Interview with Walter Koroshetz (NIH/NINDS Director) & Zaher Nahle (Solve ME/CFS Initiative)

From: Llewellyn King

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Post Lyme disease? That label has fallen out of favor since it is commonly acknowledged to be a political distinction. So I assume Koroschetz is referring to post-treatment Lyme disease syndrome (also a political label, btw, just one more palatable since it isn't burdened with an overt assumption of a cured infection). I do not know why he states that there is no evidence of continued infection in PTLDS since there frequently is.

I don't know. If they cannot get a proven infectious disease like Lyme right - or at the very least be consistent and accurate with terminology and infectious characteristics - it doesn't leave me full of hope for ME/CFS. If they cannot divest themselves of the politics associated with a contentious disease like Bb, why would I imagine they can with ME/CFS?

And the whole fatigue obsession seems nothing short of ridiculous at this point, and at this level of NIH personnel.

 

Koroshetz says the problem why there is not much funding for ME/CFS is because there are very few applications coming in yet, NIH only accepted three of the 10 applications for the Research consortia. Why not issue RFAs for the ones that they rejected - since they decided to only fund three centers for research.

How is it that a researcher of Dr. Davis' status who was previously extensively funded for other areas - gets repeatedly rejected for ME/CFS funding?

And yes, @duncan it's still about a "fatigue" syndrome.

 

My sense is that Dr. Koroschetz just doesn't believe in ME/CFS as a package. He makes the point of it being a syndrome, and that there are many different subsets. Maybe he is correct, we all suspect that if we had every test available performed, a percentage of us would receive a pinpoint diagnosis. But, for now, we are grouped within the great unknown "ME/CFS." My problem is that here's a guy in a place of authority looking into a huge box of Legos of all different colors, and doesn't have the inclination to sort them. It was very interesting to learn more about the grant-funding process of the NIH. If you are a popular disease that is well established with productive research facilities, you're going to get funded. The popularity of a disease makes a difference, much more so than need. This is an endemic problem to the system in place. SMCI is a rogue outfit and I suggest people pay more attention to the work they are doing. They are very strategic and understand the hurdles. I am a wild fan of Carol Head, Zaher Nahle, and Emily Taylor...they are doing menial work looking at and striving for the big picture.

 

Probably just me, but this video is buffering really slowly and stops buffering altogether, eventually.

When I then tried to download it, the connection failed due to a "network error" after about 1 or 2 minutes. I hope it winds up on youtube. I don't seem to be having these problems there.

 

Thank you Dr. Nahle and Solve Me for your positive and “Smart” advocacy work and for promoting other researchers to come into the Me field.

Thank you Dr. Koroschetz. I know you are responsible for many diseases, but please we are desperate for treatments. We need your help.

 

When combined the ME and CFS labels might, if loose definitions are used, include even hundreds of different conditions, many of which are best thought of as misdiagnoses. Even strictly defined ME and CFS has some data indicating they are defining two different diseases with similar presentation. We just do not know for sure. Once we have one or more definitive diagnostic biomarkers we will be able to resolve this.

This is even without considering "comorbid" diagnoses such as EDS and post encephalitis.

 

Dr. Koroschetz replied to the pointed AIDs comparison with the retort that in his field there are many serious diseases without treatment - we are nothing special in the competitive field of medical funding he implies. Are those illnesses equally long time neglected and do they affect millions too? I'm not sure if that is just an easy shut down tbh. Even illnesses like Some forms of MS don't have treatments yet but they haven't spent the last 50 years not only without funding but utterly trashed and unsupported by the medical profession bringing untold additional suffering (e.g. Family breakdown) to patients. The fact that even well researched illnesses like MS and Parkinson's still have much to learn after 50 -60 years of investment makes me concerned at slow starts 50 years too late. if a few million a year can't solve the illness as it's too little, invest more Sir.

 

I had the exact same feelings when I heard him talk about the fact that many of the 400 diseases in his Institute don't receive appropriate funding.

The NIH doesn't even think of our disease enough to place it in one of the many NIH Institutes. We still linger in the Office of Women's Health (OWH).

 

Dr. Koroschetz made that point that research into other diseases will likely inform ME/CFS. Guess we should wait around when an accidental research epiphany for another disease solves our disease for us!

 

It's on Vimeo now. Not sure about Youtube.

 

Rituximab?

 

How many sick would it take for the NIH to truly take notice? 5 million? 10 million? 20 million? 50 million?

 

Unless we are contagious or unless we are in their faces it probably doesn't matter how many.

 

In this interview, Dr. Nahle references Dr. Francis Collins' statement that ME/CFS is one the "most challenging" of illnesses.

Dr. Collins quote:

One can't help but to feel somewhat conflicted in hearing the NIH Director call ME/CFS among the "most challenging" of illnesses. It is encouraging to hear ME/CFS recognized as such at such a high level, and yet it compounds the sense of dismay at having had the bad luck to have acquired a disease so challenging to medical preconceptions that the establishment has apparently long preferred to imagine that it does not exist.

One almost feels that being among "the most challenging" of illnesses should lend ME/CFS a certain cachet, but I'm reminded of an old anecdote:

 

Is there a way the community can get access to grants applied vs grants denied? If we have the number we cannot get BS anymore on they don't get enough applications.

 

I noticed he won't say "no" to the psychosomatic question, but rather "it's biological". This is also the response Wallitt had to the question and yet Shorter still somehow showed up at the NIH. It strikes me their is some mental gymnastics now that Wallitt believes he his finding the biologic component of conversion disorder or somatization (they exchange the two at convenience even though by definition they are wildly different). I hope that is not the case with Koroshetz.

 

Not sure that diseases belong to institutes. Grants are applied to the institutes the most closely matches the subject of the grant, and many diseases are funded by many different institutes.

 

Koroshetz stated that his institute (NINDS) covers about 400 diseases. ME/CFS used to be in the infectious disease institute. I'm not sure the year when it was moved out of an institute and placed into the Office of Women's Health.

 

I had that, so downloaded Vimeo, and it played much better through the app.