(Stanford, California, USA) Recruiting: Brain MRI and Immune Profiling CFS

via https://cfsme-registry.info

 

Thats pretty cool that anyone can participate but Do we have to go to Stanford for the blood test and MRI?

 

Thanks for the reminder, @Dolphin

 

@JaimeS Can you tell us more about this study?

 

Too bad it’s only for right handed people

 

I guess it's because we lefties arrange stuff differently on different sides of the brain, so brain scanning results may look different. Once they find stuff about right handers, I hope they look to see what happens with us too.

 

It's almost certainly because left-handed people use different parts of the brain. Looking at past brain studies, using more or different parts of the brain is used as evidence of slowed or altered brain function. Naturally, left-handed people may skew those results.

Presumably, after they've looked at right-handed brains, they can extrapolate to left-handed brains and then follow up with a separate study.

 

But that would take care of right handed and left handed people, but those who are ambidextrous would either need a combination cure or an upside down cure

 

What about if you are over 60?
The biobank has an upper age limit too; can't remember if it's 60 or 65.

 

I applied but was not accepted bc of migraine (which is part of M.E., in my case. Hmph.) Is this a subgroup then?
A bit odd bc I was part of the Montoya study in 2010.

 

I applied to the biobank but was too old.

I wonder why they exclude "us ancients". I suppose it eliminates another variable. Dementia will be more frequent on the brain scans. We might be useful as a comparison group at some point but obviously not yet.

Odd that you only have to " suspect" you have cfs.

 

Possibly because migraine causes its own brain changes? IIRC, ME has shown small, punctuate subcortical white matter hyperintensities on MRI. Migraines may cause small lesions too. I'm guessing they want a 'pure' sample where they can be sure the brain changes are from ME alone.

This is good, in general, because the BPS answer to MRI studies has usually been, 'But depression and schizophrenia show changes to the brain too, so there!' (Of course, banging your head against a wall dealing with psychs is also liable to cause measurable injury to the brain...)

Most studies document changes to WM and GM with hypoperfusion, and there's some evidence comparing these changes to MDD and MS to show a unique set of changes in ME. A minority of studies have conflicting results, though, likely due to issues with recruitment criteria. These are the ones the BPS crowd uses to argue against a biological aetiology.

Interestingly, at least one study found that ME patients without psychiatric illness had lesions, whereas those with ME and a psychiatric illness didn't. This meant that overall, it looked like there weren't significant differences between ME and controls, but when you took those psychiatric patients back out, the differences were there: https://www.karger.com/Article/Abstract/119307.

MRI and SPECT have shown some repeated findings in older studies, especially in regards to hypoperfusion (low blood flow in the brainstem alone is said to differentiate from depression).

The more certain we can be that these are 'pure' ME patients, the stronger the evidence will be.

 

I was excluded because I take Imunovir, but apparently LDN was fine (I take both). I understood why though (Imunovir may raise NK cell function, according to Hyde). I'm not sure why LDN is allowed though.

 

Speaking as someone well past 60, I think exploratory studies of a disease should not include me because any data they get may be complicated by the additional effects of ageing, muddying, and possibly hiding the ME/CFS specific effects.

I would rather they studied well diagnosed younger people with ME/CFS and no other comorbid condition to help get clearer data. If something of interest is discovered it can then be tested in other groups.

 

Well, this is good then, bc perhaps they will inadvertently prove that migraines are not the cause of the lesions, but whatever causes the lesions causes migraine! I have always found it a bit suspect that they are presumed to be the cause.

 

No, I can't; so far as I know, this isn't associated with the same folks.

 

I filled out the online questionnaire two weeks ago and got an automated confirmation. If I get a response, I'll post in this thread.

To be honest, I almost didn't sign up. When I had neurocognitive testing a year ago, I crashed so hard afterwards, it took me weeks to recover. The thought of going through that again distresses me.

Oddly, I find MRIs a rather soothing experience, so no worries there.

 

It's been about a month since applying, and I've received nothing but the automated reply. I question if they are, in fact, still actively recruiting.

I don't plan to follow up on this, as I'm already in Dr. Davis' studies at Stanford (thanks to @JaimeS ).