Jarred Younger on CFS subgroups (video)

[alex3619]

The infection question... My illness sure 'feels' like a neurological infection.

The problem with this is that the infection feeling is about cytokines and other substances produced by the body, usually in response to infection, which amongst other things send a message to you to slow down. There may be many other causes though.

 

[alex3619]

Wow! He is hiring a phlebotomist to go to the homes of bedbound patients because they are so poorly studied. This guy is a bomb!

Many of the rapidly advancing areas are because they are no longer just studying the easy to enroll mild patients. Severe and very severe patients are a great asset to finding what is wrong, as the signal will be much stronger.

 

[Sushi]

Many of the rapidly advancing areas are because they are no longer just studying the easy to enroll mild patients. Severe and very severe patients are a great asset to finding what is wrong, as the signal will be much stronger.

I'd also like to see them study patients who have been sick for 20 - 30 years or more. Who know how we might test differently.

 

[John Mac]

Cort has posted an article covering the video.

https://www.healthrising.org/blog/2017/07/15/immune-subsets-chronic-fatigue-syndrome-younger/

 

[Anne]

Apologies if this has already been discussed, I haven't read the entire thread and i haven't watched the video (very tiny "computer envelope").

Cort writes that the CRP group is probably an infection group, because CRP is usually triggered by infection and not by autoimmune diseases. I would perhaps question that, seeing as CRP is a marker in several autoimmune rheumatological diseases elevated CRP.

In Rheumatoid Arthritis, for example, elevated CRP is one of the main markers. https://medlineplus.gov/rheumatoidarthritis.html#cat_92

Same with Polymyalgia Rheumatica https://medlineplus.gov/polymyalgiarheumatica.html#cat_92

and others.

Judging by this, I’m not sure the CRP group would necessarily be an infection group?

Does Younger connect CRP with infection and not with autoimmune diseases?

@mango FYI

 

[Anne]

@Jonathan Edwards , if you have the time, do you have any comments on the above?

 

[Ben H]

Hi guys,

I posited the question to Prof. Younger (who was kind enough to reply) about how for many of us, the fatigue does not let up and is at constant level all the time. (Which was my first thought when I saw the video). Here was his reply, which he was more than happy to have posted on the forum:

Hi Ben,

That is a good question. In this particular study, we can identify possible biomarkers only if they "move" with changing fatigue. So, as you are suggesting, if the fatigue does not fluctuate, then we cannot conduct the analyses. The pattern recognition algorithms can't work without movement.

There are two scenarios that could work for individuals with high and unwavering fatigue severity. The first possibility is that the same analytes are driving fatigue in those individuals, but the system is elevated every day. In that case, we will first make sure we have the handful of most important markers in the fluctuating group, and then we will see if those markers are elevated consistently in the non-fluctuating group. If so, we would have a consistent story to work with. The other possibility is that the individuals with high and unwavering fatigue have a different driver of fatigue. In that case, we will identify those people based on their fatigue and then see if any baseline blood measures (we take lots of them) predict who is in that group. That will give us information about what is wrong.

The downside is that those analyses are cross-sectional, and require more participants to complete the study before we can do the statistics. If someone has varying fatigue, we can do analyses just on that one individual. If they have invariable fatigue, we need a large group. But we are running 40 people every year and so it won't take too long to do the analyses that need to be done. Probably by the end of this year.

Another important thing is that we have a budget to run some people who have ME/CFS so severe that they can't come to the laboratory. We will be looking very closely to see whether they have a different form of ME/CFS, or a more severe case of ME/CFS (based on the blood results). But the bottom line is that it is clear from the analyses that many participants have high and consistent fatigue. We will not forget about those participants. We will be exploring the blood results in everyone, and will try to assign everyone in a meaningful physiologic group regardless of their symptom presentation, to suggest targeted treatments.

Jarred

Anyway, thought you guys would be interested!


B

 

[trishrhymes]

Thanks for that Ben. Jarred Younger does seem like a really sincere researcher doing his best to study ME properly, including severe patients. That's great news. And I love that he's so willing to communicate with patients. If that means he sometimes tells us about bits of his research that may not end up going anywhere useful, that's fine. I'm sure he will be open about that too. It's clearly much too early to tell whether this particular idea has legs, so to speak.

 

[Kati]

Thank you @Ben Howell for relaying Jared's response.

The problem I have is that what I got is not about fatigue. It is orthostatic intolerance, it is brain fog, it is post exertional 'malaise' (hate that word), it is lactic acid build-up if I over extend my capacity.

The concept of fatigue implies tiredness and the need to sleep, and by doing so one feels better. This is not the case with our illness. (at least mine). As I am typing, propped up in bed, my body is reminding me I should not be upright while thinking. This is not fatigue. This is gravity urging me to lay horizontal because the demand to my brain are too high. This is not fatigue.

 

[trishrhymes]

@Kati, I agree fatigue is a much misunderstood and misused word, to our great detriment. I too am lying in bed typing and can't be upright for long. And my symptoms don't get better with rest or sleep either.

I don't know what word to use for the feeling that my muscles have used up their energy supply and there's none left to hold me upright. It's not weakness exactly nor is it tiredness, and it's been there right from the start of my ME when I was pretty fit, so it's not de-conditioning. I wish there was a better word to describe it.

I find I resort to metaphors, like having a faulty battery that flattens quickly, takes ages to recharge and can only recharge to about 10% of normal capacity if I'm lucky.

Getting back to Jarred Younger, I think he gets this - he says he is studying fatigue because there is not a better word for whatever it is that depletes us of energy so rapidly and for such long periods.

Can you suggest a better word?

 

[Kati]

Can you suggest a better word?

No i don't have a better word but fatigue is a loaded word especially when that word has been used to explain a whole disease. I know fatigue is not the right term at least for me. I hope we can find a mechanism of disease soon.

For me, thinking (computer work, calculations, and talking, selectively) is a great energy drain especially when upright or standing. There are things I can do sitting in my scooter like going for a ride in nature, do my groceries, as long as I don't talk, which will not drain me.

I think that much of my symptoms are related to the ability to supply sufficient blood to my brain and sufficient energy to my muscles, but at this point, i am not attached to one theory. i just want to get better.

 

[silky]

Can you suggest a better word?

Neurological exhaustion

 

[trishrhymes]

Neurological exhaustion

A possibility, but I don't know whether my muscles in my legs ceasing to be able to hold me upright after a couple of minutes is neurological or mitochondrial / muscular directly. It may have nothing to do with my nerves or brain.

'Energy depletion' might be another possibility, I guess. This can apply right across all body systems, especially muscles, brain which are the biggest users of energy.

 

[trishrhymes]

but at this point, i am not attached to one theory. i just want to get better.

Me too.

 

[Kati]

Neurological exhaustion

See, I am not certain this is neurologically driven.

 

[Anne]

I've also been thinking about the word issue.

Energy deficit?

 

[Kati]

The terminology we use matters a lot.

To take a few examples, the use of twitter hashtags have become quite contentious to me. Some people use #myalgicE or #neuroME. I absolutely hate using MyalgicE because then people not attune to our field think we have a pain problem. Moreover, myalgia is not considered a serious symptom in medicine. I have encountered this in trying to explain ME to a professional who either thought i had a pain or fatigue problem.

Then 'post exertional 'malaise'' ugh. Post exertional neuro-immune exhaustion is not a better term. Is there actual proof that your immune system become exhausted after exercise?

Lastly 'Systemic Exertion Intolerance Disease' still mentions we are 'intolerant' which is subjective and portrays a certain character flaw.

It is a big issue in trying to attract more researchers and physicians to the field. We are stuck with terminology that cannot quite describe what we are experiencing on a daily basis.

 

[Valentijn]

Can you suggest a better word?

Debility.

 

[Kati]

Debility.

The french translation of debility means mentally delayed.

 

[Anne]

I use the Swedish version of energy deficit, it works better than "fatigue" which doesn't explain my situation at all.

The other main symtom for me is "flu-feeling". We all know what it is, everyone has had the flu and knows that feeling and just how impairing and horrible that can be, but how to put it into words?