u/DefiantThroat

▲ 16 r/PMDD

What is it: IAPMD has been awarded a grant by PCORI.org. For project kick-off they have developed a survey to gather insights from those that have an MRAD, clinicians and researchers involved in developing and providing care for those who have an MRAD, and those who are caring for someone who has an MRAD.

Why: PCORI is an organization focused on patient centered outcomes research. They fund research that helps people make informed healthcare decisions and improves healthcare delivery & outcomes by producing research guided by patients, their caregivers, and the broader healthcare community. Instead of research based on a PI’s area of interest, they focus on what the lived-experience community is voicing needs to be researched and then direct researchers to go research that topic.

Who can participate: Anyone as long as you have some form of lived-experience with PMDD and/or PME. You can be anywhere in the world, no geographic limitations.

When: The survey is open now and they are eager to hear from folks from this community. You got opinions and experiences? They want to hear them.

How: The link will take you to the Ethic Board approved survey. I will say it is very detailed so give yourself a bit of time and focus to take it.

form.jotform.com
u/DefiantThroat — 7 days ago
▲ 108 r/PMDD

Hi all. I am super duper behind in getting the results of our annual survey out to the sub (I got a new job). The numbers haven't largely shifted year to year, which is a good thing.

Until then, I wanted to give you all at least a nugget of insight since many of you took the time to participate. This year, we asked a new question around differential diagnosis. I knew the result was going to be bad based on all of the 'you need to have a proper differential diagnosis in addition to tracking symptoms' comments that I and the other mods make, but I didn't expect it to be this bad.

What is the stat I am speaking of?

Of those diagnosed by a provider, only 22.7% had bloodwork done. Only 33% were required to provide prospective symptom tracking. Of the two, it's the bloodwork stat that really shocks me. The need for bloodwork isn't something the mods are pulling out of thin air based on wishful thinking. The DSM differential diagnosis criteria (last image) outlines it as part of the process, along with 2 conditions to check: thyroid and anemia.

I cannot emphasize this enough: There are many conditions that can look like PMDD. Most of them are a lot easier to treat. The American Society of Hematology (ASH) is expected to publish new clinical practice guidelines on anemia any day now. The new guidelines will set much higher ferritin targets for menstruating individuals and even higher targets for people with inflammatory conditions. We know a huge portion of those who live above a certain latitude and/or are POC are deficient in vitamin D. These are very simple, low-cost blood tests.

These are not self-diagnosed individuals. These are people who sat in a physician's office and were diagnosed. I'm just angry on behalf of a lot of you right now.

u/DefiantThroat — 9 days ago

“The medical equipment manufacturer asserted it saw no evidence of impact on products, manufacturing/distribution operations, financial reporting systems, patient safety, or ability to meet patient needs, as the networks supporting corporate IT operations are separate from other functions.”

MDT’s press release is pretty vague, but word is this is also Handala’s doing. I realize that breach attempts happen everyday, but seems like having 2 of the big 4 targeted in such a short window is not a popularity contest we want to win.

u/DefiantThroat — 15 days ago