Another ME death on April 29th 2019: Jacquie Beckworth aged 23

Countrygirl

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https://lailasnews.com/chronically-jaquie-death-how-jaquie-beckwith-death-happened/

Chronically sic [ill]Jaquie's death: How Jaquie Beckwith death happened

It is with great sadness that we tell you of the passing of our December 2018 Warrior of the Month Jaquie.

We are including our February 2019 Warrior of the Month, Abby’s, words about Jaquie below. Abby nominated Jaquie last December.

“Jaquie Beckwith was one of the most kindest, strongest, sweetest person I’ve ever had the pleasure of knowing.

Sadly on April 29th she passed away. She was December’s Warrior of the month but she was a warrior every single day. When I really started getting sick I was so scared. I felt so alone and didn’t know what to expect on this journey.

Then I found Jaquie’s YouTube channel. Since then I have been lucky to have gotten to know her and to call her a friend. She has helped me every single day coping, learning, keep moving forward, and being so kind. I am so heartbroken she is gone, as are many people.

Jaquie, we will all miss you so much and I’m so sorry this happened so unexpectedly. I hope you are now free of pain and that your family and friends can begin to cope. Sending you so much love and thank you so much for being my absolute role model.”

We are sending our love to Jaquie’s friends and family during this time. Please keep them in your thoughts!
Please be warned that the following is particularly distressing so you may not wish to read it.



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valentinelynx

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While her passing is sad, Jaquie, who reported extensively on her illnesses, never reported to have ME/CFS. She died from a rare complication involving a feeding tube.
Hmm, well, I wasn't aware of Jacqui's work until now, but I just looked over her YouTube channel. As I expected upon hearing what happened with her feeding tube, she had Ehlers-Danlos. She also apparently had POTS, MCAS & gastroparesis. So, whether she met the criteria for ME/CFS, I don't know, but based on her comorbidities, I think we can certainly welcome her to our club...:love:

What a terrible way to die & so young. I'm stunned that there was nothing they could do. She must have been too septic from the dead bowel to survive the bowel resection operation. Sorry, so sad :cry:
 
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Her death is tragic and I have been following her story over the last few years.

There is strong evidence to suggest that Jacquie suffered Munchausen syndrome - or Munchausen by internet and died as a result. Her doctors wanted her feeding tube out but she refused. She also inisted upon and doctor shopped through 5 surgeons for multiped abdominal surgeries which made her susceptible to the complication which ultimately killed her. She was one of the main topics on a forum discusses munchausens.

This does not make her suffering any less and I don't want/mean to speak 'ill of the dead'.

This are her 'timelines' which document inconsistencies which suggest Jacquie suffered from Munchausen's.
 

Judee

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I think the medical profession would be more than happy to label at least 90% of us as having Munchausen's because we've all searched for answers and many of us have had an inkling of our diagnosis before doctors did and researched what treatments could be helpful for those conditions with the hope of somehow feeling better.

They said she was looking for IV fluids before she got her diagnosis and she didn't get that until September 3rd. The key is she did get a diagnosis. Medical people said therefore that she had POTS so how can it still be Munchausen's?

Also many of us have also gone from doctor to doctor to try and get someone to believe what is happening to us so I don't think "doctor shopping" is an indication of Munchausen's either although I've read things written by people like Dr Michael Sharp which indicate that doing so is suspicious and that none of our concerns should be investigated because that just encourages us in our "delusions." :grumpy:

If there were fewer doctors so willing to follow Dr Sharp's advice, maybe we wouldn't have to "doctor shop."
 
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valentinelynx

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I agree that we must be cautious in applying the diagnosis of Factitious Disorder (formerly Munchausan Syndrome) in which a patient falsifies symptoms of illnesses to obtain attention and care (distinct from malingering, which is done for money or other economic gain). As we all know, many have misapplied this diagnosis to patients who are ill with ME/CFS or other illnesses that are difficult to diagnose and treat. However, it is important to realize that Factitious Disorder does exist, and can be fatal. People with this disorder actively seek invasive treatments, and implanting them with invasive lines like ports, PICCs or G or J-tubes provides an easy path for starting severe infections or other complications. Also, patients with Factitious Disorder can have other illnesses. For example it's possible to have POTS but also to exaggerate or falsify other symptoms. @Chelby's extensive analysis of Jacquie's self described medical history is very interesting and sad. For example, testing at Mayo showed very little delay in her gastric emptying and she was diagnosed not with gastroparesis, but with impaired gastric accommodation with a rumination (regurgitation without vomiting) component, which is a much less severe diagnosis. Apparently, she rejected that diagnosis and pursued treatment for gastroparesis, including the placement of a G-tube.

The bottom line is that we must be very careful in applying the label of Factitious Disorder, yet should be equally careful to not miss it when it is present. To either misapply this diagnosis or to miss it risks tragic outcomes.
 

starryeyes

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RIP Chronically Jacquie.

Someone asked why she was tube fed? I believe it was because she was suffering with distressing intestinal symptoms on the daily. She felt so much better being tube fed, and she did most of the work involved in her tube feeding herself.

People think she had munchausins probably because she was very upbeat, positive and pretty. Sound like a familiar scenario to anyone here? But after she did an activity or two you could see that look in her eyes that she was fading out fast and she often needed to collapse on her couch or her bed. That look of sheer and utter exhaustion for doing just a few things during the day - you know you can't fake that time after time, video after video.

She didn't have ME as far as I can tell but she was going through similar struggles as those of us who deal with debilitating chronic illness all do.