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

Samuel Wales, who has had ME for many years, has kindly allowed us to republish his latest blog post, which can be found here.

My previous post contains my open letter to Francis Collins. It got a lot of readers. Many were from NIH. But who exactly at NIH is listening?
I was hoping that Francis would reply.
My ignorance

I do not know what constrains Francis. For this I defer to a diversity of those who know more. I am grateful for all progress. There are good people at NIH.
However, I do not know why m.e. has an insanely low level of urgency and priority.1
Congress will ask questions, and if NIH’s hands are tied (as NIH frequently avers) then Congress can help untie them. Why not talk to Congress now?

My request
I figured that Francis could tell Congress that a major disease is firing rounds up the tailpipe of the United States of America (and the world). Forgive my “Top Gun” language.
Congress isn’t composed of biologists, so it relies on this man to tell them what things need research.
I am just a peasant, however.
NIH reply
A spokesperson kindly replied on [2016-06-10 Fri]. They got facts wrong about me, my letter, and the point it made, but I don’t care. I’d rather NIH do biology.
They also praised themselves on Trans-NIH. I won’t comment. This goes over to the diversity of experts.
What I care about is a legal question.

NIH responded to my request with this rule:

NIH employees, as a part of the Executive Branch of the
Federal government, cannot lobby or advocate for any
particular cause or legislation.

Does this rule truly prevent Francis from telling Congress about m.e.?

What I want to know
What I want to know is:

  1. Francis Collins testifies frequently. Is m.e. off limits?
  2. Did NIH meaningfully reply?

I would have been happy to modify the wording. We seek science, not clever jousting, so it matters whether this rule is a sincere reply.


I was curious, so I asked a lawyer whether agency heads can tell Congress what things need scientific research.
I was told that Congress’s power to investigate is coextensive with its power to legislate. Translated into peasantese, this apparently means yes.
I’ll leave it to legal eagles to comment. But it would be strange if agency heads could not talk about their subject, so it sounds about right. Maybe it’s even their duty.

I am a peasant, but it seems to me that, at least if Congress asks Francis (perhaps at our request), he can tell them about the disease and the tailpipe thing.
And quite possibly he can do so in his regular testimony.

By the way, my letter said “CDC lobbied for Tuskegee syphilis experiment to be continued”. Perhaps that was before this rule? Was it part of Executive?

Previous testimony
I also did a quick search.
In the House Energy and Commerce Subcommittee on Health Roundtable Discussion on Health and Medicine Issues on September 10, 2014, Francis apparently said this (needs official confirmation):

And think about the difference that would make, had we in 2014 been in the position to distribute rapidly tens of thousands of doses, in collaboration with our colleagues at GSK, of this vaccine, how much different would this be and how many lives would have been saved.

I have no opinion on Glaxo’s product or this testimony.
But doesn’t it seem strange that Francis can’t tell Congress about m.e.?
(I am probably splattering my peasant confusion all over.)

NIH ethics site

At some point later, I went to the NIH ethics site. For health reasons, I did not spend much time on it.
There seemed to be a lot of language like this:

Direct executive branch communications to a federal, state, or local legislative body through proper official channels are permitted.
Lobbying and Publicity or Propaganda Guidelines

This is illustrative of what confuses me. Can Francis testify about m.e.?
Does it depend on whether he deems it significant? Does he, therefore, not deem it significant?

Suppose Ebola hit USA soil in large numbers without Congress knowing the seriousness of it, and NIH’s hands were tied (as they frequently aver).
Would he forgo telling Congress for fear of violating the rule?
Does the rule only apply to m.e. and related diseases? Does Moral Law also except m.e. and related diseases? What is required to make them non-exceptions? If we jump those hoops, will he testify as soon as possible?

I don’t want a focus group figuring out the right words to tell us. (That fits my peasant definition of propaganda.) I want science.

SPAME (Special Pleading Against M.E.)
A cookbook I read as a child gave an origin for the term “hush puppy”. If a dog needs food, and you are eating dinner, you can throw it one to it to make it quiet.
This describes my feeling about NIH policy.
We hear SPAME — Special Pleading Against M.E. M.e. and related diseases are treated as not deserving. And when we point out that they are urgent, we get thrown a hush puppy.

I don’t know the reason for this policy.

My take

There are good people at the NIH trying to do what they can. I want us to nurture our relationships with those people.
I’d like to be able to say the same of NIH leadership. Despite a lot of self-praise and a few actions, their results are not commensurate with the disease’s urgency and priority, or with NIH’s strengths and opportunities.
Perhaps employees will tell us what holds leadership back. By this, I don’t mean, “perhaps authorized personnel will convey more excuses and bureaucratic jargon” but rather, “perhaps NIH ordinary employees will tell us candidly about NIH leadership’s incentives, attitude, and policy”.4


We need you, Francis.


I never found the rule.


I also do not know why the NIH trial was initially set up so offensively (comparison groups and justification for the woo group — why do parts of NIH not have a scientific worldview?, cohort, and personnel decisions — likewise), but I will concentrate on the present. Incidentally, I would include related diseases in this post, but don’t know enough.


I have no beef with the spokesperson who contacted me; she
performed the duties assigned to her according to policy.


4 thoughts on “NIH reply to my open letter (and a legal question from a peasant)”

  1. Thank you for writing and sharing the open letter. It obviously took time and precious energy. I know I sound like some conspiracy theorist but it’s clear that the federal government refuses to seriously acknowledge ME/CFS. This goes back to the early days with how poorly the CDC responded to the ‘breakout’ at Incline Village. I was guardedly hopeful after the Institute of Medicine published their report and strong recommendations in 2016 I think it was, calling for research, education and especially a name change (though I didn’t much like their suggestion). They were chartered by the NIH, CDC, Social Security Administration and several other agencies to study this disease and make recommendations. And how have they responded? A slight, a meager bump up in NIH funding for research. But otherwise they’re silent. They’ve ignored it. I just don’t understand. (Someone please correct me if more has been done.) We need to be able to apply the pressure, be a strong unified community like with what happened with the HIV/AIDS crisis. But who has got the energy and ability? We are so seriously debilitated. So thank you for effort and for being proactive by writing this letter.

    1. Maschelle Mashburn

      see that’s the problem the squeaky wheel gets the grease and we’re all too debilitated and Ill to squeak loud enough to be noticed. If we can rise up in the streets like people did for AIDS and breast cancer awareness and March around wearing some kind of a symbolic form of clothing that with you in the fire cause whenever someone sees this article of clothing a color or a pattern anyting
      note to whoever programs Android speech to text. Your app keeps spelling anything incorrectly. Thank you.
      I think the problem is is wearing Isabel no we are not wearing Isabel we are invisible.
      Thank you speech to text for getting that correct after only one extra attempt on my part.
      I really don’t know what to say about our government and how it regards our illness. Heck we even got the attention of everybody’s pet President Barack Obama who said something must be done about this terrible disease. And then he smiled and waved for his fans. But somehow nothing happened for us.
      I went all-in with excitement for the Institute of medicine’s report! I was absolutely certain that finally are medical offices government whatever we’re getting tangible believable information from a reputable Institution! And then nothing happened. I was absolutely crestfallen and depressed and hurt on a personal level. Then when the NIH had these talks with smci I was so excited that they set up those studies! Oh yeah they’re doing something serious now! And now I see they were just throwing us what the writer of the letter reaches red described as a hush puppy. But I fell for it! how do I know when to believe them when do we take our eyes off of them and trust that they’ll behave when they’re out of our view? They are doing a really good job of acting like they care when they need to. As soon as they’re not under scrutiny they go back to the same old dirty tricks.
      It is indeed very confounding.

      1. i think #meaction is bringing new blood in and educating and organizing old blood. that will help reduce dirty tricks. our community is also bringing in many professionals.

        nih is definitely watching our activism closely. there is no question about that. the mystery to me is why they don’t act now, instead of after we [and congress etc.] force them. can somebody answer that one?

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