Topic: Lyme pts = identity as a fraud? New York Magazine article
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's not just that the author criticizes activism - or even learning about one's health and what helps, taking action, etc.
she is claiming that this "identity" that many patients with "chronic" lyme take on in their fight for validation or treatment is not based in reality and is, quite frankly, living a lie, being a fraud, basically.
She is not so much saying that the illness has become their identity but that the IDEA of some illness that really does not exist has become their identity.
Maybe It’s Lyme: What happens when illness becomes an identity?
By Molly Fischer - New York Magazine, Health - July 24, 2019
So far, seven reader comments follow article. (though most echo the author and are very dismissive)
My basic take on the article:
Very extensive article. At so many turns, the author really undercuts patients, doctors, treatment, and has determined that their "need" to have chronic lyme as a major part of their very identity,
where she determines / announces / is so sure that there is no proof that it's even something real, as a chronic infection - that the patients' misplaced "need" is the problem itself..
These "undercuts" that kept popping up won't be noticed by anyone who has never has a long bout of lyme or years of chronic lyme . . . but they will be apparent by those who have. Sigh.
I kept trying to sweep my perception of twisting her meaning, trying to "listen" to certain phrases as being objective. But there are just so many instances where the reporting is just not objective. She has settled on a view with the IDSA.
Good for her she does explain ILADS and their physician training but, again, that is provided as an example of wrong-doing to patients who have psychological need of a "chronic" lyme identity. Oh, my!
She did a lot of research, much more than the average of most articles -- but it appears she was biased from the get-go again the possibility of chronic / persistent lyme and did not venture into all the research she could have, not by any means.
The standard IDSA notions are frequent answers when she seems to ask a valid question. Big sigh.
Still - or yet - it's important to read this. It will take a while, though. -
[ 07-26-2019, 11:43 AM: Message edited by: Keebler ]
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
This article is really painful, but we should all read it. She has a deep-seated grudge, or was directed by some one, or some organization to go deep and nasty. I don't think she missed anyone to attack! I rather doubt most people will read all the way through this piece.
I hope there are lots of rebuttal articles being written. Op-ed pieces in answer to articles don't get the coverage they should, though. Nor do comments on-line, though I will write one, and hope you do too..
-------------------- Ann-OH Posts: 1603 | From Ohio | Registered: Aug 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Todd Murray (author Polly Murray's son who had lyme and was in her book) apparently replied - with a scathing account of those who are "crazy" determined they have chronic lyme, etc.
His post does not truly account for the science or reality of it all and he paints all patients with the same ugly brush. And he's a doctor now.
He describes his extended treatment as a child but gives no credit to the antibiotics. He basically said he got on with life and he has a bad taste for those who do not.
He ignores that many simply cannot just move on in life with such illness - since it's not that big a deal.
It sounds like he is criticizing the work of his mother to find out so much about lyme and push for his treatment..
He ignores the complexities and realities of lyme, as well as the other tick-borne infections that usually complicate. He ignores the kinds of combination approaches of current day that have often really helped many.
What the article's writer and he fail to mention is that for most with chronic lyme, they also have other tick-borne infections that require different Rx approaches entirely and
that most are also diagnosed very late. They tend to imagine that everyone with lyme gets diagnosed right away and is given treatment and that should work.
It's not like that. But they fail to even consider the complexities.
The critics in this article and comments often mention some of the risks of antibiotics yet fail to consider that
untreated tick borne infections are much more dangerous
that most LLMDs also incorporate not just combination of specific Rx )far beyond just doxycycline as the typical too-low of a dose),
also rotation periods so that the most effective treatment might be achieved
And that most LLMDs also incorporate liver support methods to help minimize some of the stress / risks form Rx treatment.
Critiques also fail to mention that ILADS is also still very involved in research to find better treatment options / combination / detection. -
[ 07-25-2019, 11:17 AM: Message edited by: Keebler ]
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
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Interesting article. I agree with some statements, but not many.
It took 18 months for a diagnosis for me. Simply, because Md's refuse to test me saying that there was no Lyme in Illinois.
Do I have damage that is likely permanent? Yes, I do. Do I know that all the bacteria have been killed? No, I don't.
Whatever the reason for the symptoms, I live with this every day. I try not to dwell on it although some days I do a better job than others.
I am not Lyme. Lyme is not me. But I still have symptoms after 16 years.
I have been fortunate that most people in my life are kind and understand I don't always feel well.
I am fortunate to have good neighbors and friends who help me when help is needed.
My constant prayer is that I and all of us who still suffer will one day be well and that medical research will continue.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8916 | From Illinois | Registered: Aug 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Hiker,
It's good to recognize - as most with chronic illness do - that a well rounded life still matters, however that can work out.
What bothers me most about this article is what I just added to my first post:
It's not just that the author criticizes activism - which I see as learning about one's health and what helps, taking action, stepping up to the plate, etc. She claims it's a cult like endeavor, though stops just short of using that term.
She is also claiming that this "identity" that many patients with "chronic" lyme take on in their fight for validation or treatment is not based in reality as the IDSA has explained to her..
She is not so much saying that the "chronic" lyme has become their full identity but that the IDEA of some illness that really does not exist has become their identity. That it's all in their heads.
She does distinguish between lyme and "chronic" lyme - the former she recognizes; the latter she dismisses. This is how she starts to gaslight the reader, though.
There is a bit of gaslighting going on here and those not affected by lyme might be fooled since she does include so many actual facts about lyme - still, only as the uncomplicated, simple view of it as just a blip on the screen.
Most readers will not be able to distinguish the truth from the lies that she also plants here, the same lies the IDSA has been sowing for years.
This is not an article that intends to educate about the complexities of lyme when it has become chronic. It is to totally dismiss the very notion of it & those dealing with it. -
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Several excellent new comments - though a couple also praising the writer as truth-finder of sorts while also tossing vile attacks on patients.
It's helpful to read the reviews - though the print is tiny and there is no breathing room for the eyes, so it's a strain to copy & paste and change font and type face but some are well worth it.
one new comment that stands out - since this is about the 3rd article just this week that blasts "chronic" lyme, doctors and patients.
Posted: ameadors1 - approx. 11 pm ET 7-25-19
Man. I gotta hand it to the writer. Or should I say the “writer.” (I’m highly dubious that the writer is a single individual and/or a new initiate into the Lyme Wars.
And, coming on the heels of that New York Times hit piece, it really feels like part of the anti-Lyme agenda.)
Regardless, that is as compelling an anti-Lyme narrative as I’ve read to date. It satirizes all the most vulnerable parts of the Lyme zeitgeist for sure.
There was a time when this article would make me really angry, but this “Lyme Warrior” (just kidding—I never call myself that because I’ll never give Lyme that power) is fortunately in a better place.
(end comment from ameadors1 ) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I wanted to respond but can't figure how to sign up.
The article is a fraud.
They even have the gall to say at the end of this glorious article to subscribe to their New York magazine. After reading an article like this, I'd run the other way!
[ 07-28-2019, 06:07 AM: Message edited by: Robin123 ]
Posts: 13117 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Robin,
I don't know. I can't figure out that stuff either.
49 comments now, still most are just horrid and remarkably cruel, seemingly on purpose. The hate squad is out in full force in this comment section. More than usual.
A few accurate ones, though, from people who seem to know the bigger picture to all this.
#49, excellent assessment in my view:
by sheilas - on 7-28-19 approx. 4 pm ET
The identity aspect of being ill, derided by Molly Fischer in this article arises in large part from
the way that Lyme patients have been treated by mainstream medicine
- marginalized, with their experiences denied.
This has occurred all too often at the pen of mainstream journalists like Malloy, who exploit, distort and sensationalize their suffering for the sake of a "good read."
According to the Stanford Encyclopedia of Philosophy: “What is crucial about the 'identity' of identity politics appears to be the experience of the subject,
especially his or her experience of oppression and the possibility of a shared and more authentic or self-determined alternative."
A more responsible, thorough journalist would have balanced her article by citing the increasing body of published research which documents persistence of infection.
She would have acknowledged the inadequacy of standard diagnostic tests for Lyme disease, which contributes enormously to uncertainty over which patients become or remain infected.
She would have realized that the term "chronic Lyme," is imprecise,
and that patients with delayed diagnoses may run more complex courses of illness because they were not treated promptly.
Perhaps the most crucial question Malloy fails to address is why mainstream medicine has so utterly failed these patients,
driving them to seek the alternatives she portrays with such derision. Shame on this author and shame on New York Magazine.
(end article comment from sheilas) -
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
MUST READ.
Jordon Younger is the blogger behind the popular wellness and lifestyle blog "The Balanced Blonde."
Jordon was featured in Molly Fischer's article. Here is Jordon's response to Molly Fischer.
posted
Todd Murray would like to clarify regarding his comments on New York Magazine article: I did not mean to be dismissive of all chronic Lyme, nor to suggest that testing is perfect, or that there cannot be chronic infection. On the contrary, I believe there is evidence for persistent infection, and a need for more accurate testing. I also have recently learned more about the variety of strains of Borrelia which may be causing disease. Certainly I do not believe that anyone who complaints or chronic Lyme is crazy. My point really should have been that the science of detecting acute and chronic infection needs to improve, and treatment protocols needs to be evidence-based but need to consider that persistent infection despite "standard" antibiotic regimens can exist. I am encouraged by recent evidence showing that a triple antibiotic regimen may eradicate dormant Borrelia which could survive standard treatment regimens. As an ED physician, yes I do see patients with mental illness, but this overlaps with any disease process. I believe that physicians do need to treat based upon evidence, but also believe that the evidence on Lyme has not fully caught up with the reality.
Posts: 1 | From Massachusetts | Registered: Aug 2019
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