Addendum

The organizers of the Invest in ME conference, one of the best scientific gatherings in the world, held annually in London, have some observations...

A correction: Helen Morgan, who wrote the editorial in The Times that I referenced in my recent piece, is a Liberal Democrat MP from North Shropshire, not a journalist.

Also, I’m adding a link (below) from the charity Invest in ME for any who might be interested.

Invest in ME has hosted an international scientific conference on ME every year since 2006, bringing researchers from all over to London for several days of meetings in May. Beginning in 2011, Invest in ME began advocating for a Centre of Excellence for ME. In spite of meager resources, they facilitated and funded the only Center, so far, in Norwich Research Park.

The charity sought participation in the formulation of the new ME plan to be released soon. Its staff was alarmed at the slow pace of the creation of the plan, and warned early on that by the time the plan was ready, a new government would be in power, one that would be unlikely to fund ME research.

Invest in ME ultimately had several complaints about the creative process and contents of the plan. For people who are curious about advocacy or activism in the UK, Invest in ME kept a journal of sorts—a description of its involvement with the plan as it evolved. I submit it here for those who might be interested in the process as interpreted by one charity.