What had looked to be a promising line of research that could lead to an effective treatment for a subgroup of patients defined by the Canadian Criteria and major understanding of the pathology of this disease has proven to be inconclusive.
Naturally, at the charity, everyone is disappointed. We are disappointed for all the ME patients and carers and families and friends.
We are especially disappointed for all of our supporters and all who have made such generous and tireless efforts to raise funds and awareness of our campaign.
We are very disappointed also for the Haukeland research team - a wonderful team who have brought hope to all patients - and, importantly, brought new insight into this disease and new interest from other areas.
However, we have found, throughout 12 years of trying to change the way that ME is perceived, researched and treated that it is never easy.
It would be easy to give up, to resign oneself to nothing changing, to accept the status quo.
But we think differently.
At the 2017 Colloquium/Conference we invited Karolinska Institutet in Stockholm to present negative results. Because it is important to use negative results for positive effects. Negative results are data and the Norwegian rituximab trial has generated a lot of data that needs to be looked at very carefully.
When we first engaged Professor Jonathan Edwards into research into ME one of the earliest comments he made was that he was pleased to note that our conference did contain negative results.
We see the positives in this research which has been performed by researchers of the utmost integrity who have not made headlines for the sake of it but have thoroughly conducted outstanding research, and still retained a humility that is to their credit and that of their colleagues and team.
We have an excellent research team in Norway which has served the ME patient community and their families with honesty, integrity, professionalism, determination and an empathy which had never been seen before in this field.
We have established good working relationships between the Norwegian researchers and the UK Centre with input from UCL and UEA/Quadram Institute.
We have data now – more than before.
We have research which IiMER has established and a foundation for the Centre of Excellence for ME.
We have international collaboration in research into ME that will continue.
And we have new plans – already in the making.
The researchers from Haukeland will give more detail on their results and publish a paper or two which will benefit all studying ME.
For us, we have invited the Haukeland team to Norwich to discuss the way forward.
We remain positive. Another setback, another day.
We have already been in discussion with our advisors and with the Norwegian team and we will meet to clarify the best way forward in the near future with our major funder and researchers.
We still have much good research being funded and being planned and feel our stategy is, and will pay off and lead to the most rapid route to finding cause(s) of ME and effective treatments.
In another age, and in another struggle which has some parallels to that which is forced upon people with ME, these words strike a chord -
“ We must accept finite disappointment, but never lose infinite hope. ”
- Dr Martin Luther King