Francesca steel 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?
The Times
Gerry Gajadharsingh writes:
“The Office for National Statistics says that in the UK, 2.1 million people are estimated to have long Covid, nearly a third of those have had symptoms for two years or more.
A company based in the USA has developed a blood test looking at levels of 14 immune system proteins called cytokines that the company says indicate blood vessel inflammation specific to long Covid.
Those 14 markers were identified using mathematical modelling and artificial intelligence.
Anecdotally, some clinicians are picking up elevated levels of D Dimer in long covid patients, which may also fit in with this pattern.
However, other researchers are not confirming these findings, in particular in relation to inflammatory cytokines, so the debate is still open.
https://www.thehealthequation.co.uk/inflammation-and-immunity-troubles-top-long-covid-suspect-list/
Questions about their suggested treatment protocols persist too (the treatment regime lasts 6 to 12 weeks). The drugs, including steroids and statins (prednisolone and atorvastatin, typically) and maraviroc (a drug traditionally used to treat HIV), are being used “off-label”, i.e., not for the purposes for which they have been approved for use by the National Institute for Health and Care Excellence.
The logistics and for the blood test and the wait time for the results, in the UK seems to be challenging and until there is more evidence to show how relevant the findings are it probably won’t become mainstream yet!
However, as per my previous blogs, inflammation underlies most disease processes and so I would be surprised if inflammation isn’t part of what’s actually going on with long covid patients. But again, there is probably a degree of multifactorial aetiology (causation) going on in Long covid patients, as with many other health conditions. Remember, it is unusual to have just the one thing causing our health problems.”
I am in a basement clinic on Wimpole Street, London, surrounded by adverts for anti-ageing solutions. The man sitting next to me, wearing a well-cut suit and tapping out emails, is on what looks like one of those outrageously expensive vitamin drips. I see there is something available called rectal and vaginal ozone therapy. It’s not exactly what I expected from cutting-edge science.
However, that is exactly what the US-based diagnostics company IncellDx argues that it is engaged in, having created what it claims is the first definitive test for long Covid. Apparently, this simple blood test, which was recently approved by European regulatory bodies and has been launched on the Continent, uses artificial intelligence to measure inflammatory markers in the blood — small proteins called cytokines and chemokines — patterns of which may be specific to the illness. The test, the company claims, provides greater than 90 per cent accuracy, and can even, it says (although details of this remain vague), differentiate between long Covid and similar conditions such as ME/CFS (sometimes called chronic fatigue syndrome) and Lyme disease.
The results from the test enable IncellDx doctors to suggest treatment protocols designed specifically for those suffering from what it calls “pure” long Covid. In other words, the type of long Covid that exists purely as a result of coronavirus and not the reactivation of something else, such as the Epstein-Barr herpes virus.
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, although I do still have occasional symptoms. IncellDx assures me that the test may still detect something in my system.
There are teething problems, though. Patients in Britain can take the test by having their blood samples sent to Spanish labs for analysis. In my case it takes nearly a month for results to come back. To get them I also have to navigate a homepage in Spanish and fill out numerous documents several times. If I were still very ill, I’d find the delays and administrative hassles extremely frustrating. Many long Covid sufferers struggle with brain fog and other symptoms that make navigating complex systems like this challenging, if not impossible.
While I wait for my results I speak to the virologist Dr Bruce Patterson, who is the founder of IncellDx and has a prestigious medical pedigree. He is the former director of clinical virology and co-director of the Aids research centre at Stanford in California and made key discoveries in HIV research.
What the company calls “pure” long Covid is, in his view, “vascular inflammation” caused by debris from the “spike protein” of the virus — remember all those images of spiky balls explaining coronavirus? — hanging around in the blood. “Most other treatments are directed at symptoms rather than the underlying pathology,” he says. “We’re looking at the root cause.”
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”, i.e., 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.”
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.)
However, I did speak to several American patients who praised the treatment, including Sally*, 54, a leadership coach from North Carolina, who became bedbound after catching Covid in 2020. Her advised treatment regimen included maraviroc and statins (she was also prescribed ivermectin but came off it due to side-effects). She says that she felt better within weeks, although she found the company’s way of working a bit shambolic. “It did help me. A great deal. I can also say that it was far from perfect.”
It is also expensive. Sally spent about $11,000 (£9,100) in total. In the UK the blood draw costs £40 to £80, depending on the clinic (mine was at IV Boost in London; there are six clinics across England and Scotland), and the test analysis costs £340. The follow-up consultation with one of the IncellDx doctors then costs $249 (£207) — but they make treatment recommendations to your physician rather than prescribing themselves and the whole set-up feels out of step with the British system. It’s unlikely that a GP will approve any of the treatment since it’s all off-label, meaning patients will probably have to pay for separate consultations with a private UK doctor, plus the cost of the meds, which an insurer is unlikely to authorise.
The NHS lost 1 million working days to long Covid last year.
When I finally discuss my test results with Ram Yogendra, a senior doctor at the Chronic Covid Treatment Centre, 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.