NIH reply to my open letter (and a legal question from a peasant)

Update on the status of this back and forth with NIH

As of [2019-10-31 Thu] I have still not updated you with the third round of NIH emails (this being the second round; please see my open letter to Francis Collins). I am not sure it is worth it.

The TLDR is that, roughly speaking, yes, as expected, of course Francis can testify.

Open letter to Francis Collins, director of NIH, concerning myalgic encephalomyelitis

Dear Francis Collins:

The following happened since I got sick, without the NIH funding myalgic encephalomyelitis (m.e.) as a global crisis:

Comments on FDA workshop draft agenda (harmful lifestyle/symptom drugs instead of critically needed fundamental pathophysiology drugs)

This is not my written testimony. That is here.

This post contains my predictions, which I posted elsewhere before the meeting, based on their misplaced focus on symptoms.

UPDATE: the FDA's "Meeting Summary", April 26, 2014, makes it clear that all of the concerns in this post have been borne out. The FDA is not serious.

FDA written testimony (selection bias)

Three damaging myths about severity levels that trip up almost everybody

Here are three myths about severity levels.

Even some of the best scientists, journalists, and advocates get tripped up by them.

An objective severity scale for sufferers of multisystem neuroimmune diseases

This post introduces an objective severity scale for applicable multisystem neuroimmune diseases.

Why are we allowing early-stage sufferers to die?

Emily's disease started out mildly. Emily died at age 30.

Here is Emily telling us her story:

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. … This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it.
— Emily Collingridge

There is still no research into its most severe form. There is still no support.

However, the key points for this article are these:

Emily's disease started out mildly. Emily died at age 30.

The FAQ that should never be necessary

Characterization and the unaware early-stage sufferer

Here is an experiment using Google.

Letter: transmissibility

Dear The Kafka Pandemic:

You asked about transmissibility. This is complicated and we don't think the general public will understand it.

More you than you

Are sufferers just like you the right ones to study? Not always.

I will tell you a story.

Three things people don't know

Here are three things people don't know about the pandemic:

Letter: treatments

Dear The Kafka Pandemic:

You asked about treatments for your predicament (or "pandemic disease" in your adorable wording).

A quick note on the ICC (International Consensus Criteria)

For newcomers: disease definitions are critical. This post will not illuminate the general issues, but others will.

Severity

An experienced physician described the disease like this.

Would you say that about AIDS?

It often seems that the Kafka Pandemic is a lesson in social psychology that 100 doctorates stacked on top of one another could never match. When you experience it, your view of human reasoning and behavior is forever changed.