Published: 15/03/2023 Tags: Medical & Scientific News

Long Covid Awareness Day

March 15, 2023, is the first International Long Covid Awareness Day.  

Many people in the EDS and HSD community will already have the symptoms described in Long COVID without ever having had COVID-19. A recent survey of The Ehlers-Danlos Society’s Global Registry showed (from 1340 responses) that even prior to COVID-19’s appearance 98% of people had joint pain and chronic fatigue and 74% had breathing difficulties. Other common concerns include POTS and MCAD. 

One of the challenges now is knowing whether new or worsening symptoms are due to concerns already seen in conditions like HSD or EDS, due to catching COVID-19, or due to both compounding each other. Either way, we hope the clinics and research set up to support people with Long COVID will help generally in advancing the understanding and treatment of these chronic symptoms. 

We believe there are important transferable skills between the clinics and clinicians assessing and caring for people with all these chronic and complex conditions, whether a person is seen for Long COVID or EDS or HSD, or both: 

  • Multiple complex concerns requiring a multidisciplinary approach (MDT) 
  • Listening and validation 
  • Full assessment and follow-up 
  • Impact on quality of life, and psychosocial well-being 
  • Multiple treatment modalities are likely needed 
  • Supportive, long-term, self and medical management  

There are also mechanisms and common conditions shared between Long COVID and EDS or HSD and other conditions:  

  • Inflammation, including the central nervous system  
  • Immune dysregulation 
  • Dysautonomia 
  • Mast cell activation 
  • Changes in the microbiome 
  • Tissue damage 

In addition, we are aware of recent findings in the scientific literature that suggest COVID-19 infection and/or reactions to COVID-19 vaccinations may have a variety of effects on the extracellular matrix. This gives intriguing insights into aspects of collagen and matrix biology that may be relevant to further understanding EDS, HSD, and other connective tissue disorders. However, currently, there is no clear evidence that COVID-19 infection causes EDS or HSD. 

Research into Long COVID may benefit the EDS and HSD community. The Ehlers-Danlos Society had a lot of progression with research in 2019 which was then stopped due to COVID-19. We are delighted to now again be funding and accelerating research into the comorbidities seen in EDS and HSD.  

The Ehlers-Danlos Society will shortly be announcing a survey exploring our community’s experience of COVID-19 vaccinations and their experience of infection with COVID-19, including Long COVID. We continue to work closely with our academic and clinical experts, other charities and coalitions working in this area, and the EDS and HSD community to understand all the implications of COVID-19.

The Ehlers-Danlos Society is delighted to have joined the Core Steering Committee of the Long COVID Alliance, a network of patient advocates, scientists, disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policymakers and accelerate research to transform our understanding of post-viral illness. Their goal is to transform the current understanding of Long COVID and related post-infectious illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorder (HSD) and mast cell activation syndrome (MCAS), autoimmune diseases and other related illnesses. To learn more, please visit  

Find further information on COVID-19, EDS, and HSD, here.

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Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

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