We are down to the wire, friends. The #MillionsMissing protest is on the 27th, and we have millions upon millions missing from ME research at NIH. Specifically, NIH issued 15 RFAs last week for $62 million, but ME did not get a damn thing.
The end of the fiscal year is this Friday. Do not hold your breath.
- Total RFAs Issued by NIH: 343 (October 2015 to date)
- Total Dollars Committed to RFAs: $2,776,271,617 (October 2015 to date)
- Total RFAs for ME/CFS: ZERO (October 2015 to date)
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 9/19/16 | 15 | $62,636,000 | Zero |
| 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.
Dear Jennie,
Thanks so much for keeping up with this despite all that’s happening in your own life. We are all so very grateful to you for your continued effort. Please take care of yourself.
As far as I can tell NIH’s NINDS (National Institute of Neurological Disorders and Stroke), under whose umbrella we’ve resided since moving from HRSA’s Office on Women’s Health last year, still doesn’t list any version of our illness or its many previous acronyms IN ITS OWN INDEX OF DISEASES (though the OWH still shows a PDF fact sheet with more recent information [September of 2014] on its website than either the CDC or NINDS).* Perhaps we should again demand relatively inexpensive updates to our own government’s websites. They are ongoing sources of disinformation worldwide. I’m almost hoping my computer’s cookies are taking me to old sites that have been updated without my being able to find them.
*though its link the Trans-NIH ME/CFS Research Working Group goes nowhere.
The CDC hasn’t updated its website in forever. Doctors, patients and their families and every variety of care provider still see CBT and some version of GET on the CDC site. Now that the PACE study has been debunked (though not as yet retracted by “The Lancet”) it’s devastating to see new trials (on http://www.storkapp.me) starting – the newest with pediatric & adolescent patients – pushing for or still testing CBT & GET. Any new trials anywhere in the world should be halted as potentially dangerous to these most vulnerable patients. Gentle warm water exercises in the 1990s were what took me from Fibromyalgia to the full blown ME/CFS I have dealt with since.
Though the CDC softened its description of these ‘therapies’ somewhat in 2013, the Medical Specialists, Physical Therapists, Psychiatrists, Psychologists and LicSWs newly Dx’d patients are STILL sent to remain unaware that we are not dealing with faulty beliefs that we are ill and merely deconditioned. Education will start with appropriately updated government sites, funding for inclusion in any new textbooks written for every type of provider we may encounter, and the courses professionals are required to take to maintain their credentials.
Perhaps ’til then, the IOM’s MECFScliniciansguide.pdf might help with diagnosis and acceptance until an inexpensive, safe, relatively non-intrusive biomarker is found. The Guide should be broadly distributed to professional organizations in all fields we may encounter for distribution to all members. Email is free. The guide is a PDF.
This will still take a while. At minimum, viewings of Kim Snyder’s “I Remember Me” from 2000 and Ryan Prior’s “Forgotten Plague” could be included in curricula for every specialty. These have softened attitudes within my own family. My 34 year old son’s PCP, Rheumatologist and LicSW’s eyes still roll back when I suggest we find a specialist to have him diagnosed. The wonderful Dr. Komaroff hasn’t seen new patients in years, even for one-time consultation. We live in the Boston area, a medical Mecca, and I can find no one here for a simple consult. My PCP is great, we deal with individual symptoms as they arise, but she doesn’t accept new patients.
We have to fix this ongoing education disaster. It has been discussed at every CFSAC meeting I’ve ‘attended’ online or by phone. Every day we misinform another patient, family, doctor or other health provider is a missed opportunity for understanding and a new risk for the ongoing humiliation we face with each new provider we see.
Sorry for the long rant. It’s just disappointing to see the ticker unmoved. I should be resting for the #MillionsMissing Boston protest I pray I can attend this coming Tuesday (9/27/16). Very few of us were well enough to be at the one I actually made it to this past May. Payback had me in bed for a couple of months.
Be well Jennie, take care. We cherish you.
Great summary, Sura.
There isn’t ONE doctor in NJ I would go see for this – and I’ve had it almost 28 years.
There are expensive ones, not covered by insurance, who will test you and treat you for symptoms (one of the member of our RL CFS groups went until she ran out of money). And only a couple of those.
I sort of manage on my own, but it is infuriating. If I could afford to get angry!
You’re right – at least we could stop the misinformation.
Thanks for your continued patience with the nonsense.
It makes my stomach hurt that none of MY tax dollars are helping me or people like me.
They see us as expensive frauds, instead of hugely educated people with potential just waiting to get back to work.
“Every time you touch her
Sets your hands on fire
And everything you’ve got
Is all that she requires
And you hang on, hang on, hang on
To the words of a liar
You can feel it’s getting
down to the wire.”
— Neil Young