FAQ | Notrecovereduk

LONG COVID FAQ

Long COVID is an often debilitating illness that occurs in at least 10% of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections. More than 200 symptoms have been identified with impacts on multiple organ systems. At least 65 million individuals worldwide are estimated to have long COVID, with cases increasing daily. Biomedical research has made substantial progress in identifying various pathophysiological changes and risk factors and in characterizing the illness; further, similarities with other viral-onset illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome and postural orthostatic tachycardia syndrome have laid the groundwork for research in the field.

The main disease hypotheses for the root causes of long COVID include viral persistence (infectious virus, viral RNA, or viral proteins), autoimmunity triggered by the infection, reactivation of latent viruses, and inflammation-triggered chronic changes leading to tissue dysfunction and damage.

What symptoms can Long Covid cause?

The disease burden spans from mild symptoms to profound disability, the scale making this a huge, new health-care challenge. The evolving symptom list is extensive, multi-organ, multisystem and relapsing–remitting, including fatigue, breathlessness, neurocognitive effects and dysautonomia.

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What are the treatments for Long Covid?

As of March 2024 there are no approved treatments for Long Covid. While there may be medications or lifestyle adjustments that may help provide temporary symptom relief for some patients, this is not the same as a treatment that can significantly improve quality of life and functionality on a consistent basis and should not be considered 'Long Covid treatments' in the same way they would not be considered as treatments for other serious chronic health issues.

There are many false and damaging claims that Long Covid can be treated with exercise. For Long Covid patients who meet the criteria for ME/CFS and have post exertional malaise as a symptom (PEM), exercise can be extremely harmful and can lower their baseline permanently. Many Long Covid patients were former athletes who understand the benefits of exercise and this is typically one of the first things that a patient tries. Please visit the Testimonials page to read anecdotes of patients who are unable to exercise and to read newspaper articles on why Long Covid is an illness that can't be treated with it.

There are also many 'brain training' courses' that claim to be able to treat Long Covid and false recovery stories from these methods. There are over 10,000 scientific peer reviewed medical papers showing the abnormalities found in these patients (please take a look at our Research page for highlights) and no amount of positive thinking is able to repair organ damage, mitochondrial dysfunction, endothelial damage, microclots etc. If there are claims that a brain training course has 'treated' Long Covid then it is likely the patient was simply recovering naturally from their Covid infection and suffered common post viral fatigue. Similar to claims that green tea, cold showers and walks in nature have 'treated' Long Covid, patients tend to attribute their lifestyle changes to their recovery when there's no evidence any of this has real beneficial impact.

Are governments funding research towards Long Covid treatments?

Despite the increasing need for research and treatments, the government has thus far spent £50 mn on LC research, which translates to £26 per patient over a three year period, or £6.58 per patient per year. Almost none of this has gone into biomedical research that will understand and treat the disease. Millions of pounds worth of research has been wasted on lifestyle intervention studies such as the £1M Glasgow University study in 2021 to research if diet improvements could treat the condition and as of March 2024 is still yet to publish the data. All-Party Parliamentary Group on coronavirus called for £100mn a year in funding a year,, which would translate to £52.63 per patient per year.

Considering the massive burden of Long Covid on the economy (long term sickness figures are higher than ever before, for which Long Covid and ME/CFS patients must surely make up a significant proportion) and the suffering for some patients being so bad they are facing no choice but to take their own lives it is essential the government urgently invests a significant amount of funding in discovering biomarkers and treatments for patients.