Long Covid patients travelling abroad for expensive and unproven treatments, investigation finds
Paul Pettinger’s trip to Cyprus came because he felt the NHS had no treatments to offer him. Paul got Covid in the first wave in 2020. After the initial illness, he was left with extreme tiredness and 10% of the energy he once had, he says. “I have a very small amount of energy and when I use up my energy, I end up with headaches, brain fog and with cognitive issues. It's very hard to think. And also I can't walk very far,” he says. His life then fell apart; lost his job; and he’d become a hermit, he says. “I have been almost housebound for over two years.” he says adding: “I’ve become a burden on family and friends.” When we meet Paul he’s lying on a comfortable chair and is hooked to a tube coming out of one vein, which feeds his blood through a quietly whirring machine. The machine separates components of it into different containers and sends it through heparin (a blood thinner) before being put back into his body via another vein. The treatment takes around three hours - the idea is to remove unwanted proteins. Paul’s getting a type of apheresis and he’s had to fly to Cyprus for it. His clinic is called the Long Covid Center and is located on a busy street on the outskirts of Larnaca on the south of the island.
What is apheresis?
Blood is made up of different components such as red blood cells, plasma, platelets and white blood cells. These have different roles in the body including carrying oxygen, fighting infections and clotting to stop bleeding.
In some illnesses these components don’t function as they should or the blood carries abnormal proteins. In apheresis treatment blood is taken from a vein and passed through a machine that separates the blood into its different parts and can remove unwanted components. It takes between two to four hours.
It is a treatment that is available on the NHS for certain illnesses, such as for abnormally high levels of cholesterol or a rare clotting condition called thrombotic thrombocytopenic purpura.
Professor Beverley Hunt is a blood disorder specialist and medical director of Thrombosis UK, and says there are medical risks.
“You could introduce infection, you could cause metabolic upsets, you might need additional magnesium and calcium,” she says.
A joint investigation between ITV News and the BMJ has found that Paul is one of around 120 people with Long Covid symptoms who have made the pilgrimage to Cyprus for treatment. But thousands more have had the treatment in countries spending life changing sums of money. The Long Covid Center is one of several private clinics offering this treatment - others are in Germany and Switzerland. This is Paul’s seventh session. And, he says, he notices a difference and has confidence in the process. “After each treatment, I experienced a small improvement,” he says. “It is the only treatment out there at the time being and so far it's working.”
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The treatment doesn’t come cheap - the NHS does not pay for this treatment for Long Covid. Paul estimates it will cost him between £10,000 to £12,000. Each cycle is around £1,500 pounds and some people have had more than 20 cycles. That excludes flights and accommodation. Paul’s family is helping him out with the costs. Others we have spoken to have spent all their savings. And some in the UK are crowdfunding to raise the money for treatment. Cyprus’ Long Covid Center was set up by Austrian businessman, Markus Klotz, who became a proponent of the treatment after he had Covid himself in 2020. We met him at his clinic in Cyprus.
Markus said his Long Covid symptoms were so bad he tried a cocktail of drugs - including medicine to treat HIV - and tried a variety of diets to get better. He said doctors told him it was in his head when all his blood tests came back normal. “It's not in your head if you can only go two times a day to the toilet and then on a good day to the lunch table,” he says.
His fate changed when he heard a radio interview with Dr Beate Jaeger, an internal medicine doctor, in Mulheim Germany credited with pioneering a type of apheresis for Long Covid.
Doctors can legally prescribe experimental treatments for patients as long as they tell them that it is indeed experimental.
We have approached Dr Jaeger for around two months to tell us more about her treatments on camera. She’s refused as she’s too busy “saving lives”.
But she did tell this investigation that she has been using a type of apheresis for people with other illnesses, including those with very high cholesterol and heart disease, for around 30 years.
When in March 2020 she heard about people with new Covid infections who were very sick with blood clotting problems, she asked the local intensive care department if she could treat people with Covid there but was refused.
Then in February 2021, she treated the relatives of some of her patients who had Long Covid with apheresis and she says she “cured” them. “They just needed one or two apheresis treatments. Before they were creeping on the ground; they could hardly manage to make it to the toilet; and afterwards they could run a marathon,” she says. Now she has treated thousands of patients, she says.
Dr Jaeger speaks about how one patient’s blurred vision was cured by the treatment. And how children in wheelchairs from the UK come to see her too. Her theory that apheresis “drastically reduces the amount of micro-clots that are found in Long Covid patients” by filtering the blood has gained traction among her supporters. There’s a hypothesis that "microclots" - tiny little deposits not detectable with usual blood tests that you’d have on the NHS - are present in the plasma of people with Long Covid. Scientists in South Africa, led by Professor Resia Pretorius, have found these microclots in a sample of people with Long Covid. A special kind of microscope is needed to spot them, but only certain labs have them. Prof Pretorius is working on a diagnostic that could detect microclots and be rolled out in hospital pathology labs worldwide. A fundraising page has raised $161,000 to support the project. Her theory suggests that these microclots damage blood vessels meaning cells do not get enough oxygen in the tissues to sustain bodily functions. In turn this leads to the brain fog, muscle weakness, fatigue and other symptoms associated with Long Covid. “We believe that microclotting and vascular damage is central in the development and persistence of the symptoms,” Prof Pretorius says, adding that she doesn’t think it’s the only reason for them. But others say the science isn’t robust enough to support these claims. Professor Hunt has been looking at clotting problems in Covid.
“The problem is there's not enough science,” she says. “It’s a hypothesis.”
She says we can't link the presence of finding the clots in the lab to symptoms people are reporting.
“It's really hard to link what they found in the lab is actually causing a set of symptoms. How would the microclots cause fatigue? That's, that's the issue for me,” Prof Hunt says, adding: “They haven't produced any evidence to show that is what's happening.”
Prof Hunt adds that the apheresis may be taking all sorts of other things out of someone's blood that may make them feel better - it wouldn’t just take out microclots.
“If apheresis works fantastic, except I haven't seen enough studies showing clearly it works. And for how long does it work?” she asks.
Robert Ariens, professor of vascular biology at Leeds University, goes further.
“We don't know what causes them; what generates them; which mechanisms cause these microclots and whether they actually then cause the disease,” he says.
He believes the clinics are prematurely providing treatment based on a hypothesis that needs more scientific research.
Scientific publications in journals are typically how doctors find out about treatments so they can scrutinise the evidence.
However, information about successes from Dr Jaeger’s clinic is being given directly to patient groups, Markus Klotz says.
They appear on the Apheresis Association website that publishes testimonials and organises slots for treatment in different clinics and has a linked Facebook group.
One post says: “Over 80% of patients report to keep their gains permanently”.
“This is one of the first illnesses where patients very often know much more than the doctors,” he says. “It’s been patient-led from the beginning.”
But this investigation has seen consent forms from the Long Covid Center in Cyprus before undergoing apheresis, which lawyers and clinicians described as inadequate.
It doesn’t make it clear that these are experimental treatments for Long Covid and the consent form asks patients to sign away their right to sue the clinic if they become injured after having apheresis, which is regarded as a safe procedure.
Dr Laura McWhirter is a neuropsychiatrist working in a Long Covid clinic in Edinburgh and doing research scanning people’s brains and analysing their blood to try to find markers that might explain why people are experiencing symptoms such as brain fog, concentration problems and fatigue.
“These treatments are not without risk and expense as well,” she says. “It might be that there is a group who will benefit from apheresis, but I don't know if we know who that group is.”
“I think people are very frustrated. I think they've had a really difficult time trying to get anyone to really listen to the whole story of their symptoms and then to give them any treatment. So I can understand that people are really desperate,” she adds. Chris Witham, a 45-year-old businessman from Bournemouth, was one of those people. He developed Long Covid symptoms - including extreme fatigue, brain fog, pins and needles - and spent around £7,000 on apheresis treatment (including travel and accommodation costs) last year in Kempten, Germany. “I was just really struggling to exist. The thought of work or engaging playing with the children was not even an option. It was, it was almost like survival mode - just trying to get through each day as best you can,” Chris says. After his GP was unable to help he looked for research online that would explain what he was feeling and what he could potentially do, he says. “The only way to find a way out was to try alternative therapies, medications, and suggestions from the [Long Covid] community,” he says. It was the research from South Africa about microclots that gave him something to hang onto, he says. The idea that the blood flow not being quite right seemed to tally with the symptoms people were reporting. “Long haulers suddenly had a little bit of hope, a little bit of evidence and something they could actually go and do and try to make a difference to their lives,” Chris says. He tried lots of other drugs - including large quantities of aspirin - to try to alleviate his symptoms and thin his blood. He then saw the positive reports and decided to go to Germany. But after several rounds he decided that it wasn’t working.
“I'm a 100% convinced that it didn't work for me. And I'm a 100% convinced that it's not a solution for Long Covid. I did hear some reports while I was there of people who said that it really, really helped them after one or two treatments. However, what you don't hear is how long that lasts,” he says. “It's the long term effects and the long term success stories that aren't as forthcoming as the immediate euphoric sort of wins that people post on their social media walls,” he adds. Despite the treatment's lack of success in him he says he probably would’ve done the same again. “You know, we are all actually contributing to the research in a way, and we are all trying to get to the bottom of this horrendous disease, this horrendous virus, and its various symptoms,” he says. He’s no longer sure that microclots are the whole story.
But clinic’s like Dr Jaeger's and the Long Covid Center also prescribe drugs with the aim of treating microclots. They give two or three anti-clotting drugs and blood thinners together to people who visit them. These help to “prevent further clotting and to promote the breakdown of existing micro-clots” Dr Jaeger’s website says. These drugs aren’t available on the NHS as a treatment for Long Covid. Nor in many other countries, Markus Klotz says. Instead people travel overseas to get their prescription.
“A lot of people fly here every three months just to get their medications. because at home they wouldn't prescribe them,” he says.
We have spoken to people who had been prescribed them who were told to stop taking them by their doctors when they got back home because they were considered too risky.
Paul had been prescribed two of the drugs - aspirin and clopidogrel - at the clinic in Cyprus. He hasn’t been tested for “microclots” but he’s been told that everyone with Long Covid has them.
He says he has bruising from the drug - a known potential side effect - but doesn’t think they’re working for him. “I haven't really felt any effect from the drugs,” he says. But some also question the scientific rationale of giving blood thinners to stop the microclots forming. There is as yet no published and peer reviewed evidence showing that these blood thinners and anti-clotting drugs actually reduce the microclots.
“As we don’t know how they form, we cannot tell if this treatment will stop microclots from recurring,” Prof Ariens says.
Others told us these drugs have serious harms. It’s not just a question if they might not be effective.
“We have this problem of just using a drug, like it's a Smartie,” Prof Hunt says. “It's got some downside to it. These are not drugs you take lightly.”
When medicines are given, doctors consider if the benefits outweigh the harms. For some people - such as those with heart rhythm problems - they can be life saving so the risk may be worth taking. But we don’t have enough evidence to make that judgment with Long Covid, Dr McWhirter says.
“We don't know what the benefit is here. So we can't really weigh it against the risk and they're not at all without risk,” she says. She sees people who have brain injuries after taking blood thinners.
Bluntly put, we don’t know where this balance lies for blood thinners or apheresis without proper studies.
There are many treatments in the history of medicine - including in the pandemic - where promising treatments have turned out not to be effective when put into a clinical trial. Or they’ve turned out to be harmful.
Several experts we spoke to said that the treatments should only be given as part of a clinical trial so the risks can be properly monitored.
Clinical trials are a gold standard test of whether something is effective in medicine.
There may be several reasons why people feel better and symptoms of Long Covid fluctuate naturally over time and it might be pure chance that this happens when they’ve had a treatment or there may be a placebo effect going on, they said.
The Department of Health told us that it strongly advises people to only access new treatments for Long Covid through regulated clinical trials.
But both Markus Klotz and Dr Jaeger say this is all too slow. You can’t sit back and do nothing. You have to act. “I don't care about the criticism,” Dr Jaeger says. “If I see a child in a wheelchair suffering for a year, I prefer to treat and not to wait for 100% evidence.”
She says there is no treatment without a risk and people should not ruin hope for patients. The doctors' regulator in Cyprus told this investigation that it has not received any complaints about Jaeger or her clinic from patients or other organisations but will investigate if it does. Dr Jaeger says she’s trying to do a trial but it costs millions. “If you have been spending months and months in a dark room without noise and sound and without life, you just don't wait. And this is why we started early,” Markus Klotz says.
What is Long Covid?
Long Covid is an informal term that is commonly used to describe signs and symptoms that continue or develop after someone has been infected with Covid. One problem is there’s no simple diagnostic test for it - it’s based on symptoms.
If symptoms last more than four weeks but less than 12 it’s referred to by health authorities as “ongoing symptomatic Covid."
What many people think of as Long Covid (symptoms lasting a long time) is what experts refer to as post-Covid syndrome. This is used to describe symptoms that develop during or after Covid and that continue for more than 12 weeks and are not explained anything else.
Symptoms vary between people and can include fatigue, headaches, chest tightness, “brain fog”.
It’s been linked to more than 200 symptoms and so studying it is quite hard. But it can last for months or years, and has a distressing tendency to reappear, sometimes months after an apparent recovery.
Dr Laura McWhirter says that although it’s tempting to think of it as a single illness and everyone has the same problems, that’s not what they’ve found.
“There are common features, but when you look carefully there are different things going on for different people,” she says.
Indeed people have experienced the Covid infection differently - some have had a mild initial illness where others have ended up in intensive care. Plus people may have risk factors, such as diabetes or obesity, that put them at risk of getting sicker.
Dr McWhirter also says there are drugs to help manage some of the symptoms that people have such as migraine treatments.
Research is underway to try to understand what’s causing Long Covid.
Microclots are just one theory. Others suggest the virus may persist or there’s something that’s happened to the immune system.
The holy grail is finding something in the blood or body (a biomarker) that is detectable with a simple test that can tell someone if they have Long Covid and finding an effective treatment for it.
But some are sceptical. “It's unlikely that there would be a single biomarker,” Dr McWhirter says.
Trials are underway in the UK testing different drugs, such as the STIMULATE-ICP study.
This will test an anti-clotting drug called rivaroxaban to see if it helps with some of the Long Covid symptoms. It will also look at other drugs - such as drugs that have a role in inflammation - to see if they help too.
Only certain places are taking part and people need to be over 18 to enter and have had symptoms for more than four weeks.
The HEAL-COVID trial is aimed at people who have been in hospital with Covid. It aims to see what treatments might prevent people getting Long Covid once they’re discharged.
It is testing another anticlotting drug - called apixaban - and a statin with anti-inflammatory properties.