Science for ME is a major new ME/CFS internet forum with a focus on community, support, advocacy – and, at the heart of it all, science.
Patients with any chronic disease are at risk from quack therapies and poor-quality medical trials, but this applies especially to ME/CFS. Patients and carers therefore founded Science for ME as a place where open, scientific discussion of treatments, research, and theories would take centre stage, for the benefit of patients and scientists alike.
The forum is moderated to make it a safe and supportive space. Discussions range from friendly conversation, to matters of emotional support, to the latest advocacy action, to the practicalities of living with ME/CFS, to questions about treatment, and to the most recently published science.
We hope that scientists will join the forum as well as patients, and we are working on a programme of online Q&A sessions with researchers, to build on the success of our first such event.
The forum opened last October and has already attracted over 500 members, with over 25,000 messages on more than 1,400 threads.
Science for ME has a welcome section to help new members, which includes a statement of our core purpose and values, our rules and an etiquette guide. New members are very welcome, and we look forward to meeting you on the forum.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the