With the excitement and attention around the theatrical premiere of ‘Unrest’ in NYC this month now is the time to take ME advocacy and activism to a new level in New York. Over the past year there has been increasing progress at the state level. Last fall a #MillionsMissing protest was held in front of
UPDATE On 20th September, NICE overturned the original proposal and announced it would review its guideline on ME. This is great news but means we need to double our efforts to make sure that the new guideline is robust enough to protect and help people with ME for generations to come. We still need you
Last week, the House Appropriations Subcommittee on Labor-HHS zeroed out the $5.4 million line item for Chronic Fatigue Syndrome at the CDC….again. Tell your members of congress to restore the funding for ME/CFS for next year’s budget. We cannot abandon the progress we’ve made so far!
Trifecta in Knoxville, Tennessee In an example of Knoxville leading the way for Tennessee, Mayor Madeline Rogero and the Knoxville City Council have provided an ME/CFS Proclamation and Resolution in honor of May 12th, International ME/CFS Awareness Day. Supporting the global movement of lighting bridges and buildings in the ME blue awareness color, Knoxville’s Henley
A person with ME for more than 38 years wrote this pointed letter to the National Institute of Health, calling its leaders to act with urgency and correct their gross neglect of people suffering with ME.
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.
Friday Letters to Francis Collins
Momentum continues from the #MillionsMissing campaign that was born last May. Activists took to the streets worldwide in 11 cities in May – and in 25 cities in September – to protest their government’s neglect of people with ME. While the posters are now stored away, activism has continued behind the scenes in follow-up
