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Extraordinary NIH ME/CFS study may be most comprehensive & in-depth yet

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
My #MEAction blog on the many good points of the planned NIH ME/CFS study
Extraordinary NIH ME/CFS study may be most comprehensive and in-depth ever | #MEAction

There are still concerns, but also some deeply impressive science that could make a big difference to patients.

Brief version
Blink and you’d missed it. In just six minutes and six slides, Dr Avindra Nath unveiled one of the most in-depth, comprehensive and innovative ME/CFS studies ever proposed: it’s the first fruit of Director Dr Francis Collins’s ‘new start’ for ME/CFS at the US National Institutes of Health (NIH). There wasn’t a lot of detail, but even from the preliminary information that’s available it’s clear that we’re looking at a very impressive project.

Since it was first announced, concerns about the study—including the selection criteria, the choice of control groups and the views of some of the researchers on the team—have dominated discussion in the ME/CFS community...

...But looking closely at what we know so far about what the NIH is planning, it’s clear that it’s applying some extraordinary science to the problem of ME/CFS,

...Study highlights
  • The study will take an astonishingly in-depth look at the immune system, both via the blood and spinal fluid. On the basis of the initial findings, the NIH will decide where to target even more sophisticated tests.
  • The researchers will use a wide range of measures: thinking tests, metabolic tests that even measure how much energy patients burn as they sleep, autonomic function tests, and self-reported fatigue alongside activity measurement.
  • Best of all, the study will look at how most of these measures are changed by exercise, focusing on the core feature of ME/CFS.
  • And they will use two types of technology to probe what happens in the brain when patients are hit by exercise.
  • The most ambitious part of the study will use cutting-edge technology to try to reproduce in the laboratory the clinical or biological abnormalities seen in patients. It could dramatically speed up understanding of the illness and the development of treatments.
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
This is a terrific article and I highly recommend people read it!

For all the concerns about the potential for the study to have psychogenic aspects - and I share those concerns - it looks very impressive overall.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
A big thing that makes me optimistic is that Nath expressly says that the end goal is immunomodulatory agents.

I'm very, very excited about this study but I'd be happier if I could be very, very excited without that added edge of fear that the psychogenic bolt-on engenders.

The sooner that all that stuff gets scraped off, the better.
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
An interesting and optimistic review Simon (and I'm all for optimism).

What was new for me was the whole body energy measurement which I've long thought should show up any problem with energy metabolism.

All in all it strikes me (small population aside) as a well considered study.
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
What was new for me was the whole body energy measurement which I've long thought should show up any problem with energy metabolism.
I think it will be particularly interesting when they look at what happens after exercise.

Btw, to measure energy when people are resting, they put them in a sealed room - like this
SA’s open-source ‘metabolic chamber’ | TechCentral

Sealed means everything in and out tracked - food in, food waste products out as well as oxygen consumed and carbon dioxide released, water etc. Don't know how much of this the NIH will be doing in this study
 
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Messages
15,786
Anyone who claims the FMD group is "well-defined" and "clearly psychological" has no idea what they are talking about, or they are completely full of it. These are useless control groups designed to cause confusion and reduce the statistical power of the study to help create a null result. Hopefully those who are running the study will rectify the situation.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
http://www.meaction.net/2016/03/03/...-may-be-most-comprehensive-and-in-depth-ever/

Courtney Miller said:
“Functional Movement Disorder patients were chosen to contrast post-infectious ME/CFS patients with a very well-studied group of patients with clear psychological illness with neurological presentation. Dr. Nath explained that there is clear brain imaging on patients with FMD which shows where the brain signals stop between intent to move and muscle control. Contrasting that with brain imaging pre- and post exercise challenge could be illuminating. ”

I still don't see the relevance.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Courtney Miller said:
“Functional Movement Disorder patients were chosen to contrast post-infectious ME/CFS patients with a very well-studied group of patients with clear psychological illness with neurological presentation. Dr. Nath explained that there is clear brain imaging on patients with FMD which shows where the brain signals stop between intent to move and muscle control. Contrasting that with brain imaging pre- and post exercise challenge could be illuminating. ”
Their thoughts about FMD seem contradictory to me. On the one hand they're clearly saying that it's a psychological disorder but on the other hand they're saying that the brain scans show that the patient is intending to exert muscle control but failing to exert control, which suggests its not psychological, but neurological. Perhaps I've misunderstood, but everything they say about somatoform disorders seems to be contradictory. I've no idea what they're talking about when they say: "Contrasting that with brain imaging pre- and post exercise challenge could be illuminating."
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
The FMD label is baseless. Just as ME as psychological illness is baseless. Both labels are harmful.

I kind of feel complicit in the harming of so-called FMD patients - who in all likelihood have a neurological illness - if they are controls.

A question:
Is in acquiescing to their inclusion (and unwarranted psychologizing of their physical symptoms) as a control group a sort of a tacit agreement that 'those' people have a psych problem?
 
Messages
13,774
Their thoughts about FMD seem contradictory to me. On the one hand they're clearly saying that it's a psychological disorder but on the other hand they're saying that the brain scans show that the patient is intending to exert muscle control but failing to exert control, which suggests its not psychological, but neurological. Perhaps I've misunderstood, but everything they say about somatoform disorders seems to be contradictory. I've no idea what they're talking about when they say: "Contrasting that with brain imaging pre- and post exercise challenge could be illuminating."

It depends what is meant by 'psychological' though. People with depression can't just choose to switch it off. Part of the problem is that people seem to use 'psychological' to mean all sorts of things.

With some Functional Movement Disorders aren't there test which are meant to show that people's paralysis is driven by their expectations? I don't know how good they are, and I've also seen criticism of them too.

https://en.wikipedia.org/wiki/Hoover's_sign_(leg_paresis)

I don't know enough about this stuff to really say.
 

duncan

Senior Member
Messages
2,240
The NIH appears to have responded to patient outcries concerning one issue in an appropriate manner.

It remains to be seen what they will do with the resources, e.g., patients, allocated to the FMD control group, just as it remains to be seen how they will handle other issues brought up by patients.