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|
If you want more background on the RFA Ticker, read the inaugural post.