Chronic Lyme Disease controversy

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"“Chronic Lyme disease is a rejected term in American medicine. The question is, why?” Pfeiffer says in The Quiet Epidemic.

“A core group of people who have essentially monopolized the field and people have all sorts of suspicions as to why that is," filmmaker Lindsay Keys said. "It could be that they're protecting their technologies that could be enormously profitable, it could also be their ego, how do you admit that you've been misleading the world for 40-plus years?”

“They're also protecting their grant funding as well… Funding needs to go to the right people and it needs to go to new thinking, and used to support new ways of thinking. We need outsiders to mediate this situation because right now, it's just stuck and it's been stuck for decades.”
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https://news.yahoo.com/hot-docs-2022-th ... 07022.html

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COVID-19 bringing more attention to chronic illnesses

Now, amid the COVID-19 pandemic, there have been more conversations about chronic illness, including what’s been dubbed “long COVID” and possible lasting effects of the infection, in addition to the public being able to more easily see just how varied each person’s response to an infection can be.

“It's really hard to understand how these viruses and bacteria are influencing individuals, everyone's immune system’s different…and there's so much that we don't know about what causes long COVID, in the same way that there's so much we still don't know about what causes chronic Lyme disease,” Daria Lombroso said.

“I do think that this is sort of ushering in some ways, a new model, of how we think about disease and how we think about chronic illness,” Winslow Crane-Murdoch added. “I think that Lyme disease has suffered from the fact that…people get dismissed and then they go home and suffer in silence.”

“Because there has been such a large amount of people getting sick with long COVID at once, I think it's going to unlock the potential of making great strides in a number of chronic illnesses, which is hugely important.”
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It's interesting to hear Lyme disease is a controversy outside Australia!

We have bush ticks in regional bushland in Australia and if you are not careful they fall like rain on your head like spores attaching themselves and suck blood.

Not sure why the medical field consider it a conspiracy theory?

Those of us who have joined the chronic illness and/or incurable illness communities have long found the US of America's medical-industrial complex to be populated by great numbers of egocentric asshats followed by an only slightly lower percentage of arrogant knobs.

Yes but why the resistance to recognising Lyme disease exists? I've watched countless documentaries on Lyme disease in Australia and the medical fraternity continue to claim there is no evidence it exists?

Because not every minute detail and factor about it is so in-your-face obvious that you could drop it on a platter in front of a preschooler and they would understand it, and because doctors are natural born dumb machines - medical school garbage in, medical "care" garbage out.

Buy, hey, what is my opinion worth, I myself have 3 different things it has taken multiple decades for any meaningful portion of American health care to admit that, yeah, that's actually a thing.

All I can do toward logically answering your question about the contention is provide some references which may themselves be contentious:

https://theconversation.com/chronic-lym ... ist-129288
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I am the former chair of the tick-borne diseases working group at the U.S. Department of Health and Human Services and a medical researcher who has studied chronic Lyme disease for 20 years. It has become obvious to me that the problem is deeper and more complex than the polarized debate over the controversy would make one believe.

My colleagues and I have closely followed the health of Lyme disease patients as they recover, and what we have discovered runs counter to the mainstream teaching about Lyme disease. Doctors still often don’t know how to accurately diagnose patients with Lyme disease, and patients don’t always get better, even when they are diagnosed and treated. Physicians lack the diagnostic tools for early diagnosis or for documenting cure of the disease.

Studying this subgroup of post-treatment Lyme disease patients who are treated for Lyme disease but don’t get better is a clue on my way to find to understand chronic Lyme disease. While it may not provide definitive answers yet, we hope it will add to the body of knowledge about this perplexing set of conditions that are likely diverse in origin.

The chronic Lyme controversy ...
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https://www.health.harvard.edu/blog/lym ... 8061814071
"The main controversies surrounding Lyme disease

The blood test the CDC recommends to diagnose Lyme checks for an immune response to the bacteria, not for the Borrelia itself. That’s why the test can be negative if the disease is present for less than a month. It takes at least a couple of weeks to mount an immune response that would turn the test positive. It is easier to diagnose Lyme if you have the classic bull’s-eye rash that shows up a few days after the tick bite. In these cases, testing is not even necessary. But the rash only shows up in 80% of cases.

If making a diagnosis can be complex, the controversy about the treatment is so intense that some have even coined the dispute “Lyme wars.” The clash emerged from doctors’ offices, and spread to public hearings in statehouses around the country. One of the main points of contention is the duration of antibiotic treatment — not only for acute Lyme but also for PTLD. The evidence to recommend a specific length of antibiotics treatment is scarce. Most physicians follow the two- to-four-week treatment the CDC recommends. Some studies funded by the National Institutes of Health did not show any benefit when patients used several months of antibiotics. However, there is anecdotal evidence from a few patients who improved after months of antibiotic treatment. The naysayers believe this is probably due to a placebo effect.
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https://www.pharmaceutical-technology.c ... g-on-here/
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Fake diagnosis, not fake disease

One thing everyone can agree upon is that these patients are truly unwell. The fact that they have chronic disabling symptoms is not up for debate, regardless of whether their diagnosis of chronic Lyme disease is accurate, and approaching them with compassion and care is paramount.

Gorski says: “Calling something a fake disease in essence dismisses the symptoms. Calling something a fake diagnosis I think acknowledges that people are experiencing symptoms, that there appears to be something wrong, while at the same time saying that the label that has been put on that constellation of that symptoms is not based in science.”

It’s also worth noting that the medical establishment has been wrong many times before, and will be again. Doctors used to believe peptic ulcers couldn’t be caused by bacteria, Ehlers-Danlos syndromes were very rare diseases and smoking was harmless. Perhaps the chronic Lyme sceptics will all be proven irrefutably wrong one day, and this particular tick-borne bacteria is responsible for debilitating chronic illness on a gigantic scale. Or maybe it’s a misdiagnosis of a constellation of conditions with similar symptoms, like chronic fatigue or fibromyalgia. What is vital is that patients are taken seriously when presenting with complex symptoms, and not dismissed by their doctors and sent to hunt for answers elsewhere.
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477530/
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... Perhaps the most recognized and contentious facet of this debate is whether it is effective, appropriate, or even acceptable to treat patients with protracted antibiotic courses based on a clinical diagnosis of CLD.

The dialogue over CLD provokes strong feelings, and has been more acrimonious than any other aspect of Lyme disease. Many patients who have been diagnosed with CLD have experienced great personal suffering; this is true regardless of whether B burgdorferi infection is responsible for their experience. On top of this, many patients with a CLD diagnosis share the perception that the medical community has failed to effectively explain or treat their illnesses. In support of this patient base is a community of physicians and alternative treatment providers as well as a politically active advocacy community. This community promotes legislation that has attempted to shield CLD specialists from medical board discipline and medicolegal liability for unorthodox practices, to mandate insurance coverage of extended parenteral antibiotics, and most visibly to challenge legally a Lyme disease practice guideline. The advocacy community commonly argues that Lyme disease is grossly underdiagnosed and is responsible for an enormous breadth of illness; they also argue that the general scientific and public health establishments ignore or even cover up evidence to this effect. A large body of information about CLD has emerged on the Internet and other media, mostly in the forms of patient testimonials and promotional materials by CLD providers. For a medical consumer and for the physician unfamiliar with this subject, this volume of information can be confusing and difficult to navigate.

The CLD controversy does not, however, straddle a simple divide between 2 opposed scientific factions. Within the scientific community, the concept of CLD has for the most part been rejected. Clinical practice guidelines from numerous North American and European medical societies discourage the diagnosis of CLD and recommend against treating patients with prolonged or repeated antibiotic courses.1–21 Neither national nor state public health bodies depart from these recommendations. Within the medical community, only a small minority of physicians have accepted this diagnosis: 1 study found that only 6 of 285 (2.1%) randomly surveyed primary care physicians in Connecticut, among the most highly endemic regions for Lyme disease, diagnosed patients with CLD and still fewer were willing to prescribe long courses of antibiotics.22,23
Go to:
THE CONFUSING TERMINOLOGY OF CHRONIC LYME DISEASE

The mere name “chronic Lyme disease” is in itself a source of confusion. ...
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An impressive bunch of people
https://www.hhs.gov/ash/advisory-commit ... index.html

I notice a number of MDs on the board?

At this point you know more than I do about the board since I've not previously looked it up.

I enjoy colorful profanity!

(and “asshat” is a great and only slightly cloaked way of saying “*sshol$” and just as harsh sounding)

Might there be a PG way to explain “arrogant knob”?

And even that 80% is not always a slam dunk, for example:

https://www.nice.org.uk/guidance/ng95/r ... 4792273597

For example, look at the 3rd one which they describe as a “faint” bull’s eye. Yeah, it’s there, but it’s not classic.

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CONCLUSION: Many diagnoses of Lyme disease will be made late. And we need a medical system which is effective at diagnosing — and treating — the condition faced by each of these people, too.