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What is Long COVID?

'Long COVID' is used as a generalised term describing the ongoing, or developing symptoms, that occur 3 months after an initial COVID-19 infection. People with Long COVID often experience numerous, overlapping symptoms that can fluctuate and change over time.

Did you catch COVID months ago and feel like you haven’t fully recovered?

 

Like ME/CFS, Long COVID can affect many systems in the body - and while there are core symptoms, if can affect individuals slightly differently and is often not easy to see by others.

Anyone can develop Long COVID, including tamariki (children). You don't need to have tested positive for COVID-19, and you could have had the virus without symptoms or only mild symptoms, and still get Long COVID.

 

It is being seen across all demographics throughout the world. Around half of the people diagnosed with Long COVID will also meet the diagnostic criteria for ME/CFS.

There are several hypotheses for why people experience Long COVID after their initial COVID-19 infection, but researchers are still looking into the causes of the illness.

Some suggest there may be a level of virus remaining that continues to trigger inflammation in the body, others suggest it is an autoimmune response to the virus, due to disrupted clotting pathways or changes in the mitochondria in our cells, which are the powerplants of our cells that make the energy our body needs. Some equate Long COVID to severe imbalance in the gut microbiome, as well as irreparable tissue damage.

 

It is likely that a combination of these factors contribute to the symptoms and experiences of people living with Long COVID.

3

MONTHS

+

Long COVID = when symptoms continue or develop longer than 3 months after having COVID-19
1 in 5 people who have COVID-19 develop Long COVID
COVID-19 can cause the relapse or onset of another underlying condition
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Symptoms of Long COVID

People with Long COVID often experience numerous, overlapping symptoms that can fluctuate and change over time. These symptoms affect many systems of the body, including the cardiovascular, neurological, and respiratory systems.

Given that Long COVID and ME/CFS are both predominately post-viral illnesses the majority of their symptoms are the same, with a few exceptions.

Dysautonomia, which is a collection of symptoms caused by a problem with our autonomic nervous system, Orthostatic Intolerance (OI) and Postural Orthostatic Tachycardia (POTs) also contribute to these symptoms.

Key Symptoms:

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Ongoing fatigue
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Post Exertional Malaise (P.E.M.) - worsening fatigue or symptoms after activity
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Impaired cognition, memory loss or 'brain fog'
Unrefreshing sleep
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Other Symptoms:

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Breathing difficulties
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Chest pain, heart palpitations or high heart rate
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Ongoing cough
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Flu-like symptoms - including sore throat and swollen glands
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Body aches and pain
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Orthostatic Intolerance (heart rate or blood pressure abnormalities including POTS)
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Circadian rhythm disruptions (sleep/wake cycle dysfunction)
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Temperature irregularities
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Increased allergy response
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Feelings of loss and grief, as a result of physical illness symptoms
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Sensitivity to light, sound or vibration, taste, odour or touch
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Gastrointestinal symptoms
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Poor temperature regulation - cold or heat intolerance
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New food or chemical sensitivities
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Increased levels of inflammation
Headaches or migraines

Underlying Conditions

For some people the COVID-19 virus can cause the relapse of previous condition or reveal an underlying condition that you didn’t know you had.

 

This can include: 

  • diabetes

  • heart disease

  • thyroid problems

  • cardio-respiratory conditions

  • musculoskeletal conditions

  • Neurological conditions, or

  • autoimmune disorders, like arthritis 

 

If think any of your symptoms relate to these conditions, please discuss this with your doctor or health provider.

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Do you have Long COVID?

If you have Long COVID there are a number of things we suggest:

  • Look out for symptoms of dysautonomia and related conditions and talk with your doctor about testing for POTS, then look at the treatment options available.
     

  • Use the symptom list to confirm your symptoms then track them to work out what makes your symptoms better or worse and what triggers them.
     

  • Use the spoon theory and other pacing tools, to start pacing, prioritising and planning your activity to avoid getting Post exertional malaise and making your symptoms worse.
     

  • Use breathing exercises, yoga or other tools to calm the nervous system and promote rest.
     

  • Check out our resources section for more information and illness management options.
     

  • Join our online Facebook Support group.
     

  • Become a member for free to access specifically developed resources and videos, our online support groups and if you are in Auckland chat with our Client Support Coordinators about how we can help you directly.

This is a series of videos about what Long COVID is, diagnosis, symptoms, various symptom management strategies, how to work with medical professionals and where to get more support.

We’ve worked with the country's leading Long COVID and ME/CFS experts, as well as real New Zealanders living with Long COVID, and you'll hear from both in these videos.

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Other disorders linked with ME/CFS and Long COVID

ME/CFS often occurs comorbidly alongside the following disorders:​

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How you can help

ME Support is funded entirely by grants and donations.

By donating you will be helping to provide valuable services that are not readily available through the public health system.

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