We would like to make a statement underlining the position of the two charities with regards to the current work being done in Ehlers-Danlos syndrome via global professionals and the negative and hurtful responses that many of those involved have recently been subjected to. We are extremely grateful to all our medical advisors for taking a lead in reviewing the latest evidence regarding all aspects of EDS and highlighting the gaps to be further investigated.
It is our belief that this important work will lead to valuable new information which will only be respected by all medical, generic health and social care professionals (and our service providers) if they can be confident in the validity of the evidence used to base this information on. Therefore, only strong research-based evidence should be considered in any new guidance. Where there is no evidence to support anecdotal reports or claims of potential associated symptoms this can only be addressed by conducting new research.
This is an exciting time for our community. We understand that change can feel threatening and not everyone will agree with the changes which may emerge. It is normal for different opinions to surface through discussion. This is how knowledge is advanced. We understand that many people feel very passionate about the subject and everyone’s opinions are equally valid.
However, we would like to stress that neither charity will allow personal attacks on any of our medical advisors, or others involved with the work, on our social media platforms. We will not tolerate any abusive behaviour towards medical advisors or other professionals and we are greatly saddened by recent occurrences which only serve to impede the good work that is being done for all our benefit.
Our shared medical advisors, Donna Wicks (HMSA, CEO), Kay Julier (EDS UK, Managing Director) and staff/volunteers of both organisations work tirelessly to ensure that our members’ concerns are well represented. Both the HMSA and EDS UK welcome any constructive comments to be sent to the charities by email firstname.lastname@example.org and email@example.com