Imagine a woman waiting for a train. She has been waiting a long time, and the train is the only way to get to her destination. She waits as many other passengers get on their trains and proceed down the line. She waits with some impatience. She checks her watch, and checks with a ticket agent. She waits. She gets angry and raises hell with a conductor. Every other train is coming in, taking on passengers, and going out. Just wait, the conductor says. Your train is very very important to us. She waits, alone and with nowhere else to go.
- Total RFAs Issued by NIH: 328 (October 2015 to date)
- Total Dollars Committed to RFAs: $2,713,635,617 (October 2015 to date)
- Total RFAs for ME/CFS: ZERO (October 2015 to date)
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 9/12/16 | 7 | $31,150,000 | Zero |
| 9/5/16 | 3 | $6,250,000 | Zero |
| 8/29/16 | 8 | $11,250,000 | Zero |
| 8/22/16 | 5 | $14,300,000 | Zero |
| 8/15/16 | 16 | $130,685,000 | Zero |
| 8/8/16 | 13 | $137,053,000 | Zero |
| 8/1/16 | 9 | $30,900,000 | Zero |
| 7/25/16 | 5 | $128,556,617 | Zero |
| 7/18/16 | 3 | $17,950,000 | Zero |
| 7/11/16 | 10 | $75,855,000 | Zero |
| 7/4/16 | 0 | $0 | Zero |
| 6/27/16 | 3 | $12,971,000 | Zero |
| 6/20/16 | 1 | $2,000,000 | Zero |
| 6/13/16 | 5 | $21,475,000 | Zero |
| 6/6/16 | 5 | $7,100,000 | Zero |
| 5/30/16 | 4 | $6,900,000 | Zero |
| 5/23/16 | 8 | $42,400,000 | Zero |
| 5/16/16 | 2 | $7,800,000 | Zero |
| 5/9/16 | 11 | $32,100,000 | Zero |
| 5/2/16 | 8 | $32,485,000 | Zero |
| 4/25/16 | 4 | $7,500,000 | Zero |
| 4/18/16 | 10 | $42,230,000 | Zero |
| 4/18/16 | 10 | $42,230,000 | Zero |
| 4/11/16 | 4 | $6,825,000 | Zero |
| 4/4/16 | 8 | $27,000,000 | Zero |
| 3/28/16 | 13 | $161,000,000 | Zero |
| 3/21/16 | 1 | $2,700,000 | Zero |
| 3/14/16 | 5 | $23,650,000 | Zero |
| 3/7/16 | 9 | $82,710,000 | Zero |
| 2/29/16 | 1 | $1,890,000 | Zero |
| 2/22/16 | 9 | $30,100,000 | Zero |
| 2/15/16 | 4 | $26,500,000 | Zero |
| 2/8/16 | 5 | $9,500,000 | Zero |
| 2/1/16 | 8 | $26,000,000 | Zero |
| 1/25/16 | 4 | $9,300,000 | Zero |
| 1/18/16 | 2 | $4,500,000 | Zero |
| 1/11/16 | 10 | $71,200,000 | Zero |
| 1/4/16 | 0 | $0 | Zero |
| 12/28/15 | 0 | $0 | Zero |
| 12/21/15 | 3 | $10,260,000 | Zero |
| 12/18/15 | 5 | $20,260,000 | Zero |
| 12/11/15 | 27 | $765,090,000 | Zero |
| 12/4/15 | 6 | $26,600,000 | Zero |
| 11/27/15 | 4 | $21,000,000 | Zero |
| 11/20/15 | 15 | $134,400,000 | Zero |
| 11/13/15 | 2 | $16,100,000 | Zero |
| 11/6/15 | 10 | $22,850,000 | Zero |
| 10/30/15 | 7 | $49,800,000 | Zero |
| 10/23/15 | 10 | $33,200,000 | Zero |
| 10/16/15 | 0 | $0 | Zero |
| 10/9/15 | 13 | $332,450,000 | Zero |
If you want more background on the RFA Ticker, read the inaugural post.
The fact that you are still finding engaging ways of doing this is remarkable. The fact that we are all still waiting is deplorable.
http://www.atlasobscura.com/places/great-train-graveyard
Abandoned trains. Old abandoned steam engine trains in USA. Abandoned steam locomotives: https://www.youtube.com/watch?v=BKQYrrJVg6g
I think these abandoned trains represent the misunderstanding surrounding ME, government policy toward ME, as well as what has become of some of us.
These images also remind me how much I miss my cameras and dark room, the places I can’t go to and how much the world has changed and gone on without me.
If appropriate state of the art and futuristic trains ever do come for us, they need to make stops at our homes too because some of us can’t make it to the stations.
And now imagine that that train is your life. You are waiting for the rest of your life to arrive. And, as of mid-November 2016, you have been waiting for 27 years.
Hey, me too. 27 years. 28 in November.
Picked up SOMETHING in Anaheim, California, where I was at a physics conference, and they happened to be spraying for medflies – and it never went away.
I’ve even written a novel about it.
And people (have the gall to) wonder why patients struggle to have patience with this interminable waiting.
You are so right: there is no place to go.
We get on with our lives, but we’re living at the train station.
Thank you so much for the work you’ve done. There are days that your posts have helped me keep my sanity and other days when you have given me hope. Thank you, thank you, thank you.
Thank you, Kellie! I’m so glad the blog is helping you.
I don’t post comments very often but thank you, Jennie, for continuing to follow this issue. I’m sure there are many more ME patients like myself who read this blog but rarely have the extra energy to post a comment.
Thank you!!!
What makes sitting on this bench tolerable is that I know you are sitting next to me. You may never know how many of us are with you, most of us don’t write much. I imagine our bench as miles long and that we’re all here with you. We may be invisible, but please know that we are here and we that we read and re-read every word you write. It’s so much easier to wait with a friend. On good days I can almost hear our train on its way.
Sura, thank you so much. Your beautiful words are a comfort to me. There have been times when I felt very alone, and it takes a great deal of strength to carry on (and wait). You are absolutely correct that it is easier to wait with a friend. Thank you for sharing the bench with me!
Thank you for the update, as deplorable at is the information.
For me, it’ll be 31 years in November. And I can’t even get to the train station.
So I”m waiting in my humble abode.
What with the new UCSD study about metabolism and ME/CFS sufferers’ metabolites being abnormal, causing a situation like “hibernation,” and the tribunal’s order to Queen Mary University to release all the information on the PACE study, one would think this would rouse NIH to do something!
What will it take?
I’m glad we have you to advocate for us, Jennie.
Hi again Jennie,
Just thought I should let you know I found this in today’s “STAT: Morning Rounds” https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial but also found a pilot adolescent study in today’s http://www.storkapp.me http://www.storkapp.me/paper/showPaper.php?id=17397372 where I couldn’t tell which clinical definition had been used for patient inclusion because retrieval of same requires $41 I can’t spare. Clearly, many researchers are still using the outdated Oxford criteria and PACE ‘results’ in new research as the authors and trial are listed in their final published bibliographies – I see this every day using that storkapp.
You and others who’ve been as sick or worse than the rest of us have done and are doing all you/they can: Kim Snyder’s “I remember ME” from 2000 (available on YouTube and free w/Amazon Prime), Laura Hillenbrand’s 2003 article “A Sudden Illness” in the ‘New Yorker’ issue of July 7, 2003 (which may be available only w/subscription), Ryan Prior’s “Forgotten Plague” (free w/Amazon Prime and possibly elsewhere), Alicia Butcher Ehrhardt’s book “Pride’s Children” Trilogy (1 down, 2 to go) with a main character dealing with a version of ME/CFS about 20 years behind where mine has progressed, and the recently vindicated Alem Matthees’ FOI request (what’s the opposite of ‘vexatious’?) have been instrumental in informing some of our skeptical families and friends. Your weekly updates make it clear that more action is needed – and that YOU are watching closely.
We who are too ill to adequately pursue this can’t continue to be our main advocates. We are relieved to find ‘fellow travelers’ in better shape than we who can do more than merely wait with us (though it’s comforting to feel them here). Ron Davis and all the other doctors who have stayed with us (though there are few local doctors who specialize in treating us, even in the medical Mecca of Boston, where I live – Dr. Komaroff hasn’t been able to accept new patients for years and hasn’t ever responded to my plea for a referral for consultation for my 34 year old son), David Tuller (and Vincent Racaniello who published David’s questions about the PACE study in his Virology Blog) have fed this trend. We can only hope that better funded research and adequate education of providers will follow.
That’s it for me for today.