This post is us metaphorically lighting the beacons of Gondor, hoping someone somewhere will come to our aid. If anyone knows of a doctor in the UK who is knowledgable about (and treats) the complex heart problems that can be involved in M.E. (left ventricular diastolic dysfunction, compensated idiopathic/diastolic cardiomyopathy etc) please contact us here: [email protected]
If you are a doctor who fits the above criteria, before contacting us, please read this: https://www.jkrowbory.co.uk/severe-me-and-me-–-my-story/ to understand Jenny’s situation better and to get a better idea if you can help us. We realise that there are only one or two doctors in the country who are knowledgeable about both M.E. and the heart problems involved in the illness, but we are hoping to find someone. As parents we are worried and stressed beyond belief. Thank you for reading. Please light the next beacon of Gondor and pass on the call for help.
(NB Please only recommend a doctor if you are 100% certain that they know about heart dysfunction in M.E. (especially diastolic dysfunction). Also, don’t suggest Dr Myhill or Breakspear Hospital as Jenny has been treated by both and neither were able to improve her condition.)