COVID-19 [Coronavirus] Update

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: 

• WHO
• United Nations
• CDC
• The CDC also has information on the similarities and differences between Flu and COVID-19 infection here.
• European Union

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 

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 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.

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.

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 Hypermobility, Study finds people with joint hypermobility may be more prone to long COVID, Mallick 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.