Information for people experiencing Long COVID and their whānau

Updated 6 September 2021

 

Long COVID is the name given to the symptoms experienced by people after the initial COVID-19 infection. You might also hear it called post-COVID syndrome, long-haul COVID, post-acute COVID syndrome (PACS),  chronic COVID, or post-acute sequelae of SARS-CoV-2 infection (PASC).

Common Long COVID-19 symptoms Can include:

  • Fatigue
  • Shortness of breath
  • Cough
  • Low mood
  • Headaches
  • Difficulty concentrating (‘brain fog’)
  • Chest pain
  • Joint pain
  • Muscle pain and weakness
  • Persistent loss of sense of smell or taste
  • Fast-beating or pounding heart

Additional symptoms can be viewed in a handy image here.

Researchers have reported Long COVID worldwide, and we are also seeing people experiencing Long COVID in New Zealand.

Some people appear to experience more serious long-term complications of COVID-19, although these are not as common.

Even people who had a mild case of COVID-19 are experiencing Long COVID 12 or more months after the acute illness. Research is emerging suggesting that Long COVID is more likely in those who have many other health conditions, and are female.

As Long COVID is still new, scientists and health professionals are still working out the best ways to manage and treat it. Currently, they are figuring out the best rehabilitation methods for those with Long COVID. In Scotland, Ireland, and the U.S. there have been announcements for large funds dedicated to Long COVID patient research and rehabilitation. In New Zealand, the Ministry of Health has recently funded research on Long COVID.

The lack of information about Long COVID can be frustrating for people experiencing it. Remember you are not alone; there are people all around the world experiencing Long COVID. Tips and advice can be found in the Resources Lists below. There are online groups established for people with Long COVID where you can get support and meet others experiencing this condition:

         Body Politic Support Group

         Facebook group for Long COVID N.Z.

Facebook group for Long COVID U.K.

Long COVID group for kids

Patient-Led Research Collaborative

Twitter @LongCovidNZ

 

For support around the management and treatment of your Long COVID symptoms, please seek the help of your G.P. or health care team. It is essential to contact your G.P. if you develop any new or worsening symptoms such as:

  • Swelling of a leg or arm.
  • Losing more weight.
  • A fast-beating or a racing heart.
  • Muscle aches
  • Dizziness

Dial 111 or seek urgent medical care if you:

  • Are coughing up blood.
  • Have severe chest pain.
  • Are getting more breathless.

Remember if you need someone to talk to you can free call or text 1737 any time of the day or night to speak with a trained counsellor.

Tracking Symptoms

Because of the lack of clarity around the symptoms and experiences of Long COVID some patients may find it useful to keep track of their symptoms. Tracking (or keeping a log) of your symptoms can help better understand your symptoms, identify which symptoms impact you most, and identify patterns and changes in your symptoms.

You may also find it useful to take this to your appointments with your healthcare professionals when discussing your Long COVID symptoms. There are apps you can download for this purpose. If you prefer a paper version, an example can be found here.

Vaccines

There are preliminary reports from the U.S and the U.K that Long COVID patients are experiencing improved symptoms after their second vaccine shot. However, so far there are no peer reviewed studies on the impact of vaccines on Long COVID and therefore these reports should be interpreted with caution. Scientists are urgently calling for studies in this area.

More information

Internationally efforts are underway to understand why Long COVID develops and how best to manage or treat it. This page will be updated as new evidence becomes available.

For more information about Long COVID, please see the resource list below or go to Information for G.P.s and other health professionals.

Resource list

Social Media

@LongCovidNZ

Facebook group for Long COVID N.Z.

 

Websites

Centres for Disease Control and Prevention

Covid Symptom Study

National Health Service

NYC Health and Hospitals

Office for National Statistics, U.K.

Office for National Statistics, U.K. Long COVID study updates

Patient-Led Research Collaborative

Patient Safety Learning

Survivor Corps

UC San Diego Health

World Health Organization. Coronavirus Disease (Covid-19)

 

Articles

Akili to study EndeavourRx as a COVID-19 brain fog treatment

Clinical Sequelae of Covid-19 Survivors in Wuhan, China: A Single-Centre Longitudinal Study

Coronapod: counting the cost of long COVID

Coronavirus: Hong Kong study shows significant percentage of recovered patients struggle with memory loss, depression

Coronavirus: Vaccines unexpectedly appear to fix 'Long COVID'

COVID-19: Long COVID clinics may be needed beyond April next year

COVID-19 survivor experiencing long-term symptoms

Do kids get long COVID? And how often? A paediatrician looks at the data.

Early Rehabilitation in Post-Acute Covid-19 Patients: Data from an Italian Covid-19 Rehabilitation Unit and Proposal of a Treatment Protocol

In it for the Long Haul: More questions than answers on the lasting health effects of COVID-19

Long Covid: 'I can't walk 10m without a rest'

Muscle Strength and Physical Performance in Patients without Previous Disabilities Recovering from Covid-19 Pneumonia

New Zealand COVID-19 long-haulers still suffering long-term effects a year on

NZ Herald Article.

NIH Announce Funding

Patient Outcomes after Hospitalisation with Covid-19 and Implications for Follow-Up: Results from a Prospective Uk Cohort.

Persistent Symptoms 3 Months after a Sars-Cov-2 Infection: The Post-Covid-19 Syndrome?

Radio New Zealand, Musical Chair: Jenene Crossan

Should children get COVID vaccines? What the science says

Some Long COVID patients feel much better after getting the vaccine

Some long-haul covid-19 patients say their symptoms are subsiding after getting vaccine

The Economist

The Many Strange Long-term Symptoms of COVID-19 Explained.

The mystery of ‘Long COVID’: Up to 1 in 3 people who catch the virus suffer for months. Here’s what we know so far

The Silent Pandemic - Video

What Are the Long-Term Health Impacts of Coronavirus?

What Covid-19’s long tail is revealing about disease

What if You Never Get Better from COVID-19?

 

Contact Us

For more information about this website or the information presented, please email us as longcovidnihi@auckland.ac.nz

 

The information on this page was prepared by multi-disciplinary health professionals at the National Institute for Health Innovation and affiliates and was originally created on 9 December 2020.