An article follows with some very interesting, but early stage, research into long covid. This research has not been peer reviewed, but illustrates the need for far more research and investigation to be carried out in this rapidly evolving field.
You may also want to watch the recent talk on Long Covid, with tips and advice from our Lead Medical Advisor, Dr Philip Bull.
From the authors: This study found that widespread / generalised joint hypermobility (GJH) was more common than might be expected in people with Long COVID. Among the complications of Long COVID, people with GJH were more likely to report significant joint, muscle, and nerve pain, and brain fog compared to people who were not hypermobile. Joint hypermobility may be a risk for neuromuscular symptoms in Long COVID.
People with Long COVID and ongoing brain fog, joint, muscle and nerve pain, are more likely to have Generalised Joint Hypermobility
Alan J Hakim, Philip Bull, Gez Medinger
Here, we share the first evidence, to our knowledge, that widespread or so-called generalised joint hypermobility (GJH) may be a risk factor in adults for certain chronic symptoms in Long COVID.
We consider how this might lead to a diagnosis of hypermobility spectrum disorder (HSD) or Ehlers-Danlos syndrome (EDS) in people with Long COVID, and how it might relate to worsening of existing symptoms in people already known to have HSD or EDS.
Long COVID Symptoms – New Challenges, and Potential Opportunities
As the World learns more about the many symptoms and complications of Long COVID, so it becomes clearer to all of us living with or supporting people with conditions like hypermobility spectrum disorders (HSD), Ehlers-Danlos syndromes (EDS), Myalgic encephalitis or chronic fatigue syndrome (ME/CFS), and fibromyalgia (FM), that many concerns seen in Long COVID share similar comorbidities with these conditions.
Symptoms and concerns such as joint pain, muscle pain, fatigue, fast heart rate from dysautonomia (Postural Tachycardia Syndrome (PoTS)), gastrointestinal dysfunction, anxiety and depression, and mast cell activation are all too familiar to many people living with HSD, EDS, ME/CFS, or FM.
It may be that they all share similar mechanisms that cause similar disease. As researchers learn more about the biology of Long COVID and its treatment we hope to learn more about how this can help people in our communities with conditions like HSD, EDS, ME/CFS, and FM.
Several risk factors for developing Long COVID have been suggested in studies published so far. However, none of these have looked at widespread (generalised) joint hypermobility (GJH) as a risk for symptoms seen in Long COVID. The potential extension to that is that conditions like HSD or EDS might be risk factors, but we do not know this at this time.
It may be that the symptoms from Long COVID expose the fact that someone has HSD or EDS because they present with the infection as the trigger for becoming ill or the infection worsens symptoms that a person was previously coping with.
Also, those already with a diagnosis of HSD or EDS report that their symptoms, including things like dysautonomia or GI concerns for example, get much worse during and after COVID-19 infection and look just like the chronic ill-health issues people have with Long COVID.
Who did we survey and what did we do?
Gez Medinger is a prolific researcher and writer, and co-author of The Long Covid Handbook (Penguin Books). Early in the COVID-19 pandemic he started collecting data on people whose symptoms from acute COVID-19 were not fully recovering – we would all soon learn to recognise this
phenomenon as Long COVID. Gez collected information on just over a 1000 participants from the general population.
Two and a half years later Philip Bull and Alan Hakim, Rheumatologists, and experts in joint hypermobility-related disorders, joined Gez in a follow-up survey of the participants that had taken part in Gez’s first survey. In this second survey data was collected on many things that included:
· How well people felt now compared to before catching COVID-19
· What ongoing symptoms they had, and which of them had the most negative impact on wellbeing
· Whether participants had GJH – for this the 5-part questionnaire designed by Dr Alan Hakim and Prof. Rodney Grahame was used.
The 5-part questionnaire for generalized joint hypermobility
If a person answers ‘yes’ to 2 or more of these questions listed below, then they are highly likely to have generalized joint hypermobility.
-
Can you now (or could you ever) place your hands flat on the floor without bending your knees?
-
Can you now (or could you ever) bend your thumb to touch your forearm?
-
As a child did you amuse your friends by contorting your body into strange shapes OR could you do the splits?
-
As a child or teenager did your shoulder or kneecap dislocate on more than one occasion?
-
Do you consider yourself double-jointed?
What did we find?
The average age range of the 1000 participants in the survey was 45-54 years old. Sixty percent of the participants were between 35-54 years of age, and 30% aged 55 and over. The age distribution was the same in participants with GJH compared to participants who did not have GJH.
Among the 1000 participants, 285 (28.5%) had GJH. GJH was more common in females (32% of the female participants) than in males (12% of male participants) - female and male recorded in the survey as sex assigned at birth.
Participants were asked to score their health between 1 and 10, where 1 was the poorest health imaginable, and 10 was perfect health.
Before catching COVID-19 the whole group had an average score of 8.5.
After catching the infection, and now living with Long COVID, the whole group had an average score of 4.4.
The average scores before and with Long COVID were the same when we looked at females vs males, and when we looked at participants with GJH vs participants without GJH.
But we found that participants with GJH and Long COVID were more likely to report significant concerns over pain and brain fog compared to participants without GJH.
Participants with GJH were:
70-80% more likely to report joint pain, nerve pain, and numbness
and
30-40% more likely to report muscle pain and brain fog
However, although lots of participants were also affected by physical fatigue, palpitations or breathlessness, participants with GJH did not describe these symptoms as more concerning compared to participants without GJH.
What can we learn from this?
In adults of all ages with Long COVID, GJH appears to be associated with a higher risk of joint, muscle and nerve pain, and cognitive fatigue (brain fog). The reasons for this need further research but in clinics and Long COVID services we may see this presenting as people with HSD. With further testing in clinic, we may potentially identify more people with EDS.
As well as it leading to a diagnosis of a hypermobility syndrome, looking for joint hypermobility in Long COVID clinics is important because it may change the way people with Long COVID are treated / advised regarding physiotherapy and exercise.
In addition, the COVID-19 pandemic has put a spotlight on symptoms that are frequently observed in patients already known to have a hypermobility syndromes. These symptoms include joint, muscle and nerve pain, dysautonomia (including POTs) and mast cell activation disorders (MCAD).
We see two key opportunities
First, this gives doctors and therapists familiar with treating Long COVID the opportunity to help patients with hypermobility syndromes and vice versa. They have the knowledge using “transferrable skills” to help both the Long COVID and the hypermobility syndromes community. They also have the transferable skills to help people with ME/CFS or FM. This is something which should be addressed in both primary or community care and in hospital care – taking the opportunity to share knowledge and experience, and healthcare resources for all people suffering with these conditions.
Second, the increase in research into these issues should speed up our understanding of the causes for comorbidities and how they may be better treated – improving the lives of all people with these conditions.
We encourage clinicians and scientists to work closely together to understand the science and we raise the idea and hope that their transferable skills can translate into more services and better care for the HSD and EDS community.
Further education on management of hypermobility syndromes and transferrable skills is available in the HMSA Education Model and the EDS ECHO, the Ehlers- Danlos Society.
EDS ECHO is https://www.ehlers-danlos.com/echo/
The education model link is https://www.hypermobility.org/hmsa-education-model
Published 14/03/2023