Research Study on Post-Exertion Malaise in CFS/ME at the University of Wisconsin-Madison

S

Sasha

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Saw this on Cort's blog and haven't seen it posted here:

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Your Brain for Science. An ME/CFS Research Project Wants You!​
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The University of Wisconsin’s study to uncover the roots of post-exertional malaise in chronic fatigue syndrome is going to see what happens to your brain after you exercise. Given my cognitive declines my guess this scan is going to show something significant.​
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If you’re female and want to help determine why exercise can be so, so damaging in ME/CFS, this study is recruiting now. The study takes place over 3 days. Participants will receive $225. (Meals and lodging are not included.)​
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Call this number (608) 262-2457 for more information.​
 
S

Sasha

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Someone posted this in comments, with more info (rather a negative take - I suppose it depends on how you weigh up the personal cost of taking part in the study against the benefits for all, which is not a trivial question, of course):

Cort,​
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I called the University of Wisconsin to get more information about the study. It is not too far from Chicago. It requires about 10 hours worth of time over a 3 day period.​
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There are no accommodations for meals or lodging, you are own your own at your own expense! There is very little of the information that they gather that they are able to give to patients individually. It will be done on a group basis.​
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While I know and believe in the value of research, it is a high price to pay to gain little or no insight into our own personal situations.​
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I hope that they are able to get a patient population from their surrounding areas so that people do not have to travel. They also expect 25 minutes on a stationary bike.​
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That would indeed be a high cost, can’t even imagine the damage that could do to an ME patient. We are damned if we do and damned if we don’t.​
 
U

UW-Madison Research

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Please see the attached flyer (or below) for more information about a study we are currently conducting examining PEM in CFS.


An Investigation of Post-Exertion Malaise in women with Chronic Fatigue Syndrome


The University of Wisconsin is conducting a study aimed at understanding:

The mechanisms of post-exertion malaise in chronic fatigue syndrome (CFS)

We are asking for female CFS volunteers to participate in this study at the main campus of the University of Wisconsin, Madison, WI. The study will require three visits to the campus.

We will be analyzing blood and brain responses across the three-day study.

You will receive up to $225.00 for your time and effort.



If you wish to participate, please leave your name, phone number and mention “Post-Exertion Malaise Study” at 608-262-2457
 

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SOC

SOC

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@UW-Madison Research
Could we get a little more info on how you plan to create PEM and more specifically what blood and brain responses you will be measuring?

Is this 3-day study taking place over 3 consecutive days, or 3 days spread over some number of weeks or months? Since the PEM caused for the sake of this research is likely to cause significant impairment for participants, it would help to know the scheduling/timing. Are you looking for participants only in the Madison area?
 
V

Valentijn

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@UW-Madison Research - I must say, the website for CFS from UW's medical website is not at all reassuring. Is this the same disease model being used by the researchers?

If 6 months of fatigue is the most important symptom, you're going to produce a rather useless study. I doubt many ME/CFS patients as defined by the International Consensus Criteria or Canadian Consensus Criteria would want to risk a major relapse in what might just be a "fatigue" study. And the site's focus on GET is highly repugnant and likely to be harmful to ME/CFS patients.


The phone number given leads to this little blurb about the study: http://kinesiology.education.wisc.edu/kinesiology/research/laboratories/exercise-psychology
The researcher listed to contact is Morgan Shields, who is a psychologist. Prior research into fibromyalgia is a bit, well, typical of what we see - a simple correlation between inactivity and pain is used to suggest that more activity will reduce pain, even though it is possible that inactivity is the result of the pain, not the cause. And, of course, psychosocial factors are presumed to play a part.

So it's another psych study, and probably using a very bad definition of CFS.
 
peggy-sue

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The study even specifies "chronic fatigue syndrome", not ME.
I don't have "CFS". I don't have "fatigue".
I have ME.

CFS and ME are not the same things.

Why would they even expect to see PEM in CFS?
 
PennyIA

PennyIA

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peggy-sue said:
Why would they even expect to see PEM in CFS?
Click to expand...

Remember - this is US-based. Sadly the US medical 'experts' still refuse to acknowledge ME at all and combines it all under CFS. So, sadly, at this point, it's just all thrown into the same bucket around here.
 
SickOfSickness

SickOfSickness

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ggingues said:
I don't see how this is done? Is it just my viewing or does nobody else see this posted, besides the link to a pdf?
Click to expand...

It was done in post 3, not the original post. The contents of the PDF is the bold text ("An Investigation...") to the end where the phone number is given. The PDF has some image too but the text was copied.

I was confused at first too.
 
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