What M.E? An update

by John Darvall

Since Naomi and her family shared her story and her video together with the publishing of my blog on ME I have been astounded by the response. And shocked. And heartbroken. I have also learned that a very good friend of mine also lives with a mild form of ME and I’ve known them for 10 years. That is two people close to me who have ME. Coincidence or a painful reality? Why didn’t I know? How many more?

If you can take the time to read some of the comments to my original blog you may feel the same too. What has become clear to me is there is a whole world, more than just the potentially under estimate of 250,000 people in the UK, living with ME. Some of the comments and stories shared are uplifting, others may make you cry. The biggest issue is ignorance and belief in ME, and I include myself in this. To those who have criticised my blog thank you as you are right. I have a lot to learn. 

As a journalist, having talked, seen and listened to those with ME, I will do more to learn, educate and explore what can be done. In the coming weeks on the BBC radio programme I am privileged to do you will hear from those raising money to help diagnose, treat and maybe even cure ME. You will also hear from more from those who live with ME and from experts in pain management, where I hope they will take calls from anyone listening. I will let you know when all this is happening.

If there is something, anything else you feel I can do then post it on here. All ideas and insights will be considered by me and my very small but brilliant programme production team.

Thank you for sharing your stories and I will try to do what I can to raise the profile, expose and tell the story of ME with your help and support. 

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