August 8th is Severe ME Day, observed on Sophia Mirza‘s birthday. Today we remember and honor the memory of all ME patients who have left us (and there are too many). We also raise awareness about severe ME, and the patients suffering right now.
What is severe ME? Patients cannot tolerate light and sound, so they must stay in darkened rooms. They may not be able to turn over in bed, or walk a few steps to the restroom. Severe ME patients frequently have gastroparesis or other GI problems that make it difficult to digest food. Touch may be painful. They need help with every activity of daily living. Severe ME patients frequently have trouble talking or communicating in any way.
There is no help for these patients. Families must shoulder the burden of care, and frequently cannot get palliative care services. The suffering just goes on and on, lives interrupted and dreams discarded.
It is very common for medical providers and others to look at an ME patient and say, “This can’t be ME (or ME/CFS or CFS).” If a person is that sick, the thinking goes, then it must be some other real disease. The lack of knowledge, and the lack of care, is appalling.
On Severe ME Day 2016, I can report that NIH issued more than $30 million in RFAs for diseases that are not ME last week. Despite the NINDS concept clearance, despite Dr. Collins’s promises to this community, another week has passed without the RFA we were told is coming. All of us, severe ME patients and those who advocate on their behalf, are waiting. Another week gone by.
- Total RFAs Issued by NIH: 276 (October 2015 to date)
- Total Dollars Committed to RFAs: $2,382,947,617 (October 2015 to date)
- Total RFAs for ME/CFS: ZERO (October 2015 to date)
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 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.
Someday you should post excerpts of these as a letter to the NIH. This sort of work may feel Sisyphean, but it’s important, vital work. Thank you.
It’s bad enough to have my severity; I can’t imagine what some of our sickest patients go through, and to have that complicated by the disbelief of the very medical ‘professionals’ who are supposed to help is an absolute scandal.
This is a scandal. Really!
Too tired today to write much, but thanks for doing all this work for us.
Was anything positive said last week in your meeting with Dr. DeSalvo about RFA’s – as in, might we expect some $ soon? I have no doubt you brought it up.
Nothing new to add.
Officials said they were forced to take “money away from cancer, diabetes, all those things.”
The U.S. Department of Health and Human Services has shifted $81 million in funds from other projects to continue work on developing vaccines to fight Zika in the absence of any funding from U.S. lawmakers.
In a letter addressed to Nancy Pelosi, a Democrat and minority leader of the U.S. House of Representatives, HHS Secretary Sylvia Burwell said she was allocating $34 million in funding to the National Institutes of Health and $47 million to the Biomedical Advanced Research and Development Authority (BARDA) to work on Zikavaccines. http://fortune.com/2016/08/12/zika-virus-funding/
One group of folks I think about are those with severe ME/CFS who don’t have any family members to look after them. What happens to them? Are they on anyone’s radar screen? In the worst case they have minimal savings left, no private disability insurance and must survive entirely on SSDI or SSI if they do not have enough work credits. Do they even have enough mental energy to run the gauntlet of applying for SSDI in the first place? Considering that many sufferers do not even receive a proper diagnosis, I suspect a lot of people are falling through the cracks.