Q&A: Avindra Nath, MD

Q&A: Avindra Nath, MD
Leading NIH study of post-infection chronic fatigue syndrom

https://www.medpagetoday.com/neurology/generalneurology/71257

 

I had been a bit confused by their decision to make use of this as a control group, but this answer makes sense.

 

There are hundreds of diseases/infections. Hundreds.

Out of this rich pool of infectious diseases from which to pick, they just happen to pick the one disease that arguably is more disputed,more contentious than ME/CFS?

"Convenient" does not do it justice.

 

It's funny (not really) how some scientists can be funded without a hypothesis but others can't.

 

It seems like the NIH is actually taking ME/CFS seriously. They are starting small, but trying to dig deep. Nath makes the point that "fatigue" in the vernacular may not describe what ME/CFS patients experience and always couples fatigue with malaise, which we all know is distinct. He also keeps the door open for additional research. This study is trying to build a base from which the NIH can build future studies.

His comments plow holes into prior research if one recognizes how he details the difficulty in defining an appropriate study group. This is exactly what patients have been asking for, stringent criteria with patients that are well characterized.

 

Nath sounds like he really has learned from listening to patients - I get a sense that he takes ME/CFS seriously now...

 

You have to wonder after all is said and done, whether there will be anything conclusive to report other than what we already know. Will they develop a hypothesis that leads in the direction of Dr. Montoya's work? Will there be a hypothesis that points to an entirely new theory? So much is being studied in these individuals, the data may take years of analysis. Only time will tell.

 

What we have here are 50 shades of fatigue. And no, this would not make a good movie.

 

Well you gotta start somewhere, the NIH clearly does not accept anybody else's research on the subject.

 

There was another interview with him (maybe it was a CDC call?). He discussed how long it has taken to run the patients. I believe they are running one patient every two weeks. It is going to be a long time before we have final results, although he did state that if something major comes up they would likely release that early.

 

Yes, I wish they'd explained their use of Lyme as a control right at the beginning.

 

For good reason, eh? Sounds like Nath learned about PACE and how crap the BPS literature is.

 

Let's hope for some early results, else we are in it for the long haul.

 

I came away from this interview with an uneasy feeling. The lead investigator seems centered on - yet again - fatigue. Moreover, the other ME/CFS feature that appeared to have his attention is malaise?

So what he, in part, tries to impart to the interviewer, the specific sequelae of pwME that one of the worlds greatest medical agencies - the NIH - is apparently honing in on, are that these ME/CFS patients are tired like few others, and they have an unwell feeling.

This is, at least in good measure, his focus?

Shouldn't it be PEM, that unique and distinguishing symptom which is NOT malaise, but a dramatic and debilitating worsening of symptoms, either individually or collectively, following exertion, that can last from hours to days to weeks?

Shouldn't it emphasize that ME/CFS refers to a cluster of symptoms that can include profound cognitive decline and pain and exhaustion and...

What does he focus on largely? The old dismissively pedestrian millstones devised in the US along with the CFS label 30 years ago: fatigue and malaise.

 

Maybe in his next slides his team will no longer be called "Team Tired" but "Team Malaise"?

He seems to have understood that patients want to see the term "fatigue" replaced by "malaise" while forgetting the most important part: "post-exertional". Anyone who has really assimilated how this disease manifests itself will never ever leave that part out in any talk or interview. Let's say it's just a detail.

Also:

"And we may understand some things about the the fundamental aspects of fatigue and malaise that would be helpful beyond this disease itself, for example in cancer and in multiple sclerosis"

Selling the idea that understanding the pathophysiology of ME can be helpful in other areas of medical science is fine (I'm not sure though we would ever hear the reverse: "we are studying MS and cancer fatigue as it might also be helpful to understand better ME/CFS…) but I can't help but wonder whether this is the real order of what fundamentally interests the NIH here: 1- getting at the heart of fatigue physiology in general, 2- by studying ME/CFS.

 

I still want to know who wanted the functional (psychosomatic) control group, and why it was initially included.

 

I am not sure they have really explained it in this interview. You can plug in just about any virus or infection where he uses "Lyme", and come up with a post-viral fatigue type syndrome.

It also is not clear that these ex-Lyme patients won't eventually come down with sequelae; many who contract Lyme and see their infection progress to late stage report a relapsing remitting course, ie, they have acute Lyme, they treat it - or not - and it seems to resolve, only to have symptoms roar back at a later date.

As for a study about Lyme ongoing - sure, there are usually a bunch of studies about Lyme. Not sure about their voracity, though. I would be curious as to which particular study he was referencing.

So again, I have to wonder: Why a Lyme control group?

 

You're right - it would also make far more sense to use an infection which is commonly accepted as a trigger for ME/CFS. EBV is one, but that would basically equate to a standard healthy control. In fact, why not just use standard healthy controls in general, if the purpose is to compare us with people who have had infections and didn't get permanently ill afterward? Everyone has had infections, after all ... no need to confine it to a specific one, especially one as controversial as Lyme.