Thank you for this, it’s extremely interesting and I hope someone who has leverage might read this too!
I would also like to see research exploring the overlap of ME/LC with hEDS. Often the most severe ME/LC patients have more hEDS-type symptoms as well as POTS and MCAS – all of which are features of both illnesses that correlate with severity.
Given the kallikrein genes have just been found as a possible cause for a high proportion of hEDS patients, and explain the link between all of these issues and others such as coagulation and RAAS problems, it seems urgent that this important link be studied further.
Thanks - some great ideas to get started. I especially like the idea of 10-20 centres of excellence in the UK with funding for both research and clinical work. If well publicised this would give local healthcare practitioners somewhere they can go to ask for advice, as is already available for other diseases.
Thank you for this, it’s extremely interesting and I hope someone who has leverage might read this too!
I would also like to see research exploring the overlap of ME/LC with hEDS. Often the most severe ME/LC patients have more hEDS-type symptoms as well as POTS and MCAS – all of which are features of both illnesses that correlate with severity.
Given the kallikrein genes have just been found as a possible cause for a high proportion of hEDS patients, and explain the link between all of these issues and others such as coagulation and RAAS problems, it seems urgent that this important link be studied further.
Thanks - some great ideas to get started. I especially like the idea of 10-20 centres of excellence in the UK with funding for both research and clinical work. If well publicised this would give local healthcare practitioners somewhere they can go to ask for advice, as is already available for other diseases.