Maureen Hanson, PhD, and I wrote an op-ed for The Hill, a Washington, D.C. news publication. We emphasized the seriousness of ME and asked for meaningful Congressional funding. The Hill reaches 32 million people per month online, 19 million of them college educated, according to its media kit.
Our op-ed appeared this afternoon, April 23.
Hanson directs Cornell University’s Center for Enervating Neuroimmune Disease and is Liberty Hyde Bailey Professor in the Department of Molecular Biology & Genetics at Cornell. She is a member of the National Academy of Science and the American Academy of Arts and Sciences.
Such an important article! Thank you to both of you!
I'm 54 years down the line with ME and therefore I have been ill more than half a century longer than anyone who has Long Covid. I have thus far had no care specific to my disease. And yet I am looking at the 'euthanasia' 'option' simply because some very severe symptoms are timing me out. Hobson's choice (unless we can regard a possible 30 years of unbearable suffering a 'choice').
I'm still fighting knowing what the first line treatment option ought to be, given my (privately obtained) test results. But it's proving as elusive as will-o'-the-wisp.
But I'm no longer keeping such thoughts to my private social media and private conversations. People should know what is happening to those of us with ME.. actually happening.. and, as you say, the population generally simply doesn't realise that they are only one viral infection away from a life torn apart too. And we can thank many western governments for this inequity, particularly those of the US and the UK. The malign influence of Holmes and Kaplan and the CDC; the fakery of Beard and McEvedy, and the Wessley School (who get their rocks off gaslighting seriously ill people) in the UK.
People with ME are overdue for care, most of us will go to our graves without it. Unless things change. As scandals go, and we have seen plenty over the span of the last 54 years of my illness, this surely is the biggest of all?
Great article and many thanks to you Hillary and Maureen for once again being our voice. One item I would like to add to the pleas for help in the future is the following: At least in my case, there is immune deficiency along with the chronic fatigue. In my mind the immune deficiency part of this illness is huge as the immune system can affect every aspect of our health. Dr. Paul Cheney and virologist Elaine DeFreitas recognized that this illness was similar to what was being seen in other HIV/AIDs patients. This should have been a show stopper. Because this disease is so easily transmissible, my guess is that they don't want to panic the public. Please continue to be our voice and please bring up the reality that this is an immune destroying illness. The public has a right to know.