Are you prepared for an 18% reduction in ME spending?
I’m not. For one thing, the first year of funding for the new Collaborative Research Centers is set aside in this year’s budget. But all bets are off going forward. Like many other RFAs, the one for ME Centers explicitly states, “Future year amounts will depend on annual appropriations.” So it is possible that future years of funding could be cut or eliminated.
An Australian university is trialling a program to train health professionals in administering graded exercise therapy and cognitive behavioural therapy to roll it out nationally and internationally, despite the evidence of harm. Here is the response to a petition to ask them to stop.
The 2011 PACE trial examined the effect of graded exercise therapy and cognitive behavioural therapy against standard medical care, but refused to share their data.
West Australian Alem Matthees filed a UK Freedom of Information Act. The ruling released the data and further examination found glaring problems with the study.
An American with ME had strong words for the National Institute of Health (NIH): You have stolen 40 years of my life. Johanna Kaiser gave a brave testimony about the neglect of people with ME during the February 1, 2017 phone meeting with the NIH in which institute leaders answered questions about the planned ME research
Bird-dog: (verb) search out or pursue with dogged determination. Contact with elected officials at town hall meetings cannot be overvalued. Handfuls of bird-doggers attend meetings around the country and change the course of history everyday. Never heard of bird-dogging? Bird-dogging is a strategy used by activists who seek out elected officials, pin them down with
A member of the Shaw family reads their testimony during the comment period at the January CFSAC meeting: Good afternoon. I have had untreated ME/CFS for 38 years. Our testimony today is on the topic of the Center for Diseases Control’s (CDC) CFS group. The 2015 National Academy of Medicine report characterizes post-exertional malaise, or
Chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) have a long, long way to go before they get the attention and resources they deserve. It would take a heroic leap to quickly achieve what people with these diseases deserve and what the diseases themselves – given their economic costs / burdens they impose – should receive. So much needs to be done (funding, doctor education, drugs, other treatments) – and we’re coming from such a low place – that it seems almost impossible that it can be done in a reasonable amount of time. In fact, people do the impossible – make what seems at first to be inconceivable differences in one area or another – all the time. This blog is about a man who did that, and did so in a way that may directly help those with chronic fatigue syndrome (ME/CFS) and fibromyalgia.
Thank you for this opportunity to address the CFS Advisory Committee. I am writing to in response to the call for comments regarding how the US government might engage members of the ME/CFS community, especially patients and their lay supporters, in addressing and solving the clinical, research, educational, and public health challenges of this condition.
2016 was a big year for ME/CFS advocacy. As we turn over the page to the fresh new year, the #MEAction Network Australia group reflects on some of the highlights of its advocacy efforts in 2016.
We’re excited to announce the winners of the #MillionsMissing Art competition. 1st prize went to CJ Janzen from Cambridge, Ontario who made two amazing songs about ME. Listen here: Myalgic Encephalomyelitis Song – Rough by CJ Janzen | Free Listening on SoundCloud A Song For M.E. by CJ Janzen | Free Listening on SoundCloud 2nd
