Unofficial blog looking at OMF's Severely Ill Big Data study so far

[Andy]

A first glance at the results of the “severely ill big data study” that was launched two years ago and that have been presented during the Community Symposium, held in August at Stanford (pics and contents are from this video and this other one).

There is an alteration in cortisol production, with a low level early in the morning and an higher than normal level as time passes by (figure 1).

Figure 1. There is a distruption in cortisol secretion in patients vs controls, with low cortisol early in the morning and a slight increase later on.

https://paolomaccallini.wordpress.com/2017/12/10/severely-ill-big-data-study-a-first-glance/

 

[Helen]

"There is an alteration in cortisol production, with a low level early in the morning and an higher than normal level as time passes by"

That´s my experience as well. I have more energy when I go to bed, than when I wake up in the morning and for another couple of hours.

Could those data be related to the work by Wilfred De Vega and the Canadian team? They found a subgroup of PWME with epigenetic modifications and glucocorticoid sensitivity.

 

[Helen]

Did you notice that the blog is written by the signature Paolo on PR? Great job! Hope to see him here.

 

[Esther12]

Thanks.

Does anyone know how figure 5 was made, how this compares to (for example) healthy controls, or how different groups with different illnesses compare to one another?

 

[paolo]

Did you notice that the blog is written by the signature Paolo on PR? Great job! Hope to see him here.

Hi! Here I am. Thanks for sharing!

 

[Andy]

Hi! Here I am. Thanks for sharing!

Welcome to S4ME Paolo, glad you could join us.

 

[Subtropical Island]

Thanks.

Does anyone know how figure 5 was made, how this compares to (for example) healthy controls, or how different groups with different illnesses compare to one another?

(Um, I may be misunderstanding your question but) isn't the blue/cyan/teal colour on figure 5 the healthy controls? is that what you're asking?

 

[Esther12]

(Um, I may be misunderstanding your question but) isn't the blue/cyan/teal colour on figure 5 the healthy controls? is that what you're asking?

I could well be misunderstanding something, but this was the figure I found it hard to assess the significance of:


This is all new to new to me, and I don't know how to start to assess whether these findings are likley to be important. @paolo - are you able to help me out (no worries if it's really complicated to explain).

 

[paolo]

I could well be misunderstanding something, but this was the figure I found it hard to assess the significance of:

View attachment 1022
This is all new to new to me, and I don't know how to start to assess whether these findings are likley to be important. @paolo - are you able to help me out (no worries if it's really complicated to explain).

This is a study of gene expression: they have studied which genes are expressed by peripheral blood white cells in their severe ME patients (and how much each gene is expressed) and then they have searched for similarities with what we know about gene expression in known diseases.

Interestingly enough, although ME has always been associated mainly with viral diseases, in this study we see a similarity with diseases due to bacterial and parasitic infection.

 

[Esther12]

This is a study of gene expression: they have studied which genes are expressed by peripheral blood white cells in their severe ME patients (and how much each gene is expressed) and then they have searched for similarities with what we know about gene expression in known diseases.

Interestingly enough, although ME has always been associated mainly with viral diseases, in this study we see a similarity with diseases due to bacterial and parasitic infection.

Thanks. Do you have any idea what sort of results we'd get for the same test if it was applied to people with MS, depression, healthy controls, etc?

 

[paolo]

Thanks. Do you have any idea what sort of results we'd get for the same test if it was applied to people with MS, depression, healthy controls, etc?

They have considered data on all sort of diseases, I guess. So, as MS is not on the list, it probably means that the score of the comparison between MS and ME is below 79%. The same applies to healthy controls. The bottom line is that ME seems like systemic inflammatory response syndrome and - to a lesser extent - to bacterial and parasitic diseases, more than to any other disease or to healthy controls. At least for what concerns gene expression of peripheral white blood cells.

 

[Esther12]

They have considered data on all sort of diseases, I guess. So, as MS is not on the list, it probably means that the score of the comparison between MS and ME is below 79%. The same applies to healthy controls. The bottom line is that ME seems like systemic inflammatory response syndrome and - to a lesser extent - to bacterial and parasitic diseases, more than to any other disease or to healthy controls. At least for what concerns gene expression of peripheral white blood cells.

Thanks - sorry I may not have been clear. I meant what sort of results something like MS, etc would with the categories assessed in the above figure (systemic inflammatory response syndrome, diseases caused by parasites, gram negative bacteria, etc). I'm entirely new to this sort of testing, so wondered what a score of '100' really meant, and thought comparing it with scores from other illnesses would be useful.

eg: It could be lots of unrelated illnesses happen to end up with high scores for similar gene expression, and so these scores don't mean much, or it could be that a score of 100 means we can be really confident that there's some shared mechanism between CFS and systemic inflammatory response syndrome.

 

[paolo]

Thanks - sorry I may not have been clear. I meant what sort of results something like MS, etc would with the categories assessed in the above figure (systemic inflammatory response syndrome, diseases caused by parasites, gram negative bacteria, etc). I'm entirely new to this sort of testing, so wondered what a score of '100' really meant, and thought comparing it with scores from other illnesses would be useful.

eg: It could be lots of unrelated illnesses happen to end up with high scores for similar gene expression, and so these scores don't mean much, or it could be that a score of 100 means we can be really confident that there's some shared mechanism between CFS and systemic inflammatory response syndrome.

Ok, so now I have understood what you meant, sorry. I don't know the answer. It would be interesting to see this kind of test for MS, yes. Someone previously did a test like this for post-treatment lyme disease syndrome (PTLDS) and it turned out to be similar to Lupus, more than it is to ME (R).

 

[Esther12]

Thanks - I expect it was my fault for not being clear.

Someone previously did a test like this for post-treatment lyme disease syndrome (PTLDS) and it turned out to be similar to Lupus, more than it is to ME (R).

That is interesting. When PTLDS people can often be diagnosed with ME/CFS, maybe that shows what a rag-bag ME/CFS is?

 

[zzz]

The bottom line is that ME seems like systemic inflammatory response syndrome and - to a lesser extent - to bacterial and parasitic diseases, more than to any other disease or to healthy controls. At least for what concerns gene expression of peripheral white blood cells.

Medscape has a good introductory article on SIRS. From the article:

SIRS is defined as 2 or more of the following variables (see Presentation and Workup):

• Fever of more than 38°C (100.4°F) or less than 36°C (96.8°F)
• Heart rate of more than 90 beats per minute
• Respiratory rate of more than 20 breaths per minute or arterial carbon dioxide tension (PaCO 2) of less than 32 mm Hg
• Abnormal white blood cell count (>12,000/µL or <4,000/µL or >10% immature [band] forms)

Based on these criteria, I qualify as having SIRS typically several hours a day. In the past, I've had all four symptoms for extended periods. I expect that I have plenty of company here in this regard.

I also found the following Venn diagram from the article to be very helpful.

​

After reading about SIRS, I can see why its gene expression is so similar to that of ME/CFS. Obviously, there are huge differences between the two diseases, but there are some very interesting similarities as well. And something is causing very similar gene expressions in both cases.

Overall, there seems to be a lot of useful data coming out of this study. Thanks, @paolo!