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researcher receives $1.5 million NIH grant to evaluate daily activity patterns and heart rate...

Kyla

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http://www.newswise.com/articles/getting-to-the-heart-of-chronic-fatigue-syndrome

Getting to the Heart of Chronic Fatigue Syndrome
Stony Brook researcher receives $1.5 million NIH grant to evaluate daily activity patterns and heart rate of those who suffer from this debilitating illness

Released: 23-Jun-2016 2:05 PM EDT
Source Newsroom: Stony Brook University


Newswise — STONY BROOK, N.Y., June 23, 2016 – By better understanding daily activity levels and heart rate patterns of those who suffer from Chronic Fatigue Syndrome (CFS), scientists hope to discover more about this complex illness condition. Fred Friedberg, PhD, Associate Professor of Psychiatry at Stony Brook University School of Medicine, has received a four-year $1.5 million grant from the National Institutes of Health to take this research approach to determine if heart rate fluctuations in combination with certain daily activity patterns can be used to predict or prevent relapse in people with CFS.

According to Dr. Friedberg, also the President of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, CFS affects some one million people in the United State and millions worldwide. This condition is characterized by a state of chronic fatigue and other debilitating symptoms, such as post-exertional collapse and cognitive difficulties. These symptoms and related impairments persist for more than six months and have no clearly identified cause.

This study will involve patients self-reporting their symptoms and activities on a weekly online diary over a period of six months. Data will also be recorded from mobile heart devices and activity monitors that the patients wear at home. Over the six month study period, patients will regularly send this objective data back to the Stony Brook laboratory where the information will be downloaded and analyzed for patterns related to CFS symptoms, activities, and impairments. The participants will then be interviewed by a psychiatric nurse via phone about other potentially important illness factors including major life events they have experienced over the study period, their physical and social functioning, and changes in their illness status – i.e., improved or worsened.

“What is promising is that we have proposed an illness model to potentially identify the factors that lead to relapse or improvement,” said Dr. Friedberg. “If a predictor of relapse is discovered, such as heart rate variability in conjunction with certain activity patterns, we may be able to prevent or reduce relapse by adjusting such activity patterns in advance. This could potentially be the first biomarker of illness worsening or improvement in this illness.”

Dr. Friedberg expects that the data collected from the study will be used to generate a new, potentially more effective self-management program that ultimately helps patients avoid relapses and feel and function better.
 

A.B.

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Sounds like the author is expecting to find life events and behaviour patterns that lead to relapses. Hopefully he is prepared to accurately report a null result.

Remniscient of the "boom and bust" behaviour proposed by British psychiatrists, for which no evidence was found in a study using actimetry, but they still go on about it as if it were true.
 

PennyIA

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hmmm... my issue with this is that he's the Associate Professor of Psychiatry... and a psychiatric nurse is reviewing things....

So, while he states it's going to be looking at a biomarker... I'm skeptical.... I'm betting they'll come along and identify that the activities aren't enough to increase the heart rate and it's just anxiety that would ... and lo and behold, it won't be false illness beliefs it'll be anxiety and fear induced by false illness beliefs.
 

PennyIA

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Oh... and see what he did there? He's looking for a biomarker so all of us asking them to fund testing looking at biomarkers are going to be happy (?) and the psychiatrists still get their funds.


grrrrr
 

Kyla

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The researcher in question is Fred Friedberg, who as far as I know is an honest researcher / not part of the BPS crowd.
I think this is a study on heart-rate based Pacing, which I personally think might be helpful. It is obviously not a cure, but using a heart-rate monitor to pace activities better has helped me, and there seem to be a lot of other patients doing so as well.
 

PennyIA

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Pacing is good - it's what keeps me from crashing quite often - but I don't see it yielding a biomarker. That makes it seem like he's looking for something OTHER than how to improve coping mechanisms.
 

Kyla

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Maybe someone with more knowledge of his research/history can weigh in.

There is always a risk of spin with this sort of thing, but for me the fact that they are tying this to objective measures (not just questionairres) is a good thing.
 

Kyla

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While I like the fact that funds are awarded for ME research, there is a long list of other bio research that I would rather receive $1.5 million.

I would rather it go to bio research as well, but if these sorts of studies are going to be done (which currently seems unavoidable) I would much rather they use objective measures, and at least attempt to research something new instead of endless CBT study rehashes ;)
 

PennyIA

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I would rather it go to bio research as well, but if these sorts of studies are going to be done (which currently seems unavoidable) I would much rather they use objective measures, and at least attempt to research something new instead of endless CBT study rehashes ;)
Even better if they didn't just use activity journals and run through interviews with psychiatric nurses then either.

Instead I'd rather have motion monitors and other blood work and tests that prove build up of lactic acid, etc.
 
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I often find bits I disagree with in Friedberg's work, but he's a long way from Wessely school researchers. He wrote a piece somewhat critical of how recovery was defined in PACE, and I think he was the first academic researcher to do so. He seems on patient's side, and I think he's involved in one of the US charities (I'm sure others know much more about him, I never remeber much about the people I don't have a problem with).

I don't know the details of this, but looking at how subjective and objective outcomes sounds like it could be useful?
 
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Justin30

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Activity minitor....I hope they dont use the fitbit as its flaw to accurately capture fast spikes in heart rate. Missing spikes of up to 20 BPM.

Further what if you have POTS and are on many different meds to control heart rate. This could be another problem.

Further i did not see but was selection cruteria ever listed?
 

PennyIA

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While the study won't be useless, I think at best case it *might* prove a point that as patients we've been trying to make... activity outside our 'envelope' can cause PEM. But that's a very big *might* and it's assuming the selected patients were willing to exceed thresholds and incur PEM (I personally, would have a hard time convincing myself to intentionally induce PEM).

And, sadly, even at best case - it would only potentially create better coping mechanisms.

Now that there are SO MANY exciting studies and possible biomarkers for the illness that are begging to be funded? I'd just rather the funds were going there FIRST and this SECONDARILY... and having good biomarkers would help this study get more accurate results if it used those biomarkers for selection criteria.

ETA: Admittedly, part of my concern is that this seems like a big chunk of the OLD budget for ME/CFS; if the NIH were to actually fund this disease with a budget that was 100 times what it used to? and they seem to have been discussing increasing budget... well, then I'd just be cheering for it instead...

When you only get 5 slices ($5M) of budget and one whole slice ($1.5M is more than a slice) is going to go to something like this? It means there's that much less money available for other researchers. If on the other hand we had 500 slices ($500M)? well, ok, one slice ($1 - $1.5M) to help study management of the illness would be a-ok.
 
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panckage

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Sounds like the author is expecting to find life events and behaviour patterns that lead to relapses.
In this forum many people have talked about life events (causing an increase in exertion/stress) leading to crashes. I don't quite understand the cynicism. If we overdo it we crash. Maybe this study can support the use of heart rate monitors to avoid crashing with a correlational study

Personally I am interested in the result with interest to chronotropic incompetence which I have heard is common for this illness but I don't recall reading any research papers specific to this yet
 

duncan

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"The participants will then be interviewed by a psychiatric nurse via the phone about other potentially important illness factors including major life events they have experienced over the study period, their physical and social functioning, and changes in their illness status..."

This sends up red flags. Why a psychiatric nurse? Why major life events - and why does he include major life events as potentially important illness factors? Why did he earlier refer to patient reports as "self-reporting"? (This is disturbingly common in insurance-speak.)

This sounds like psych happy-hour to me.
 

duncan

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A REALLY REALLY famous Lyme psych - supposedly a huge chronic Lyme advocate - gave a speech on Lyme and Psychosomaticism.

I was just as critical with him.

This stuff is not being done in a vacuum. If they are our advocates, they should know this.