Possible Brain Biomarker for ME/CFS Found

[Kati]

100% specificity is very impressive, even in a preliminary study. It basically means that if someone has that abnormality as described, they have ME/CFS, correct? But only 82% of ME patients would have that abnormality?

If it holds up in bigger studies that would be quite a breakthrough.

And then, what happens for the left handed patients?

 

[alex3619]

Has anyone else had this, where you say the wrong word, but that wrong word is from the same general category as the right word that you should of said?

My word mistakes fall into one of three categories. First, I know the word, what the heck is it? Second, I use a similar word. Examples including switching library and bookshop. Third, I use a similar sounding word ... auditory not spelling similarity.

On brain dysfunction and studying, when I was studying IT I only had mild CFS. I could study full time and ... spend the rest of my time recovering. When I was into my PhD, after pushing myself for a year before that, my ME took a quantum leap. I eventually gave up my PhD candidacy when I could no longer reliably read, write, count to 3 or walk even short distances. This was the beginning of a very bad few years for me, where I was much worse than I am now. During this time I found speaking or listening to people painful. I hated talking with anyone.

 

[alex3619]

The intriguing thing about this new finding of abnormalities in the right arcuate fasciculus in the brains of ME/CFS patients is that it occurs asymmetrically, on just one side of the brain.

Thinking in terms of a viral etiology, what would confine the effects of a virus to just one particular side of the brain? I cannot think of any anatomical structures that are asymmetric in the brain, that could explain why this abnormality was present on just the right side of the brain.

I suspect the issue is not in either arcuate nucleus per se. The arcuate nuclei have asymetric function. If something the left AN is using is different to the right AN, and that something is not working. then the left AN may be subfunctional. Then the right AN may expand to partially compensate. This is only speculation of course.

 

[alex3619]

It also assumes the radiologist documented findings that didn't strike them as odd/pathological. Many of them classify brain scans as MS/not MS... brain tumor/not brain tumor... and so on through whatever main condition(s) they were looking for.

One of the issues we have, all over the ME literature, is that doctors and researchers only find what they are looking for. When investigating us with blood tests, or MRIs, or any other technique, they select certain tests and are looking for specific things, or interpret results in certain ways.

You nearly always wont find what you are not looking for, particularly if it is subtle.

What is worse though is many jump to the conclusion that, after having not found what they are not looking for, nothing is there.

Until we have definitive markers or patterns that can be condensed and taught, and written up in textbooks, this will continue.

 

[RustyJ]

We seem to have many of these small studies that seem promising but no one replicates them with a larger study. Is it all because of the lack of funding? This is beyond frustrating. It's like being constantly teased and no follow up.

To add insult, some commentators use small study size to dismiss findings which further undermines opportunity to investigate further.

 

[Snow Leopard]

100% specificity is very impressive, even in a preliminary study. It basically means that if someone has that abnormality as described, they have ME/CFS, correct? But only 82% of ME patients would have that abnormality?

If it holds up in bigger studies that would be quite a breakthrough.

Yes, the problem is that it is only compared to healthy controls. It may be simply a marker for fatigue - when people are fatigued, there may be more activation of certain parts of the brain.

So it might not actually be that specific in the grand scheme of things.

 

[Kati]

Yes, the problem is that it is only compared to healthy controls. It may be simply a marker for fatigue - when people are fatigued, there may be more activation of certain parts of the brain.

So it might not actually be that specific in the grand scheme of things.

interesting point, @Snow Leopard. i think that the next team that plans on another study could take the challenge on comparing the scans with MS, rheumatoid arthritis, lupus and dementia. (Any other groups i forgot?)

 

[Valentijn]

And then, what happens for the left handed patients?

They may very well have significant results which are different from the righties. But they'd need a bigger group to look at them properly.

 

[Kati]

They may very well have significant results which are different from the righties. But they'd need a bigger group to look at them properly.

Raising my left hand

I've had once a neurologist that started her consult report with the mention I was right handed. Fail!

 

[MeSci]

@MeSci
Aphasia is I think much more common in migraine than the medical info would have us believe. I have seen quite a few people with aphasia and also apraxia of speech due to migraine in my work as a speech therapist. It can present just like a TIA or mild stroke.
I hope you are feeling better now...

My first sign of migraine is yawning! If I take aspirin immediately, I can sometimes stop it developing.

I'm fine now, thanks. I often have bouts of yawning, so that wouldn't be any good as a warning for me!

 

[snowathlete]

After reading the main article here as well as some of the posts such as @snowathlete's, I dug out my "normal" MRI from last year. A few interesting points from the report:


That's certainly not normal; see the thread Empty Sella Syndrome and CFS: A patient study. It appears that whatever is not understood is dismissed as "normal".

Except that from my history, there's no reason to suspect mild microvascular ischemic disease, nor have I ever had migraines. My primary diagnosis was CFS, but radiologists don't know any more about this than the man in the street.

I looked at the pictures when I got them, and compared to an MRI taken before my final relapse, the volume loss did not look mild, nor did it look like a typical volume loss for that amount of time. Instead, the pictures looked much closer to those of my mother, who was diagnosed with Alzheimer's at the time hers were taken, than to my previous ones. That much volume loss shook me up a bit.

And of course, no one did diffusion-tensor imaging on me. That would have been interesting.

I would suspect that there are plenty of abnormalities on "normal" MRIs of PWME that correlate with known abnormalities found in ME/CFS. There's a lot of data out there in the MRIs that a lot of us have had taken that would be very interesting to analyze. Of course, this would best be done by professionals who were up to date on the latest ME/CFS research. In the mean time, people with recent "normal" MRIs might find it useful to go over their reports. It may also be useful to bring to the attention of your doctor those abnormalities that were missed but that are consistent with what is found in ME/CFS. This assumes, of course, that your doctor is at least somewhat open-minded.

What happened with these guys who wanted to do a study looking at this, on the other thread? I might ask for a copy of my MRI - what do you get, images on a cd? At the time they were checking there wasn't any brain tumour so probably didn't look too carefully for other stuff.

 

[Bob]

Article in The Daily Mail (UK) online... (The Mail online has the largest online worldwide readership for a newspaper)...

Is this proof chronic fatigue DOES exist? Scientists find three differences in the brain that suggest condition may not just be 'in the mind'

By LIZZIE PARRY FOR MAILONLINE
30 October 2014

http://www.dailymail.co.uk/health/a...es-brain-suggest-condition-not-just-mind.html

Is this proof chronic fatigue DOES exist? Scientists find three differences in the brain that suggest condition may not just be 'in the mind'

• Study at Stanford University examined MRI scans of CFS patients comparing them to those of healthy volunteers
• Found three distinct differences in different parts of the brain
• CFS patients found to have lower levels of white matter - which carries information and signals between different parts of the brain
• A tract connecting the frontal and temporal lobes was found to be abnormal
• And grey matter - which processes information - in those two areas of the brain was thicker in CFS patients
• Hopes the discovery will lead to better diagnosis and treatment of condition
• Adds weight to debate over legitimacy of the condition, which is constantly questioned and mistaken as being hypochondria

Read the rest here:
http://www.dailymail.co.uk/health/a...es-brain-suggest-condition-not-just-mind.html

 

[Cheshire]

The news is also spreading in France, where ME/CFS is seldom mentioned.

I'm just astonished... Even in the most important GP newsletter!

 

[justy]

I remember, especially in my early years of ME/CFS, I had some intriguing language difficulty phenomena: in addition to forgetting words, losing vocabulary, and having sudden difficulty in spelling words, perhaps the oddest language symptom I experienced was the frequent selecting of incorrect words while talking, often in a bizarre way, where I would select a word which was incorrect, but the incorrect word was from the same category as the right word – for example, I might incorrectly say “pun” when I meant to say “irony” – both are in the same category of literary devices.

Has anyone else had this, where you say the wrong word, but that wrong word is from the same general category as the right word that you should of said?

Yes this has been very common for me. I would want to say can you get the butter from the fridge, but might say instead can you get the butter from the oven. Another big problem has been saying the wrong word, but the word I chose was related to either the last thing I was talking about, or the thing my eyes rested on.

Last summer when I was driving a little I kept saying - hang on I just need to light the engine - instead of start the engine. Lols all round for my kids, but very worrying for me. I am currently studying for a degree and it takes ages to write an essay as I often sit and stare into space trying to recall a word and it is mentally gruelling to study.

 

[Hip]

@justy
Before I developed ME/CFS, I used to use the supplement acetyl-L-carnitine (ALC) to improve verbal fluency in writing. I read some research that found ALC was a smart drug (nootropic) which increased language and verbal abilities.

Subjectively, I found that when taking ALC, it greatly helped my mind to select the most appropriate word or concept when writing essays. Even for healthy people, when writing, you often have a sense that there is a perfect word for your purposes, but you can't seem seem to retrieve it. ALC I found made it much easier to pluck that apposite word or concept out from the depths of your mind; the right word just seems to pop into consciousness almost effortlessly.

Nowadays, for my ME/CFS, I take 1000 mg of ALC daily, as an antioxidant. If I don't take ALC daily, I find I develop a craving for chocolate, which is a good antioxidant that has been shown beneficial for ME/CFS. So somehow I think ALC has the same antioxidant effect in my brain as chocolate, but without the calories.

I buy ALC cheaply in bulk here.

 

[CantThink]

A memory problem I've had since coming down with ME is a reduced ability to store information that is spoken to me.

I have this too. The directions thing is a nightmare. I just can't ask as I wouldn't remember beyond the first instruction and I noticed this... I have a really good sense of direction and weirdly I'm good at map reading (take after my dad), but my mum is awful at map reading and has extremely poor sense of direction, yet she can be verbally given directions by a person, then remember it and follow it. I can't.

I really noticed this earlier in the year when she took me to a new and rabbit warren like hospital. We got dropped off by the bus at wrong stop; after an attempt by myself to extract and follow verbal instructions, we were lost. So my mum tried - she asked for verbal directions on how to get to the area we needed and remembered it, followed it.. I just couldn't do it. After the scan I has to wait for her as I tried to find her and again got totally lost.

What seems poor in me is my memory (short term?) And ability to recall information. I'm okay with a map or list of directions as I don't have to remember or recall... It's happening in the present right in front of me.

I think that game where someone brings in a tray of objects and let's you look at it for a bit then takes it away abd asks you to remember as many as you can is a good way to demonstrate this. As is that card game where you have to match the sane two cards after turning cards over.

 

[Bob]

I'm not sure if this has been posted yet... It's a short Stanford Medicine blog...

Some headway on chronic fatigue syndrome: Brain abnormalities pinpointed
Bruce Goldman
October 29th, 2014

http://scopeblog.stanford.edu/2014/...igue-syndrome-brain-abnormalities-pinpointed/

Some extracts:

The 15 patients were chosen from a group of 200 people with CFS whom Stanford infectious-disease expert Jose Montoya, MD, has been following for several years in an effort to identify the syndrome’s underlying mechanisms and speed the search for treatments. (Montoya is a co-author of the new study.)

Exactly what all this means is not clear yet, but it’s unlikely to be spurious. Montoya is excited about the discovery. “In addition to potentially providing the CFS-specific diagnostic biomarker we’ve been desperately seeking for decades, these findings hold the promise of identifying the area or areas of the brain where the disease has hijacked the central nervous system,” he told me.

No, not a cure yet. But a well-aimed ray of light that can guide long-befuddled CFS dart-throwers in their quest to score a bullseye.

 

[misskatniss]

Shortly before the onset of my first severe relapse, I had difficulties recalling names of people, even those I knew very well. Later, with worsening POTS, I couldn´t find the right word, even for easy stuff like food or similars. And if I push too hard, my grammar goes nuts either. The funniest thing I had related to language and CFS (which made me worry though) was that I started speaking in Italian (to my boyfriend who doesn´t speak that) or recalled the Italian word instead of the German one (while German is mother language, but I have been living in Italy for long). Well, that was and is freaky!

 

[MeSci]

Nowadays, for my ME/CFS, I take 1000 mg of ALC daily, as an antioxidant. If I don't take ALC daily, I find I develop a craving for chocolate, which is a good antioxidant that has been shown beneficial for ME/CFS. So somehow I think ALC has the same antioxidant effect in my brain as chocolate, but without the calories.

I buy ALC cheaply in bulk here.

I think that the chocolate study was debunked, unless there were other better ones.

My chocolate has few calories as it has no sugar - it's sweetened with xylitol.

I do use ALC but a lower dose than you do, and combined with alpha lipoic acid.

 

[CFS_for_19_years]

interesting point, @Snow Leopard. i think that the next team that plans on another study could take the challenge on comparing the scans with MS, rheumatoid arthritis, lupus and dementia. (Any other groups i forgot?)

Based on other ME/CFS studies that have used a variety of control groups, it might be useful to include patients with depression for comparison.