Pulling myself together after the horrendous news that the Norwegian final clinical trial of the drug rituxamib proved unsuccessful.

The previous clinical trial with rituxamib which had shown great results had been a huge beacon of light and hope for all suffering with ME. As the actual clinical trial had recently ended we had not expected news until the spring of 2018 so devastated to hear yesterday the bad news from Drs Fluge and Mella. But I am also grateful that they have let us know now as many of us were making plans on whether to travel to Norway for private treatment and hopeful of a clinical trial with rituxamib in the U.K. expecting that treatment would hopefully be available within a few years on the NHS. Better to know now and regroup.

Although there are other clinical trials taking place with another chemotherapy drug in Norway hope seems to have been pushed away into the far off future.

I have lost over a third of my adult life to ME and I had hoped to regain some of my 50s life even it was temporary remission … just a walk beside the river would be heavenly. Sadly I think I will be much older before there is any treatment.

There is real concern among the ME community for those in particular who are severely affected and coping on their own. So please if you know or hear of someone then please reach out to them as they need all the support they can give.

I am determined to now focus on the excellent research and awareness snowball that is happening with ME. The film Unrest is raising people’s awareness of what life with ME really means. Jennifer Brea has done an amazing job of producing a raw, disturbing yet powerful film showing the challenges of life with ME not only for the person with ME but showing life for the families and friends.

So for now a bit of reflection and acceptance of the new no rituxamib reality. I always am thankful for the 40 years of health and achievement that I had which is far more than thousands of children and young people get with ME. Plus the sun is coming out on a chilly but bright autumn day. Refocus and move forward, one small step at a time.