Guardian piece on"Lyme"

We tried to remain open-minded. We tried a type of talking cure called the MindBody Reconnect which had revitalised a friend. Milly didn’t enjoy the expensive online sessions but doggedly stuck with it. I’m sure it works for some sick people. For Milly, it was a disaster. She became convinced she was responsible for her illness because she could not think herself well.
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I really hate how buying some forms of woo has been reframed as being open-minded. There is nothing open-minded about being sold bullshit. It's fraudulent. Everyone who uses this argument understands how it is total bullshit, because they'd dismiss all rationalizations they don't agree with.

Hot yoga? Open-minded. Astrology? Bunk. The Secret? Open-minded. Convalescence? Bunk. Change people, and you can change how all of this is answered, because mass confusion has been how they failed to deal with it for decades. Medicine has become the biggest purveyor of bullshit about health simply because of its size and reach, in a similar way as an authoritarian government can quickly become the biggest source of violence to its own population, because it carries it through large institutions that have enormous resources and legal cover, and still they whine about how people fall for bullshit they disagree with, while selling bullshit they have been told is, somehow, legitimate.
 
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OrganicChilli said:
It got some attention on Reddit. As always, it's infuriating to read:

Apart from the fact that most GPs think CFS = fatigue, a lot of them read Suzanne O'Sullivan and believe in GET according to this thread. What a waste of tuition fees if this is the result.
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There is a desperate need for a multidisciplinary service for patients like her.
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It’s very clear that this means psychology..
Chronic fatigue support groups are toxic to children, IMO. The author talks of how “pacing” is controversial, but this is largely perpetuated by a group who are sceptical of the importance of physical activity. Without movement, children with CFS decondition and then struggle with things like tachycardia after relatively minor activity. Sometimes this then progresses to a POTs diagnosis as well.
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It’s not like the advice already is to do as much as you can without getting PEM..
As much as I really don't enjoy dealing with things like CFS, the research questions around it fascinate me. I also am of the view that CFS, being so heterogenous, likely represents a broad range of underlying pathophysiological processes that we're yet to fully understand - some of which may be biological, some functional. Unfortunately, if this is the case, it makes research so difficult, and there will be a massive amount of noise in any data.
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If you don’t define it properly it will continue to include a mishmash of different things.. DecodeME showed that it’s possible to properly identify a cohort for research purposes.
Interesting that he says he can’t see a reason why the poor kid would get anything from the sick role, because it sounds like she’s getting a lot of 1:1 attention and parent time and avoidance of school. But the author seems blind to this
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No comment needed.

This is apparently the nuanced take:
Lyme disease exists and is very much a real entity. It is a tick-borne bacterial infection which can cause some serious problems.

“Chronic Lyme disease” on the other hand is different. It is not a chronic effect of infection with b. Burgdorferi. Most probably have never been infected by b. Burgdorferi. (With a good dose of special pleading as to why the standard tests for them don’t work so they’ve had to pay money to a dodgy Mexican or German lab instead)

They have an illness which is not well characterised by existing medical science. Their symptoms are very much real. It must be very frustrating for them that medical science as it stands can’t help them and can’t make them better.

Unfortunately, these people have often been preyed on by quacks who DO promise certainty where none should exist, who DO give a “diagnosis” where we do not currently have one. Who DO offer a “treatment” (which incidentally doesn’t actually make them better, but which they have a hand waving explanation for why it doesn’t work- they’re “herxing” rather than having side effects).

These people are victims of unscrupulous predators- some of whom hide behind a medical degree
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I wonder if they would be able to apply the same kind of scrutiny towards the multidisciplinary, functional, etc. babble?
 
Evergreen said:
Moving away from Milly's particular case, is the test mentioned in the article "T-spot test...German lab" one of the cellular tests about which Baarsma et al. 2022 conclude:

?
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It is probably the test from the German Armin Labs, whose tests are known to overdiagnose people with Lyme (I have a memory from this forum that some very healthy journalist tried the test as an experiment once and it came back positive). A lot of people are told in alt med/Lyme circles that the tests of this lab are better than the standard Lyme test and I believe this particular lab is pretty well-known in Europe for this reason. I'm sure they make a good living out of it...
 
IMO any ire here should be directed at the shambles that characterizes most tick-borne disease diagnostics, Lyme in particular, and the complacency with which medicine at large treats the confusion that arises as a result.

It's not patients being gullible. There is Science enough on both sides, all sides, for patients to have conflicting informed opinions.

The culprit is inertia within the medical community.

ETA: ME/CFS errors not withstanding
 
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Wyva said:
It is probably the test from the German Armin Labs, whose tests are known to overdiagnose people with Lyme (I have a memory from this forum that some very healthy journalist tried the test as an experiment once and it came back positive). A lot of people are told in alt med/Lyme circles that the tests of this lab are better than the standard Lyme test and I believe this particular lab is pretty well-known in Europe for this reason. I'm sure they make a good living out of it...
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Yeah, we hear of people being diagnosed by a German lab where I am too.

Armin offers two tests that mention T cells - iSpot, which was in the Boorsma study cited above, and EliSpot that was not one of the tests included in the Boorsma study cited above. They link each test to a long list of infections. iSpot's list includes covid. They "explain":
The i-Spot test is based on the variability in correlation with the number of activated T-cells and respectively the secreted IFN-γ and IL2.
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I'm no immunologist, but I spot a sentence that doesn't mean anything.
 
Wyva said:
whose tests are known to overdiagnose people with Lyme (I have a memory from this forum that some very healthy journalist tried the test as an experiment once and it came back positive).
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I wonder how this was proven given the existence of asymptomatic Lyme - whose prevalence was lamented by Willy Burgdorfer.

Lyme and ME/CFS share more in common than several symptoms. It's not surprising that civilians can get lost in the double-talk and propaganda; clinicians and academicians do all the time. Researchers, too.

Give me a medical historian every time.
 
duncan said:
Give me a medical historian every time.
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Umm, like Edward Shorter?... I think there's plenty of double-talk, propaganda and self-serving bias to be found among some medical historians too.

My condolences and appreciation to Milly, who seems to have the firmest grasp on what is actually true out of everyone mentioned in that article. And my condolences to her family, who are doing their best in an environment of misinformation, disinterest and opportunism.
 
Hutan said:
Umm, like Edward Shorter?
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And Henrik Vogt :wtf:

Although in his case it's something like a minor, or maybe a hobby. Knowing and knowing better are definitely two very different things. Lots of people understand everything about us better than most despite knowing almost nothing about it, and people who are internationally-recognized experts don't know shit about it, yet always confidently bullshit about it because since the vast majority know nothing about us, they can't tell that it's all hot air.

Not too different from LLMs: they know everything, have most known facts memorized, but understand very little. It's kind of sad how little insight all of this very public technology seems to have yielded, especially how it perfectly mirrors human flaws. For all the people who keep saying that one of the weaknesses of current AI is that it's too different from human intelligence really seem to miss how similar it so often ends up in word salads that sound convincing while saying nothing of value at all.
 
Evergreen said:
Maybe this post by @Dolphin ? Sounds like it was a bunch of journalists, along with others...
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As some of the people reading this thread probably haven’t followed the link, I thought I’d re-post the information here:
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I don't have another link for this that discusses the documentary in English

Documentary: Undercover in German Lyme Clinics (2017)

Short summary:
Several totally healthy danish journalists as well as 4 well known totally healthy danish tv-personalities sent their blood samples to both Arminlabs and BCA Clinic in Augsburg.
They were all found positive for Lyme disease with the Elispot test and treatment was recommended to them.

Same thing for a severely ill danish lady who had been diagnosed with ALS in Denmark:
She went for a second opinion to BCA in Augsburg and was told she had lyme disease and could be cured.

https://forums.phoenixrising.me/threads/documentary-undercover-in-german-lyme-clinics.55493/

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Also, though not directly relevant to Lyme disease, it does speak to infection testing at Arminlabs:
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This is a thread on a paper on the results from Armin labs, which promotes itself a lot for Lyme and tick-borne infections in Europe.

There were similar high rates of diagnosis in both patients and controls

Human enteroviral infection in fibromyalgia: a case-control blinded study, 2022, Armin Schwarzbach et al

https://www.s4me.info/threads/human...ded-study-2022-armin-schwarzbach-et-al.28644/
 
Dolphin said:
As some of the people reading this thread probably haven’t followed the link, I thought I’d re-post the information here:
—-
I don't have another link for this that discusses the documentary in English

Documentary: Undercover in German Lyme Clinics (2017)

Short summary:
Several totally healthy danish journalists as well as 4 well known totally healthy danish tv-personalities sent their blood samples to both Arminlabs and BCA Clinic in Augsburg.
They were all found positive for Lyme disease with the Elispot test and treatment was recommended to them.

Same thing for a severely ill danish lady who had been diagnosed with ALS in Denmark:
She went for a second opinion to BCA in Augsburg and was told she had lyme disease and could be cured.

https://forums.phoenixrising.me/threads/documentary-undercover-in-german-lyme-clinics.55493/

—
Also, though not directly relevant to Lyme disease, it does speak to infection testing at Arminlabs:
—
This is a thread on a paper on the results from Armin labs, which promotes itself a lot for Lyme and tick-borne infections in Europe.

There were similar high rates of diagnosis in both patients and controls

Human enteroviral infection in fibromyalgia: a case-control blinded study, 2022, Armin Schwarzbach et al

https://www.s4me.info/threads/human...ded-study-2022-armin-schwarzbach-et-al.28644/
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It's not clear which German lab was used by the family in the article, could be Armin, but I've also seen patients of Dr Ben Sinclair's clinic (Finlay's), and who Milly/Milly's family are consulting as per the article, discuss sending bloods to Susa Lab (also in Germany) and via a medical logistics company called GLXG. Finlay's seem to collaborate on this with Dr Carsten Nicolaus (GLXG's Chief Medical Advisor) and who oversees the lyme and IV antibiotic service at Finlay's as part of a worldwide lyme doctor mentoring service, although he seems physically reside in London. I also see Dr Nicolaus previously owned/ran the now closed BCA Clinic/Lab in Augsberg to which you refer, so perhaps this just morphed into Susa/GLXG. I also spot their family runs a supplement company (Makewell) for which he is Chief Medical Advisor and that targets the tick-borne infections market. I've seen patients of Dr Sinclair talk about using the Makewell products as part of their lyme protocols, they get some sort of discount coupon (indeed, they look expensive if you end up taking them for a long time and as many lyme protocols suggest), alongside sometimes up to triple antibiotic therapies (azithromycin, rifampicin, minocycline) and/or IV antibiotics, methylene blue, disulferam, etc., and repeat testing.

From that wee dig around, it seems a total nightmare of a field to navigate. On face value there seem plenty of potential red flags, but Sinclair's (self-proclaimed) 60-70% success rate suggests there is promise. I wish they would publish something, perhaps they will.

I agree with what @Hutan says, Milly seems the most clear sighted of them all, '“Because I’ve tried loads of things, it’s hard to believe this will really work,” “I’ve lost faith in medicine and practitioners. I’m not feeling much better either. It’s difficult to think of the future right now – where my life might lead.”

There is literature indicating such co-infections may contribute in some cases of Long Covid and ME. I have my fingers crossed for them, and hope that science starts to more clearly support the clinical practises we are seeing.
 
Troutwish said:
I have my fingers crossed for them, and hope that science starts to more clearly support the clinical practises we are seeing.
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Except that science does not work that way - to support what you like to see!

I think it is useful to have information on all these private labs and physicians because it gives a perspective on the extent of bad practice.
Troutwish said:
Sinclair's (self-proclaimed) 60-70% success rate suggests there is promise. I wish they would publish something, perhaps they will.
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Except that that is exactly what you get from fake medicine. Publications from people who do not do properly controlled studies will be a waste of time anyway.

There is more than 'red flags' here. There is enough to discount it all as bad practice - whatever reality science finally uncovers.
 
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