User talk:Cuvs

A belated welcome!

The welcome may be belated, but the cookies are still warm!

Here's wishing you a belated welcome to Wikipedia, Cuvs! I see that you've already been around a while and wanted to thank you for your contributions. Though you seem to have been successful in finding your way around, you may still benefit from following some of the links below, which help editors get the most out of Wikipedia:

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If you don't already know, you should sign your posts on talk pages by using four tildes (~~~~) to insert your username and the date.

I hope you enjoy editing here and being a Wikipedian! Again, welcome! – Lord Bolingbroke (talk) 17:27, 23 August 2021 (UTC)

WikiProject Climate Change

Hey! I saw your note on @Femkemilene's page and wanted to invite you to participate in the WikiProject. In particular, we have a list of actions at: Wikipedia:WikiProject Climate change/Small to medium tasks -- which could help you find something easy to get started with while you learn more about Wikipedia. I hope you join us! Sadads (talk) 13:09, 25 August 2021 (UTC)

Thank you so much for reaching out, Sadads! I joined the project and hope to help out if I can. : ) Cuvs (talk) 23:04, 28 August 2021 (UTC)

Ah brilliant! Hope that you keep editing around different topics -- we have a lot of gaps and need people to pay attention to the many different aspects of climate content, Sadads (talk) 13:25, 29 August 2021 (UTC)

Be more careful

I'm going to AGF that you didn't mean to vandalize the Chronic Lyme disease article with this huge deletion of properly-sourced content, but the effect is the same, so I'm going to place a vandalism template below because it has good information for you. I see that you did try at times to soften the wording and tried to improve the article, but you went way too far. NPOV does not mean we neuter biased points of view and language when it is backed up by RS. Just like the RS we cite, we have a bias against pseudomedicine, so we try to document the POV of the sources, warts and all. We do not censor those sources.

Please refrain from making unconstructive edits to Wikipedia. Your edits appear to constitute vandalism and have been reverted. If you would like to experiment, please use your sandbox. Repeated vandalism may result in the loss of editing privileges. Thank you.

For more about how we deal with biased sources, read my essay here: NPOV means neutral editing, not neutral content. -- Valjean (talk) 02:51, 14 December 2021 (UTC)

Hi @Valjean, Thanks for your message & extensive, high quality contributions to Wikipedia. I appreciate you giving me the benefit of the doubt & recognizing that I indeed had no intention of vandalizing the Chronic Lyme disease article (or any wiki page).

I realize that deleting the "Identity" section without a discussion was unwarranted & am sorry for doing so. Based on an extensive review of Lyme research & several hundred interviews that I've conducted over the last decade, I think that the Chronic Lyme disease page ought to be significantly revised. However, I fully, 100% agree that I (obviously) have not put in the hours required to improve, explain, discuss, cite, revise, & rewrite the Chronic Lyme article & I am again sorry for the sloppy pseudo-editing that I did. I currently don't have time to help truly improve the Chronic Lyme article so have no intention of making any more changes. But given that we seem to share many of the same values, including full dedication to the scientific method, countering misinformation, & Wikipedia's mission, you may find some of the below resources interesting & informative.

Lyme: The first epidemic of climate change (book)

Nature Journal review of Lyme: "'This is an illness that has been minimized, underestimated, & politicized.' Thus says investigative reporter Mary Beth Pfeiffer on Lyme... As Pfeiffer’s hard-hitting study reminds us, non-specific symptoms & other complexities make tackling Lyme a formidable challenge. She nimbly interweaves numerous strands of research — into the influence of climate change on the Lyme invasion, the disease, the pathogen, the vectors & the harrowing impacts borne by some sufferers."

The Royal Society of Biology review of Lyme: "Pfeiffer is immune to calls of being a ‘Lyme loony’ & presents a thoroughly researched and extremely well-presented case to raise the banner for patients who can suffer painful and debilitating symptoms for months, years and even decades... Hopefully, Pfeiffer will raise significant awareness of Lyme to the attention of health authorities, who currently underestimate the real significance of this disease. This book should be instrumental in achieving the required change of perspective."

Columbia University Irving Medical Center: Chronic Lyme Disease vs. Post-Treatment Lyme Disease Syndrome (article)

Quote from Columbia article: "Patients typically use the term chronic Lyme disease to describe the cluster of symptoms that started after getting Lyme disease and that persist despite having received a course of antibiotic treatment which has been deemed curative by the Infectious Diseases Society of America. Patients say, "I'm not cured. I have symptoms now that I never had before Lyme disease. I'm fatigued 90% of the day. My muscles ache. My brain is in a fog. I can't think clearly any more. I'm super sensitive to light and sound. What is going on? Chronic Lyme disease does exist - I'm a living example of it!"

If a patient is treated early at the time of the erythema migrans rash, then the risk of getting chronic symptoms is much lower; most people recover fully. Although the infectious disease community dislikes the term chronic Lyme disease because to them it implies that chronic infection is the known cause, the medical community is quite comfortable with what they see as a more "etiologically neutral" term: Post-treatment Lyme Disease Syndrome (PTLDS). The word "syndrome" means that there might be many different causes of the post-treatment symptoms; these causes might include persistent infection, persistent immune activation, damage from the prior infection, or changes in the brain chemistry that leads to abnormally activated pain or mood pathways or altered cognition. The medical community acknowledges that approximately 5-20% of patients may have chronic symptoms after getting Lyme disease, often ones that are quite disabling.

Whatever one calls it, the experience is the same. Most often these patients experience profound fatigue, pain, and/or cognitive impairment. Mild to moderate levels of depression and anxiety may also accompany these symptoms, as the functional limitations can lead to social isolation, inability to work, and loss of sense of one's identity as a provider, caretaker, or friend."

Johns Hopkins Lyme Disease Research Center: Lyme Disease Treatment and Prognosis (article)

Quote from Johns Hopkins article: "Most patients with early Lyme disease infection recover with antibiotics and return to their normal state of health. However, some patients suffer from ongoing or recurrent symptoms related to Lyme disease despite standard of care antibiotic therapy. The persistent symptoms in Lyme disease can have a large negative impact on an individual’s health and quality of life. Patients often call this condition chronic Lyme disease, although an agreed upon clinical case definition for chronic Lyme disease has proven difficult to reach a consensus on...

Lyme disease encompasses a range of biologic processes and disease manifestations. Patients are often referred to the Lyme Disease Research Center for evaluation of chronic Lyme disease, an umbrella term that encompasses many heterogeneous subsets of illness. Examples of defined Lyme disease subsets include Post Treatment Lyme Disease (PTLD), and Antibiotic Refractory Late Lyme Arthritis. The mechanisms of these Lyme disease conditions are different and effective treatments need to be tailored accordingly."

The Ezra Klein Show: What Living "At the Edge of Medical Knowledge" Reveals About American Healthcare (podcast, New York Times)

Lyme Disease Is Baffling, Even to Experts (article, The Atlantic)

How I Became a Sick Person by Ross Douthat (opinion, New York Times)

The Deep Places: A memoir by Ross Douthat (book)

Thanks again for your message & wishing you all the best -- Cuvs (talk) 18:13, 14 December 2021 (UTC)

Currently, we cover this subject here:

• Chronic Lyme disease (a dubious "diagnosis")
• Lyme disease#post-treatment Lyme disease syndrome (PTLDS) (a short paragraph about a recognized syndrome)

Quote from Columbia article: "Although the infectious disease community dislikes the term chronic Lyme disease because to them it implies that chronic infection is the known cause, the medical community is quite comfortable with what they see as a more "etiologically neutral" term: Post-treatment Lyme Disease Syndrome (PTLDS)."

It's a shame we only devote a single paragraph to PTLDS. That might be a good project to work on. -- Valjean (talk) 18:40, 14 December 2021 (UTC)