I was reading some patient reactions to the P2P Draft report, and was surprised, along with others, that at first glance it seemed better than expected. But don’t be fooled.
Bottom line – the report is a carefully crafted political document that can be taken to mean whatever the government wants it to mean. There is plenty of room for the psychiatric lobby to have their way with us i.e. using CBT, GET and multimodal therapy for treatment, as if our disease was psychological and not a severe biomedical disease like MS.
Based on how our year-long online protests have changed the content of the report, making critical comments during the comment period is likely to bring about only incremental change at best.
I was starting to feel a little hopeless about all of this, when I remembered – we don’t have to accept any of this!
The National PR Campaign for ME, brought to you by MEadvocacy.org, is starting in January. We are taking our message about ME to the American people and policy makers in Washington with a six month sustained campaign. Our goal is to be in major newspapers, in important blogs, on radio, and on television, such as the national morning shows.
We deserve better than this P2P report. ME deserves to be recognized as it’s own distinct disease (separate from CFS), with a true ME definition that includes post exertional relapse as the hallmark symptom. We deserve federal research funding commensurate with similar diseases such as MS – a far cry from the measly $5 million “ME/CFS” is getting now.
We're fundraising as we go along; we're currently fundraising for February with a goal of an additional $5000 reached by mid January. Let's keep the momentum going! Please donate!
To learn more about the National PR Campaign for ME, and donate, click here: https://meadvocacy.nationbuilder.com/donatepr