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Long Covid could actually be four different syndromes, but scientists admit we still don't know.


"Long Covid" could actually be broken down into four different syndromes, scientists claimed today.

Thousands of survivors have reported being plagued with symptoms such as fatigue, shortness of breath, muscle pain, and irregular heartbeat months after the disease broke out.

However, scientists are still baffled by the ongoing effects of the coronavirus being compared to this generation's polio.

Scientists from the National Institute for Health Research – led by Professor Chris Whitty – have been asked to review the limited evidence for Long Covid to help both patients and clinicians understand the "phenomenon".

Their results, released today, warned that even children can suffer, and it cannot be assumed that people at lower risk of serious illness and death from Covid-19 are also lower at risk of permanent side effects.

Doctors warned of some mental health issues like anxiety and depression in "long-haul drivers," as they are called, which, unlike the virus itself, could be due to lockdowns.

The experts also claimed that the symptoms could be divided into four different groups:

  • Post Intensive Syndrome (PICS)
  • Postviral Fatigue Syndrome (PVFS)
  • Permanent Organ Damage (POD)
  • Long-term Covid Syndrome (LTCS)

Long Covid could actually be four different syndromes, but scientists admit we still don't know who is most at risk or how to treat it. Some people suffer from shortness of breath (picture)

Dr. Elaine Maxwell, lead author of the NIHR review, said, “The overwhelming message is that this is not a linear condition.

"The lack of differentiation between these syndromes could explain the challenges people face in believing and having access to services."

The NIHR team, funded primarily by the Department of Health and working with the NHS, did not detail each of the syndromes in the publication.

WHAT ARE THE FOUR TYPES OF LONG COVID?

Post-Intensive Syndrome

Critically ill patients can suffer from a range of health problems after a long hospital stay. This can include muscle weakness from being stationary for so long, which can make basic tasks difficult. They may experience anxiety or other mental health problems due to the trauma of their illness. Typically, post-intensive care syndrome can lead to brain dysfunction, such as: B. inability to remember things that may affect the patient's ability to work again.

Post-viral fatigue syndrome

Many people reported parallels to this syndrome, which can occur, for example, with an infection after enterovirus or rubella. It can include persistent fatigue and "brain fog" that can make it difficult to focus or remember things.

Permanent organ damage

Doctors have persistently said that Covid-19 is not just a respiratory disease, but a multi-system disease that affects all parts of the body. According to the NIHR, organ damage has been observed particularly in the lungs and heart. Liver and pancreas damage has also been noted by scientists.

Long-term Covid Syndrome

This group reports "pending" symptoms that make it difficult to divide into any of the previous three groups. You have a disease that is related to part of the body – such as the respiratory system, brain, cardiovascular system, and heart, kidneys, intestines, liver, or skin – that only goes away later when new symptoms appear on another part of the body.

Dr. Maxwell said, however, that some patients have "classic" PICS symptoms. PICS occurs when critically ill patients suffer from a range of health problems after a long hospital stay.

It can cause symptoms like muscle weakness from being stationary for so long – an indirect cause of the virus itself – which can make basic tasks difficult.

PICS patients may have anxiety or other mental health problems or a brain dysfunction such as: B. the inability to remember things that may affect the patient's ability to return to work.

Some patients experience "fatigue and brain fog in a manner consistent with PVFS," a syndrome that occurs after infection after other viruses such as enterovirus or rubella.

"Some people have clear evidence of permanent organ damage caused by the virus, particularly lung and heart damage," said Dr. Maxwell.

It is not yet clear whether organ damage after Covid-19, which also occurs in the liver and pancreas, will be permanent.

However, the team admitted that a "significant" number of people fell into the fourth category and did not complain about persistent problems, but instead took a "roller coaster ride of symptoms moving around the body."

Dr. Maxwell described the fourth group with fluctuating symptoms that are temporary and therefore difficult to test.

She said, “A significant group has symptoms that don't fit into these categories. They describe a roller coaster ride of symptoms moving around the body rather than advancing toward recovery.

“We hear that some can start with a mild infection, often described as less severe than a previous chest infection, even though they didn't have a fever or cough. The symptoms then appear in different parts of the body such as the heart, skin or intestines.

We heard from a person who had never been to the hospital and who had a severe headache after six weeks that was later diagnosed as encephalitis.

"Others developed new arrhythmias and fainted up to six months after their symptom journey."

Such a wide range of symptoms and diverse medical conditions make it difficult for doctors to make a diagnosis, which means it is just as difficult for patients to get access to adequate care, they added.

It is unclear how many people are suffering from Long Covid.

WHAT ARE THE SYMPTOMS OF LONG COVID AND HOW BAD IS THE PROBLEM?

Covid-19 is described as a short-term illness caused by infection with the novel SARS-CoV-2 coronavirus. Public health officials tend to say that people will recover in about two weeks.

However, it is becoming increasingly clear that this is not the case for everyone and that the two week period is only the "acute illness" phase.

The North Bristol NHS Trust's Discover project, which is studying the longer-term effects of the coronavirus, is just one of a handful of studies that has shown the long-term effects of Covid-19. However, only hospital patients were examined.

A total of 163 patients with coronavirus were recruited for the study. Nineteen of them died. The rest were invited for a three-month investigation and 110 took part.

Most (74 percent) had at least one persistent symptom after twelve weeks. The most common were:

  • Excessive fatigue: 39%
  • Shortness of breath: 39%
  • Insomnia: 24%
  • Muscle pain: 23%
  • Chest pain: 13%
  • Cough: 12%
  • Odor loss: 12%
  • Headache, fever, joint pain and diarrhea: Less than 10% each

Patients who had had more severe Covid-19 reported more symptoms at their follow-up visit.

Other long-term symptoms reported by Covid-19 survivors, both suspected and confirmed, anecdotal, include:

  • Hearing problems
  • & # 39; Brain Fog & # 39;
  • Memory loss
  • A lack of focus
  • Mental problems
  • Hair loss

The effects of Long Covid on people with mild illnesses have not yet been thoroughly studied.

Data from King's College London's symptom tracking app shows that up to 500,000 people in the UK are currently suffering from the long-term effects of Covid-19.

According to Long Covid Support Group founder Claire Hastie, she said the persistent effects of Covid-19 put her in a wheelchair after being diagnosed in March.

A recent survey found that a third of UK doctors have treated patients with long-term Covid-19 symptoms such as chronic fatigue and anosmia.

However, the experts found that the UK Facebook support group, from which they pulled case studies, has 35,000 members and is likely an underestimate.

They added that Long Covid will put a "significant burden" on the NHS as more people develop it as the pandemic wears off this winter.

Using the evidence available, NIHR scientists interviewed people suffering from Long Covid and doctors.

They held a focus group of 14 members of the Long COVID Facebook group, including those who had the disease so mild it didn't cause a cough or fever, for those who were hospitalized.

The group described several unpredictable symptoms in the respiratory, heart, urine, brain, skin, intestines, muscles, and joints.

In their work, the researchers found that symptoms typically fall into four categories.

Some patients may have more than one "syndrome" or all of them at the same time, further confusing the limits of the disease.

Some people who started with mild illness may now have worse persistent symptoms than those who needed intensive care.

"For some people, there are very real mental and mental health problems," said Dr. Maxwell.

Dr. Maxwell said it was not clear whether this was due to the virus, which "had a direct impact on the brain," or whether there were complications with pre-existing mental health problems.

The paper states: "Steering group members also felt it was important to note that some of the mental health problems may be related to 'lockdown states' rather than the virus itself."

Researchers are reluctant to give a clear definition of "long covid" because they fear that people will be excluded from access to care.

Various researchers have tried to amalgamate the symptoms, but this was largely based only on those with confirmed disease.

The challenge of figuring out how many people have Long Covid mainly lies in the fact that it is not possible to test for Covid-19 afterwards.

If it were possible, it would ensure that people's symptoms followed Covid-19 and were not due to any other illness.

And it would also include all those who have never experienced the classic signs of the disease but have suffered long-term effects since then.

The scientists said they didn't like the term "long covid" because it was too "vague".

This can mean some patients struggling with lingering aftereffects will go missing if they don't fall into a set definition.

When asked how many people have this disease, Dr. Maxwell: “We don't know. But what I can say is that the Facebook group currently has over 35,000. & # 39;

Health officials previously estimated that 60,000 people could suffer from the effects of Covid-19 in the long term.

Dr. Maxwell said, “It is reasonable to assume that it is bigger than people have already estimated as there are many people who have not had a Covid test and have therefore been excluded from the reviews.

"It is significant and will be a major burden on the NHS."

"The number of people with long covid is likely to increase in the coming months," she added.

The team said it cannot be assumed that people at lower risk of serious illness and death from Covid-19 are also lower at risk of persistent Covid.

There are a number of other aspects that are unclear because there is simply not enough evidence yet.

Dr. Philip Pearson, a respiratory doctor at the NHS Trust at Northampton General Hospital and a member of the steering group, said, “Is Long Covid one or four things? We do not know it.

& # 39; What is the prevalence of four in hospital patients and four in hospital patients? We do not know it.

“What are the risk factors for each of the things and are they the same for hospitalizations and deaths? We do not know it. What is the economic impact? We do not know it.

"This thing seems easier to say what it is not than what it is.

"It doesn't just recover from pneumonia. If someone who is fit and healthy develops pneumonia, I would expect them to recover steadily and return to normal within two to three months. It's not."

Dr. Maxwell added that some people with mild infection may have worse persistent symptoms than those who are most critically ill, while those who have been in intensive care have no persistent symptoms.

“There are people who have never had hospital support, never had a test, and have no record of ever having Covid, other than their own personal history. You may suffer far more than someone who has been ventilated for 21 days, "said Dr. Maxwell.

Scientists said that more work is needed to help those who suffer, as they said that many "are not believed" when they seek help.

The wide variety of symptoms and disease patterns make it difficult for doctors to diagnose, which means that it is just as difficult for patients to access adequate care.

Understanding the differences between the syndromes and their effects is critical to patient recovery, said Dr. Maxwell.

"People without a clear diagnosis tell us that often the health service doesn't believe them," she said.

& # 39; Those who have been diagnosed in other parts of the service and not always recognized.

& # 39; We were told just last week that someone diagnosed with Long Covid by his family doctor who is now 7 months old (sick) called an ambulance because of a new symptom and fainting and dizziness Rescue workers that it was caused by a panic attack. & # 39;

The team requested that anyone who believes they are suffering from long-term aftereffects be recorded as such on their NHS records.

Then the health service should take a “work diagnosis” approach to help those in need.

The scientists emphasized that understanding the effects was still at an early stage when they asked people with the aftermath to get involved in the research.

COUPLE WHO SUFFERED COVID FOR A LONG TIME WRITE YOUR WILL

Dr. Joanna House and her partner Ash

Dr. Joanna House and her partner Ash

A couple suffering from Long Covid have said they wrote their will because they were so unsure of their health.

Dr. Joanna House, a senior scientist on climate change at the University of Bristol, and her partner Ash, whose middle name is unknown, caught the coronavirus in March this year.

Jo and Ash, whose age and location are also unclear, went to help an elderly neighbor who had fallen into his house. What none of them knew was that they had Covid-19. Tragically, he died of it a few days later.

After Jo and Ash were in close proximity to their neighbor for a long time, they got Covid-19 themselves, as did one of their sons.

While their son is now thankfully doing well, seven months later Jo and Ash experience persistent Covid-19 symptoms, including shortness of breath, fatigue, tachycardia and “brain fog”.

Since they were not hospitalized, they were not tested at this point, although Jo later had their Covid-19 confirmed.

They both remain unemployed and find everyday chores difficult as their teenagers do most of the cooking and cleaning for them.

Her experiences in dealing with the health sector have been mixed and at times very frustrating.

The couple feel they have no formal recognition of their illness and only have limited access to holistic care and support that could help them overcome it.

Jo said, “Even on a good day we only get a few short bursts of energy, and some days it's a struggle just going downstairs to make a cup of tea.

“Without the formal recognition of Long Covid and the support that comes with it, we feel in limbo – there is just so much uncertainty about our health, our work and the future for us and our boys. We even wrote our will in case the worst happens.

& # 39; This is not a & # 39; mild & # 39; disease. What we are really looking for right now is recognition for ourselves and others who have had problems at home and have not been tested so that we can be monitored and the right services provided to us at the right time.

"That would be huge, and with that we could hopefully get back to a kind of normalcy."

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