causing devastation down the years. It was not always apparent in the early years but tertiary syphilis where it infects the brain was a dreaded illness.

The idea that Lyme can form a persistent disease is not far fetched but a scientific possibility. Unfortunately if mainstream medicine does not take a disease seriously the door is open for the quacks to flood in.

 

I thought I would add that I have heard some people in my country who claim to have Lyme after a re-diagnosis using private tests say they still use ME or CFS for disability applications.
I have to say I find this a bit frustrating when they have stopped supporting ME or CFS causes, and indeed don't show much interest in donating to or fundraising for Lyme disease/tickborne-illness-related research despite often spending large sums on treatments.

 

Huffington Post: Netflix' "Afflicted" And The Constant Misunderstanding Around Chronic Illness

A long article by Jenna Birch with several patients stories, expert opinions and even a statement from the executive producer of "Afflicted":

“We are saddened and upset by some of the reaction to the series,” he said. “Our intention was to give the world a compassionate window into the difficulties of patients and families suffering from elusive and misunderstood illnesses, to humanize their struggle, and to show that struggle in all its complexity. The participants in ‘Afflicted’ showed incredible courage in sharing their stories and we respect the thoughtfulness with which they have entered the online discussion, even when they have been critical of us. The conditions they, and others, are suffering from are real and deserve more attention.”

 

It really wouldn't surprise me if those behind the series cared so little about the impact that they had on the lives of others that they were surprised by the response Afflicated got. If they'd made any real effort to understanding the issues in this area then they would not have been. Just the list of diagnoses they'd selected was enough for me to know that what they wanted to produce was something that would encourage people's worst impulses.

 

Great article.

 

I don't believe him/her.

The documentary they produced is proof that a 'compassionate' framing was not the intent, validated by the patients' reactions.