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The ‘wild west’ of long Covid: The expensive, bizarre and ‘dangerous’ treatments on offer to patients

Exclusive: Potentially dangerous clot-busting drugs and probiotic stomach implants are being recommended to patients desperate for help

Samuel Lovett
Senior News Correspondent
Tuesday 12 July 2022 17:26 BST
Comments
Private practitioners are offering a wide range of unproven therapies to desperate patients
Private practitioners are offering a wide range of unproven therapies to desperate patients (PA Archive)

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People with long Covid are being offered unproven, bizarre and, in some instances, “dangerous” treatments by private clinics, often at a cost of hundreds of pounds — as officials warn that the industry is at risk of turning into the “wild west” without proper regulation.

The Independent has uncovered a wide range of therapies being touted to “desperate” patients, few of which have been approved for use in the NHS — or rigorously tested — for alleviating persistent coronavirus symptoms.

These include probiotic implants inserted into the stomach, clot-busting drugs which carry the risk of heavy bleeding and haemorrhaging, IV infusions, and “bioresonance” — a holistic therapy that claims to remove lingering viral matter from the body via electromagnetic waves.

Such treatments are offered after expensive consultations with private practitioners. Patients are typically being charged between £200 and £600 for these sessions.

The NHS has warned that “misinformation around cures or quick fixes for long Covid is putting people at risk”, while the Advertising Standards Authority (ASA) said it was aware of a rise in clinics claiming to treat the condition without providing evidence.

Labour’s Andrew Gwynne, a shadow minister for public health, called upon ministers to implement a “proper system” that provides “accessible, timely and evidence-based care”. He urged ministers to take action against a “wild west industry” that “prices people out of care and preys on people living with Long Covid.”

Scientists believe some private clinics are exploiting patients’ desperation, and have warned against the dangers of unproven treatments. “Various off-licence drugs are being supplied without any consideration of longer-term risks or interactions with other drugs,” said Dr Elaine Maxwell, a trustee of Long Covid Support.

Prof Ami Banerjee, a consultant cardiologist at University College London, said patients were desperate, frustrated and “willing to try anything, which makes them vulnerable”.

“Anybody who’s saying they’ve got anything that can cure long Covid, or even if they’re robustly saying they can make it better, I would take with a mountain of salt,” he said.

Estimates show there are around 807,000 people in the UK who have been suffering from long Covid for more than a year, while 409,000 report that their ability to undertake day-to-day activities has been “limited a lot”.

Approved therapies are provided by the NHS through its long Covid clinics, but these are heavily over-subscribed and only see around 5,000 patients a month.

Some people with debilitating symptoms have subsequently turned elsewhere. In a national survey conducted last year, 17 per cent of long Covid patients had consulted private practitioners. Dr Maxwell said this figure is likely to have risen since.

The Long Haulers clinic, which was set up in March 2022, offers an array of therapies that have yet to be proven as effective or safe, recommended by overseas doctors.

Among its services, the clinic offers “live blood analysis” at a cost of £175. This claims to measure micro-clots within patients. These clots have been legitimately associated with long Covid.

However, in 2015, the ASA said there was “no scientific evidence to support the efficacy” of the test.

“Depending on the results” of the analysis, anticoagulation triple therapy can be recommended and overseen by a consultant, according to an email sent out to patients by Long Haulers.

As a cardiologist who uses anti-clotting drugs for his patients, Prof Banerjee said he was “worried” to see this being offered. “They’re not without risk,” he said. “They can cause bleeds. At worst, they can cause brain haemorrhages. Without trial evidence, there is a risk.”

In the same email sent out to patients, the Long Haulers clinic also appears to offer probiotic implants as a treatment, which involves implanting live bacteria into the colon using a catheter.

Research suggests the Covid virus can linger in the stomach after an infection, but it remains unknown whether the introduction of live bacteria into the stomach can alleviate a patient’s symptoms. David Strain, a senior clinical lecturer at Exeter University, said this type of treatment was untested and “doesn’t have a clear evidence base”.

It’s a “procedure that’s not completely without complication,” he added. “I’m not suggesting it’s a very risky procedure. [But] there are risks nevertheless.”

Many of the clinic’s treatments, including the probiotic implants, appear to be provided via outsourced centres. When asked for details on the delivery of these therapies, Long Haulers declined to provide further information.

The clinic asks patients to provide copies of all recent blood tests, scans and consultant letters, and undergo a series of expensive tests and consultation sessions. In total, patients could be charged up to £840 before even starting their treatment.

Long Haulers was set up by Ria Heslop, who has no medical qualifications and is the founder of “No More Silence”, which was reprimanded in February 2022 by the ASA for wrongly implying that the Pfizer vaccine was unsafe and creating “undue fear and distress”.

The clinic’s team of practitioners, many of whom are based in the US, is led by Dr Pierre Kory, an American physician who has erroneously advocated for the use of ivermectin in Covid patients, and described the global response to the pandemic as “mad”.

Long Haulers said the allegations made against it were either outdated or untrue. When pressed to specify, the company did not respond. It initially closed its website after being approached by The Independent, but now claims “we will be back very soon”.

Other clinics and private practitioners are also offering patients treatments and therapies that have not been proven to be effective against the illness – frequently at considerable expense.

One alternative therapy clinic based in London charges patients £135 for a long Covid consultation.

The clinic told an undercover Independent reporter that it can “restore the [body’s] cellular energy” through vitamin supplements, and advocated the use of bioresonance, describing the therapy, which involves sending electromagnetic waves through the body via a machine, as a “cross between biology, quantum physics and medicine”.

Through a combination of approaches, patients can expect to recover within a “couple of months”, the clinic said.

The clinic said that treatment for long Covid represents only a “tiny part” of its practice, which “is mainly focused on providing patients with well-established alternative treatments for auto-immune issues and related conditions”. It added that since the effects of long Covid are new to the medical community, “it is hardly surprising that there are few if any ‘proven’ remedies”.

The ASA has previously warned about false claims regarding bioresonance treatments. Last year, the agency said that a company selling a ”resonator” online had wrongfully claimed its device was capable of destroying the Covid virus.

Despite this, the company which promoted “The Resonator” continues to stand by its claim that daily use of the machine will free the body of any lingering viral matter and alleviate symptoms in “a week or two”. It wrongly claimed its machine was even a “good alternative for a vaccine”.

IV infusions have also been openly promoted by private practitioners, despite there being no data to support their use for patients. The ASA has told companies “they must not make direct or indirect claims that IV drips can help to prevent or treat Covid-19”.

Other clinics elsewhere in the UK are charging patients anywhere between £200 and £600 for consultation sessions, just to determine what type of treatment they should receive.

Layla Moran MP, chair of the All-Party Parliamentary Group on Coronavirus, called for “an urgent investigation” into the regulation of the industry.

She added: “It is deeply concerning that unregulated and untested treatments are being marketed as treatments for long Covid in the UK and this story should serve as a wake-up call for the government.”

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