Genesis and dissemination of a controversial disease: chronic Lyme, 2020, Gocko et al

Paywall, https://www.sciencedirect.com/science/article/abs/pii/S0399077X20307265
Sci hub, https://sci-hub.se/10.1016/j.medmal.2020.09.026

 

What sort of "fact" is it to "have a functional somatic syndrome"? Is the word "fact" being given its normal usage? It may be a "fact" that some people would attribute that diagnosis to those patients.

 

First sentence into the narrative: "The existence of a chronic form of Lyme disease is a source of worldwide controversy."

No, it is not, nor has it ever been - at least for clinicians and researchers and patients with a bit more than a simple, superficial relationship with the disease.

 

If they are insinuating patients on the internet created the concept of chronic Lyme, they need to do some more homework. IDSA and NIH papers are laden with chronic Lyme references well back into the early and mid-'80's. There are a ton of case studies, the most famous (infamous?) of which may be that of Vicky Logan. Documented cases of chronic Lyme, ie, CDC-compliant Bb that does not resolve on its own, or with the use of recommended treatment protocols, are out there in reputable journals. It was only recently the NIH changed the title of 15-year ongong study from Chronic Lyme to PTLDS, which included only patients that presented at the time of enrollment with 2-Tier positive serology.

Chronic Lyme as a "controversy" began to really take shape circa 1990 with the push for a vaccine, and metastasized after the 1994 Dearborn, Michigan testing standardization committee convened and re-worked diagnostic parameters. These were, for many, seen as political maneuvers with design. But as an entity, chronic Lyme was not controversial. It had been well-established, and remains so, as a medical reality.

 

I'm not sure how good an idea it is to talk about the "wandering and wavering" of patients". A bit of alliteration always scores highly for artistic effect, but it runs the risk of revealing too much about the authors view. Style over substance.

 

So I guess this peer review thing is over, then? Why even bother anymore? Courts of law have higher standards of evidence than this.

In my household, we respect the linear passage of time and the fact that events that follow something cannot explain the things that precede it. This is exactly like the arguments for an illness fad where people adopt the ME/CFS label, even though the vast majority of us had never heard the concept before we got sick, in some cases until years after.

What's amazing is that you could replace a few words and this would fit exactly with Long Covid, the only difference is that the infectious origin is not clearly disputed but all the other features are identical. Obviously, as they are the exact same arguments that their psychosomatic predecessors were asserting a full century ago and every day in-between.

Ah, yes, the most alarming information available is definitely a disease that is mocked and discriminated. What kind of nonsense is this?

 

From post #1 in this thread :

So, the authors would approve of all medical information being wiped from the web, so that it could be put under the control of doctors? They don't like it when patients know as much as or more than them about the patient's own health problems?

 

When I introduce to a doctor something I got off the web - which is A LOT - I try to note its pedigree. I point out its true source, e.g, researcher and publication, whether NIH-sponsored or otherwise. I have far too many clinicians AND researchers who are clueless to backstories they should acquaint themselves with if they want to practice whatever in the Lyme arena.

I learned early on if I simply said I read it on the Internet, that would kill my credibility. So, I learned the proper origins of the contested positions. I began to discriminate. In the process, I learned most clinicians in Lyme endemic areas (some, like mine, arguably epidemic) don't know much about the disease. They only know what the CDC tells them, or what a given specialist tells them. They are content not to work that onion.

The patient is forced to fend for herself, education-wise, and sadly, often more. It is the patient who has to discern between propaganda, inference, and fact. That can leave you bereft of confidence in a discipline we were taught was almost above reproach.

It only deepens the despair that too many doctors do, in fact, resent patient empowerment and the democratization of information. Medicine is feudal, and trying to pull it into the 21st century is painful to many who practice it.

I have enough flotsam to spill into multiple medical disciplines. But when peddlers of psych BS come trying to steal into an area that they cannot even adequately discuss from an historical perspective...

 

the paywall bit makes me question who wants to waste their money on trashy ill thought out and obviously poorly researched opinion pieces .

 

I bet this is pretty much the same level of consternation that the priestly class felt not long after the printing press was invented in the middle of the 15th century.

 

The bad news is the paper, the good news is most doctors and journalists don't read the scholarly literature and are never going to read this.

 

Heavens what a piece of wooo hooo.

I was diagnosed with chronic Lyme in 2005 along with a few other tick borne infections. Since then I have, after an initial decline due to what is oft called the herxheimer reaction, I have recovered enough to start working 1 day per week in 2006, retrain from a chemical engineer (abet v slowly) to a psychologist, start riding a bicycle in 2015, completed a charity coast to coast bike ride in 2016, start pt professional work in the NHS in 2016, and now I work FT And I'm well enough to wild swim and climb big hills. Basically I'm 90-95% good as long as I remain on antimicrobial medication.

What contributed to my suffering and isolation was a disregard for my health or interest by medical professionals in my recovery of it, lack of NHS doctors knowledge, skill or interest and the financial strain of keeping buying medicines privately, whilst living hand to mouth, until the NHS finally got on board in 2012.

The frustration, debility and anger this patient blaming cr*p causes can be quite intense. It is after all a diversion away from lack of medical insight, interest, care and knowledge. Contrasted with the patients drive, even when incredibly debilitated, to seek answers, knowledge and treatment. I know which group appears to be the most psychologically 'normal' (if there is such a thing )

Joan
Counselling Psychologist
Member of ILADS
Patient

 

Dr Pierre Tattevin is the president of the French Society of Infectious Pathology (SPILF), which scientific journalists in France generally side with. For example, last year, Dr Tattevin was invited to talk at a panel run by a popular YouTube channel that promotes critical thinking and scientific skepticism.

SPILF have historically had a tough stance against chronic Lyme, and people with PTLDS have heavily criticized them for it. Notably, when the French High Authority of Health (HAS) published guidelines for the diagnosis & treatment of chronic Lyme in 2018-19 (?), SPILF refused to endorse them and released their own different recommendations shortly afterwards. Most French doctors seem to apply the latter now.

Whether there is a chronic infection or not, it's sad for PTLDS patients and science that none of the French scientific skeptics criticize the thinking that it must be a functional somatic syndrome because the underlying biological cause(s) has (have) not been identified yet. The BPS model is widely popular in French medicine especially for chronic pain and fibromyalgia, and I admit it really weirds me out that "no fake med" doctors/EBM supporters buy it (because its scientific basis is nil). I suppose they're simply not very interested in looking into illnesses considered as FSS or MUS. But instead of going down the easy, unscientific posture of psychosomatic symptoms, they should simply state things as they are: the pathophysiology of PTLDS is not understood at the biomolecular level.

On the other hand, SPILF play an important role in calling out and pushing back against notorious Lyme quacks who harm patients through dubious treatments. First and foremost Dr Christian Perronne and his network of Lyme quack doctors dubbed Chronimed. Among other things, these people prescribe long-term antibiotics courses, or artemisia, or hydroxychloroquine w/ azithromiticin for autistic children.

Eventually, as is the case elsewhere in the world, PTLDS patients in France end up without recognition and medical care most of the time. It's completely understandable that they then fall for promises of better health from these quacks, but they shouldn't be the ones to be blamed. The president of SPILF certainly shouldn't partake in doing so by publishing a paper like this one.