First test for long Covid gets EU approval, August 2022 - IncellDx incellKINE Long COVID test

(A portion of?) your quote is included in the extracts section on the ME Assoc page. I presume it's reproduced in the same order as in The Times —

It does seem to also include a comment on drugs, but I don't know if there's anything in the Times article that that would relate to. I can't read it either but the summary implies it's just about the IncelDx test.

Some experts are sceptical, though. Jonathan Edwards, a professor at UCL and expert in autoimmune diseases, says: “The immediate problem with these profiles is that they are generated by machine learning, which maximises the chances of throwing up something unreproducible and irrelevant. It is also worth noting that in mainstream medicine, dealing with long-term inflammatory and autoimmune disease tests on cytokines like this have been essentially useless.”

“I am pretty certain there is no reliable evidence for efficacy [for these drugs in this context],” Edwards says. “We used to try things out ad hoc 40 years ago but we know enough now to know that we shouldn’t. Drugs are toxic. Unless you’ve tested in a controlled, double-blind setting, you don’t begin to treat people.”

However, he adds that “one can never dismiss anything totally since very unexpected beneficial effects have historically been confirmed — for example, chloroquine for rheumatoid arthritis.”
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Thanks to Robert I note that the Times piece includes:
I am told my immune profile is exactly that of the “pure” long Covid group, with the three elevated cytokines they would expect. I’m surprised to hear this since I’ve been feeling much better for quite some time.

Well that was a surprise that the test was bang on.
Hopefully the irony of the next bit is not lost on all readers.

As Karl Popper said, it is always hard to prove a theory right but it is often quite easy to show that it is completely useless.
 
Dolphin said:
(Paywall)
I tried the new test for long Covid

Francesca Steele suffered fatigue and flu symptoms for a year after she had coronavirus. Now she’s taken a new private blood test, what would her diagnosis be?
https://www.thetimes.co.uk/article/...elldx-blood-treatment-symptoms-2023-hjz3rgdq0

Discussed more here:First test for long Covid gets EU approval, August 2022 - IncellDx incellKINE Long COVID test
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She had that previous article on the Lightning Process, that she mentions in this new article:

In the UK, 2.1 million people are estimated to have long Covid, according to the Office for National Statistics. Nearly a third of those have had symptoms for two years or more. I first had Covid in 2020, then had serious long Covid for more than a year, during which time I remained housebound for several months. I have mostly returned to the way I was before getting ill (the only treatment that really moved the needle for me was mind-body work, which aims to reduce the body’s stress response and which I’ve written about in this newspaper), although I do still have occasional symptoms. IncellDx assures me that the test may still detect something in my system.
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Jo Edward's raising some concerns:

Patterson says that about 70 per cent of people who take the test are judged to have this “pure” form of long Covid, of which 85 per cent respond well to the typical treatment regimen (six to twelve weeks) recommended by IncellDx. Eventually the spike protein “goes away”.

Some experts are sceptical, though. Jonathan Edwards, a professor at UCL and expert in autoimmune diseases, says: “The immediate problem with these profiles is that they are generated by machine learning, which maximises the chances of throwing up something unreproducible and irrelevant. It is also worth noting that in mainstream medicine, dealing with long-term inflammatory and autoimmune disease tests on cytokines like this have been essentially useless.”

Brett Lidbury, an associate professor at the National Centre for Epidemiology and Public Health in Australia, who has also previously researched biomarkers for ME/CFS, believes that the fundamental research is fine, but, he says, “I don’t think it is ready to be released commercially. If they can report successful results from thousands of patients, including volunteers from several countries, then this is an exciting development.”

Ten thousand patients have been tested, according to IncellDx, but only 933 of them in trials. The company says a large-scale clinical trial is forthcoming, dependent on funding.

Questions about the treatment persist too. The drugs, including steroids and statins (prednisolone and atorvastatin, typically) and maraviroc (a drug traditionally used to treat HIV), are being used “off-label”, ie not for the purposes for which they have been approved for use by the National Institute for Health and Care Excellence. As a result, GPs might not prescribe them, although IncellDx works with several private doctors who will.

“I am pretty certain there is no reliable evidence for efficacy [for these drugs in this context],” Edwards says. “We used to try things out ad hoc 40 years ago but we know enough now to know that we shouldn’t. Drugs are toxic. Unless you’ve tested in a controlled, double-blind setting, you don’t begin to treat people.”
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However, he adds that “one can never dismiss anything totally since very unexpected beneficial effects have historically been confirmed — for example, chloroquine for rheumatoid arthritis.”

Having feared that I’d never recover from long Covid, I can understand why those suffering from it might be willing to risk side-effects for the possibility of any improvement. And long Covid forums in the US, where IncellDx has been operating for a couple of years, are full of people discussing it. Some are doubtful about the medication, particularly the anti-parasitic drug ivermectin, citing nasty side-effects including muscle pain and breathlessness. (IncellDx tells me it now doesn’t recommend it.)
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She gets a 'positive' result but remains sceptical:
When I finally discuss my test results with Ram Yogendra, a senior doctor at the Chronic Covid Treatment Center, the clinical arm of IncellDx, I am told my immune profile is exactly that of the “pure” long Covid group, with the three elevated cytokines they would expect. I’m surprised to hear this since I’ve been feeling much better for quite some time. Given how far I’ve already come in recovery, Yogendra suggests that I might wish to try a light dose of the statin atorvastatin and the steroid prednisolone (no maraviroc) for a short period to see if they get rid of those occasional symptoms.

Yogendra has a good bedside manner. Still, I decide not to pursue any further medical treatment — I wouldn’t want to risk common side-effects such as muscle and stomach pain, having got rid of those very symptoms. Would I have tried it earlier in my long Covid journey? Almost certainly, but your appetite for risk changes as symptoms improve, and to me this does still seem risky and unproved.

Still, the hope is that clinical trials do soon demonstrate some underlying cause, and that the millions of long Covid sufferers around the world finally have a diagnostic tool and treatment that they can rely on.
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It looks like this test might now be available to the public:

"Our partnership with IncellDx, a leader in cellular diagnostics has led to the launch of the IncellKINE test, a cutting-edge chronic inflammation test capable of determining Long-COVID, Lyme Disease or ME-CFS, now available in the UK. The IncellKINE test offers an innovative approach to detect and understand long-term immune responses post COVID-19 infection, empowering with knowledge and peace of mind."

Peplobio
 
forestglip said:
It looks like this test might now be available to the public:

"Our partnership with IncellDx, a leader in cellular diagnostics has led to the launch of the IncellKINE test, a cutting-edge chronic inflammation test capable of determining Long-COVID, Lyme Disease or ME-CFS, now available in the UK. The IncellKINE test offers an innovative approach to detect and understand long-term immune responses post COVID-19 infection, empowering with knowledge and peace of mind."

Peplobio
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Have there been any geniune clinical trials of this test?
 
What does “capable of determining” Long Covid Lyme Disease or ME/CFS actually mean here. The stuff in the link only mentions Long Covid

It isn’t actually saying in black & white that it can distinguish
 
Yann04 said:
Have there been any geniune clinical trials of this test?
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Here are the references from that test page:

[1] Patterson BK, et al. CCR5 Inhibition in CriticalCOVID-19 Patients Decreases Inflammatory Cytokines, Increases CDS T- Cells, and DecreasesSARS-CoV2 RNA in Plasma by Day 14. IntiJ Infect Dis 2020 doi: 10.1016/j.ijid.2020.10.101

[2] Patterson Bruce K., Guevara-Coto Jose, Yogendra Ram, Francisco Edgar B., Long Emily, Pise Amruta, Rodrigues Hallison, Parikh Purvi, MoraJavier, Mora-Rodríguez Rodrigo A.Immune-Based Prediction of COVID-19 Severity and Chronicity Decoded Using Machine Learning Frontiersin Immunology, 12, 2021;2520

[3] Patterson BK, et al. CCR5 Inhibition in Critical COVID-19 Patients Decreases Inflammatory Cytokines, Increases CDS T- Cells, and DecreasesSARS-CoV2 RNA in Plasma by Day 14. Inti J Infect Dis 2020 doi: 10.1016/j.ijid.2020.10.101

[4] Patterson BK, et al. Immune-Based Prediction of COVID-19 Severity and Chronicity Decoded Using Machine Learning. BioRxiv 2020 doi:https://doi.org/10.1101/2020.12.16.4231 22
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Thread on the last reference:

Immune-Based Prediction of COVID-19 Severity and Chronicity Decoded Using Machine Learning

Weird that they just have two references and make it seem like four. One is just plain duplicated, the other they cited both the preprint version and the final version of the same paper.
 
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The IncellKINE test offers an innovative approach to detect and understand long-term immune responses post COVID-19 infection
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Even if that were true, or meant anything...

empowering with knowledge and peace of mind.
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...empowering how?

And what knowledge? No one seems to understand long Covid any more than we do ME/CFS.

What peace of mind? There's no treatment, and if you've got it, there's a pretty good chance you already know you do. In big, flashing, way-too-bright capital letters.
 
TiredSam said:
Why don't they just write "For novelty purposes only".
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:laugh:

Like the apparatus to measure what percentage of ginger people have in their hair?

That was once a thing. Okay, so it was my auntie's neighbour sat in a kiosk at the village fête trying not to look like she worked on the cheese counter at British Home Stores, but she raised quite a bit for the Biafra famine.
 
This turned up in my Twitter newsfeed:

For anyone planning on purchasing an @IncellDx
test in the UK - I have been waiting 3 weeks for results to be told today (after numerous unanswered emails and promises of results) by @PeploBio that they are unable to process my test and I have to try and request a refund from incelldx. I also paid for a private phlebotomist to come out and take my blood which was excruciating as I’m so ill. So I’m out of pocket for the test & blood draw. Something I can’t particularly afford but I am desperate for answers as my health is getting worse.

Disgraceful and I’m so fed up! #LongCovid #MECFS #PostVac

https://twitter.com/user/status/1810645771768746419
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I came across this Chronic COVID treatment center run by Dr. Bruce Patterson. A Canadian women paid $2000 for a "Covid Long Hauler Panel" and had a "COVID 19 S1 Protein Immune Subset Panel" done from this treatment center and posted her results on X. She was prescribed Maraviroc
LINK
 
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