Update on Jarred Younger 'brain temperature' study

[Sasha]

Update here (22 Feb 2018): https://solvecfs.org/2016-ramsay-research-team-1-update/

Includes this (broken up for readability]:

While we are still collecting data, we are already seeing some interesting results. We have to be cautious in discussing what we are finding, because the story can change as we run more people.

But as of right now, we see that individuals with ME/CFS appear to have elevated myo-inositol and maybe lactate across much of their brain, which indicates inflammatory processes. We are also seeing elevated brain temperature deep in the brain of ME/CFS participants, in areas where myo-inositol is increased. One of these regions is the caudate, which could have important connections to fatigue.

It is important to note that we have not seen any signs of neuronal damage. There is a marker of neuron health called N-acetylaspartate that was the same between ME/CFS and healthy controls. This is potentially good news because it suggests there is no neurodegeneration occurring.

 

[Trish]

This study sounds really interesting and potentially valuable.

I don't know quite what to make of the diagnostic process used, as Younger describes it here:

Proper characterization of the ME/CFS group is critical to the success of the project. Fatigue is the most general symptom humans have, and there are dozens of medical conditions that can cause someone to feel profoundly fatigued. It is therefore critical to rule out conditions such as diabetes, adrenal insufficiency, hypothyroidism, anemia, and acute infections that can be mistaken for ME/CFS. We conduct a large number of blood tests on our participants to rule out as many alternative reasons for fatigue as possible. Most individuals with fatigue do not make it through our screening process, and we frequently uncover medical conditions that the patient was not aware they had.

I find it odd that he makes no mention of PEM as a way of distinguishing ME/CFS patients from other 'fatigued' patients. I hope this is just because he is trying to be brief. I don't know what definition he uses.

He says:

We are testing the hypothesis that ME/CFS fatigue is due to inflammation of the brain.

I'm unsure what he means by this. Does he mean that the symptom fatigue is a result of brain inflammation, and that he is hypothesising that this is the full explanation for ME/CFS? Or does he mean that other symptoms, such as muscle fatiguability and pain and PEM might have different causes, and the brain inflammation only affects fatigue (and presumably brain fog)?

 

[guest001]

That does sound very interesting indeed. Thanks for this... I'll share elsewhere.

 

[Little Bluestem]

Most individuals with fatigue do not make it through our screening process, and we frequently uncover medical conditions that the patient was not aware they had.

What does this say about the medical profession in general?

 

[adambeyoncelowe]

It sounds interesting. Perhaps he doesn't mention PEM because, like 'fatigue', 'malaise' is generally a meaningless term. Arguably, illnesses like MS also have their own kind of PEM, which isn't the same as ours (people with MS get worsened fatigue after exertion, but they don't get all the immune flare-ups and other defining features we get). PENE is a better term, in general.

 

[Sunshine3]

He uses Fukuda criteria

 

[brf]

He uses Fukuda criteria

Hmmm...

Thanks @Sunshine3

 

[Effi]

Although I do believe Younger knows very well what ME is, he usually mentions 'fatigue' as the subject of his studies. His lab is called Neuroinflammation, Pain and Fatigue Laboratory. Is that why he is using Fukuda? And does that mean that higher brain temperature causes 'fatigue' not related to a specific illness?

 

[adambeyoncelowe]

Although I do believe Younger knows very well what ME is, he usually mentions 'fatigue' as the subject of his studies. His lab is called Neuroinflammation, Pain and Fatigue Laboratory. Is that why he is using Fukuda? And does that mean that higher brain temperature causes 'fatigue' not related to a specific illness?

Yes, it's surprising he's using Fukuda. It doesn't bode well for his 'three main subgroups' theory.

 

[Stuart]

Well this is interesting, no less in part since I've had many practitioners exclaim at the heat or 'energy' coming off my head.

Once I had ice packs on my lumbar spine and cervical spine left for about 15 minutes, upon removing the lumbar one it was a bit slushy, but the doctor lifting the bag off the cervical spine stopped and exclaimed "It's not only melted, it's Hot!"

I was about to say to him, 'Doc, that is the least of the weirdness we experience in this disease and rarely ever mention to our doctors, because like you seem right now, if you didn't see it yourself, you're not going to believe it, and that doesn't help us to mention it.'

 

[hamsterman]

It sounds interesting. Perhaps he doesn't mention PEM because, like 'fatigue', 'malaise' is generally a meaningless term. Arguably, illnesses like MS also have their own kind of PEM, which isn't the same as ours (people with MS get worsened fatigue after exertion, but they don't get all the immune flare-ups and other defining features we get). PENE is a better term, in general.

Actually, one great thing about Jarred Younger is that he understands that there are different ME subgroups... and he tries to get representation from the groups, so that he can better explain similarites/differences. https://www.healthrising.org/blog/2017/07/15/immune-subsets-chronic-fatigue-syndrome-younger/ So, I'd definitely expect/ hope that he includes the autoimmune subset, and continues on this route.

Although not all people with auto-immune diseases contract ME, those of us who do... get nearly the same immune flare-ups... from the same exertion triggers... after the same 24+ hour delay. From that perspective... were almost identical to post-infection ME sufferers.

There's surprisingly few differences... other than we have gradual onset (instead of sudden), and apparently our immune reaction signature seems to be slightly different. I guess they'll be more on that as more research comes out.