COVID-19 [Coronavirus] Update

Updated: April 2, 2024

EDS - COVID-19 Update
  • 2024 Latest Updates
  • 2020-2023

Our community can find updated information on COVID-19 here. Information collated between 2020 and 2023 can be found in the legacy tab on our COVID-19 webpage. 

The information here includes updates on: 

  • Guidelines on COVID-19 infection from major national and international health organizations including the WHO, CDC, ECDC 
  • The Ehlers-Danlos Society Events COVID-19 and mask policy 
  • The Long COVID Alliance 
  • How to participate in The Ehlers-Danlos Society’s COVID-19 vaccination and infection survey 
  • Risk factors for long COVID 
  • Updated guidelines on COVID-19 infection from major national and international health organizations

    The most up to date information on COVID-19 infection prevention, symptoms, testing, vaccinations, and treatments that can be found at each of the following sites: 

    Most government websites will have updates too, including guidance on international travel. 

    Internationally many Public Health experts and national healthcare organizations have moved to a policy of managing COVID-19 like FLU. COVID-19 isn’t going away, and people are still catching it, but the new normal and the consensus internationally is that the threat it poses, and harm is causes continues to go down due to higher population immunity from prior infection or vaccination, and the availability of effective life-saving antiviral treatments. 

    The CDC website lays out helpful information on the following: 

    • Hygiene 
    • Preventing spread when you are sick 
    • Masks 
    • Physical Distancing 
    • Testing for Viruses 
    • Immunizations 
    • Treatment 
  • The Ehlers-Danlos Society Events COVID-19 and Mask Policy

    At the Ehlers-Danlos Society, we prioritize the safety and well-being of our community. Our COVID-19 policy is informed by current guidelines from the CDC and WHO, following industry practices and acknowledging the latest published research. 

    View our COVID-19 Mask Policy here.

  • The Long COVID Alliance

    The Ehlers-Danlos Society is a founding partner in the Long COVID Alliance and continues to support this important voice for all communities affected by long COVID. 

    You can read more here.

  • Participate in The Ehlers-Danlos Society’s COVID-19 vaccination and infection survey

    The DICE EDS and HSD Global Registry is an important tool in collaborative research. It allows members of the community to complete surveys and share medical information, in order to assist with research into EDS and HSD. 

    It enables researchers worldwide to advance the understanding of the EDS, HSD, and related symptoms and conditions, by sharing new research surveys for registry members to participate in.

    Each person who joins will help:

    🧬Map the experiences of those living with EDS and HSD, globally.
    🧬Enable the gene search and other biological markers for Ehlers-Danlos syndromes and hypermobility spectrum disorders.
    🧬Facilitate research into the frequency of related symptoms and conditions, which may be associated with the various types of EDS and HSD.
    🧬Discover new types of EDS.
    🧬Understand the relationships between EDS and HSD, and chronic pain, anxiety, and other problems such as neurological, mast cell, gastrointestinal, and autonomic disorders. 

    Once a person has joined the DICE registry they can participate in new surveys and studies. The COVID-19 vaccination and infection study is one of these surveys.

    The DICE Registry is accessible globally, and participation is free to all.

  • Risk factors for long COVID

    Many studies have been done looking at the risk factors for developing long COVID. In 2023, a review by Tsampasian et al. of 41 studies that included a total of 860; 783 patients showed that there were certain risk factors that are strongly associated with a higher risk of developing post-COVID conditions (PCC), i.e., long COVID. These are: 

    • Female sex 
    • Older age 
    • Higher Body Mass Index 
    • Smoking  
    • Anxiety and/or depression 
    • Asthma 
    • Chronic obstructive airways disease 
    • Diabetes 
    • Ischaemic heart disease 
    • Immunosuppression, and  
    • Patients who needed hospitalization or ICU care during the acute phase of COVID-19 infection

    Immunosuppression can be a feature of many conditions, including some people with EDS who have an immune deficiency disorder. The causes of immunosuppression include: 

    • Chemotherapy or radiotherapy, solid organ transplant recipients, bone marrow or stem cell transplant recipients 
    • Genetic disorders affecting the immune system (e.g., immunoglobulin deficiencies, complement disorder) 
    • Haematological malignancy such as leukaemia, lymphoma, and myeloma 
    • Immunosuppressive or immunomodulating biological therapy, including those use in some people with mast cell activation disorders 
    • Moderate to high dose long term use of corticosteroids 
    • Non-biological immune modulating drugs used, for example in rheumatic conditions like SLE and rheumatoid arthritis, e.g., methotrexate, azathioprine, 6-mercaptopurine or mycophenolate 
    • Any auto-immune diseases that require long term immunosuppressive treatments.

    In the review by Tsampasian et al., vaccination (with 2 doses or more) for COVID-19 was noted to have a protective role against PCC—vaccinated patients had a significantly lower risk of developing the persistent symptoms of PCC. 

    Ref: Tsampasian V, Elghazaly H, Chattopadhyay R, et al. Risk Factors Associated With Post−COVID-19 Condition: A Systematic Review and Meta-analysis. JAMA Intern Med. 2023;183(6):566–580. doi:10.1001/jamainternmed.2023.0750 

    More recently, two studies have found generalised joint hypermobility to be a possible additional risk for developing chronic symptoms of musculoskeletal (MSK) pain and cognitive fatigue after COVID-19 infection (Hakim et al., 2023; Eccles et al., 2024). 

    In people with long COVID there was about a 30% extra chance that a person with MSK pain and cognitive fatigue also had generalised joint hypermobility. It is not clear why this relationship with joint hypermobility exists. Studies of people known to already have HSD, EDS, and other heritable disorders of connective tissue have not yet been done to see if they are specifically at risk of long COVID from their underlying condition. However, these two studies might be giving insights into viral infections in general being the trigger for MSK symptoms that constitute HSD and the trigger for comorbidities in HSD and EDS.  

    Lots of studies have looked at the symptoms in long COVID, including postural tachycardia syndrome (Mallick et al., 2023). The two studies did not find that people with hypermobility were more likely to have POTS than non-hypermobile people long COVID. 

    Clinics looking after people with long COVID should be aware that some of their patients have HSD or EDS.  

    Ref: Long Covid and Generalized Joint HypermobilityStudy finds people with joint hypermobility may be more prone to long COVIDMallick D, Goyal L, Chourasia P, Zapata MR, Yashi K, Surani S. COVID-19 Induced Postural Orthostatic Tachycardia Syndrome (POTS): A Review. Cureus. 2023 Mar 31;15(3):e36955. doi: 10.7759/cureus.36955. PMID: 37009342; PMCID: PMC10065129. 

From the onset of the Coronavirus (COVID-19) pandemic, The Ehlers-Danlos Society learned from its Helpline and Support Group program that members of the EDS and HSD community were experiencing a deterioration in well-being considered to be a consequence of disruption to normal levels of care, and, imposed social restrictions. Here you can read about two studies that have explored the experiences of people with EDS or HSD; the first titled “Self-Reported Changes in Health Status During the Coronavirus Pandemic: A Survey of Individuals with Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder,” and the second titled “The Impact of the COVID Pandemic on Dietary Changes and Gastric Symptoms in People with Ehlers- Danlos Syndromes.”

The Global Registry for EDS, HSD, related symptoms, and associated conditions was established in 2016. The DICE Global Registry houses diagnostic, demographic, and medical history data on over 10,000 participants of all ages worldwide with either EDS or HSD. Using the DICE Global Registry, the study aimed to explore the impact of the COVID-19 pandemic on the EDS and HSD community.

In December 2023, we launched our latest survey on the COVID-19 infection experiences of people with EDS or HSD and their COVID-19 vaccinations. You can join the Global Registry if you would like to take part and take this survey here.

Our current mask policy for events and meetings can be found below.

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