DecodeME - UK ME/CFS DNA study underway

A big German newspaper mentioned the DecodeME study today (translated):

https://translate.google.com/translate?hl=de&sl=de&tl=en&u=https://www.berliner-zeitung.de/gesundheit-oekologie/chronische-krankheit-mecfs-betroffene-fordern-einen-runden-tisch-in-deutschland-li.89592

 

I noticed that at the website it says this:

I have no problem with this. I can understand how including people who once met the criteria - but who no longer do - could introduce uncertainties (though presumably no one's genome changes due to either onset or improvement).

At some point in the future, though, it might make sense to sequence the genomes of those who have improved. Finding differences between criteria meeting cases and controls could provide clues about how the disease comes about, but it's also possible that finding differences between cases, controls and those who've improved could provide clues about what might have led to that improvement.

[Also, if there's a genetic signature common to those who meet the criteria, that could be used to "verify" whether the improved individuals likely did meet the criteria at one time - although you could always have such a signature without ever having developed ME/CFS.]

 

Another German newspaper mentioned the study (the German Association included it in a press release):

https://www.tagesspiegel.de/gesells...onen-me-cfs-patienten-in-europa/25957826.html

 

I know we are going off topic a bit here, but you summarised my thoughts and experience. I feel as though PEM is often described as something that is well understood and characterised, when it isn't. I seem to have a semi-regular fluctuation of symptoms that is not fully-described by my activity levels, or exertion. That's not to say there is no correlation. This is against a backdrop of illness that I don't think would resolve if I completely rested for weeks or months.

Furthermore, I feel many pwme give too much credence to their activity levels and how they attribute their crashes or better periods to activity levels or exertion. You will always find something if you are looking for it. Was it the walk, or watching TV. Maybe it was the gluten I ate, or maybe my neighbour's house is moldy! It is my personal view that many of us have less control over our symptoms than we think.

Edit: Added more descriptive sentences.

 

Because its a genome-wide association study, the approach won't be the usual "Is there a significant difference or not?" It will be "Which associations are strongest, and which ones survive when we correct in various ways?" So there will almost certainly be something to report from the results. The question is only what, and how reliable the associations will be.

 

Yes, mine too. You find the set of positively associated SNPs, and then you look at the degree of overlap between this set (the genome "signature" if you like) and those for other diseases. So its a sort of way of making indirect arguments about the associations between different disease trajectories, without the having to deal with the strong contaminating effects of environmental factors.

I am worried about this too. It seems to me, everything comes down to the integrity of the disease definition. I know lots of people here think that having PEM as an inclusion criterion will help narrow the group to a single disease, I'm less convinced that PEM is specific to a single disease (still think that even severe PEM might have muliple potential causes).

 

I have been thinking about the PEM thing. A lot of the problem comes down to words and how we use them. When ME became CFS, many new patients spoke about the disease in a different way than I was used to. For one thing, they all spoke about fatigue which had not really been a big part of talking about the disease before, more a sort of in passing thing like with MS.

I wondered if it was because being told that fatigue was the important thing they were calling things fatigue when I would not have used that word to describe what I experienced. So if I was forced to spend all afternoon lying in bed I would have said I felt too ill to get up because of a flu like feeling but now someone would assume they were experiencing the extreme fatigue of CFS. Not saying they were wrong just that the language of the discussion changed with the name change while the symptom remained the same.

What we call PEM is unique to ME but PEM may not convey that set of symptoms so that others see it properly.

One description of ME is being able to lift a heavy bag of potatoes once but not a spoon to your lips five times. That problem with repeatability may give a better insight into what is going wrong for us in a way that can't be interpreted wrongly by nonsufferers who think they know what fatigue feels like and post exertional malaise.

I was reduced to a complete inability to move by twiddling a radio knob for 5 minutes, which is not normal and definitely not deconditioning. When I first needed my wheelchair, my husband would push me along a pleasant route for an outing. There were 2 steep bits where I would get out and walk pushing my chair. Friends were amazed that I could walk 6 or 7 steps almost vertically exactly the same as on the flat. It was the number of repeats that counted not effort.

This repeatability would be easier to test and experiment with than CPET testing with less risk. Maybe we are still interpreting things as due to fatigue because of the name. This forum is probably the only place where we could talk all round this and try to find a clear way to describe our disease and its relationship with energy use.

 

this

 

Paywall, https://www.belfasttelegraph.co.uk/...ople-on-living-with-the-illness-39325569.html

 

from MEA
Free Leaflet: DecodeME
https://meassociation.org.uk/2020/07/free-leaflet-decodeme-the-largest-ever-genetics-study/

 

Just curious - why is that bad?

 

Harder to read on smaller devices.

 

Having thought about this, I’m not convinced. One column means the effective size of the letters would be lower than two column pages.

 

As a leaflet, it's designed to be printed onto paper, so I think it's fair enough. But I wonder if there needs to be something designed for phones?

 

I hadn't realised - Miranda Hart (2.3m followers!) tweeted about DecodeME last week:

https://twitter.com/user/status/1275334586407497734


Edit - sorry, she retweeted this but I don't know how to show that!

 

Here's an example of what I was saying. Compare the effective size of the words in the abstract on page 1, when fitted to the width of the page in comparison to the 2 columns underneath, when one adjusts the width of the columns to the width of the device. And the effective size of single columns would be smaller again without the bit along the side.

 

Just checked - she retweeted the one Sasha linked above and a couple from Sam O'Neill, the Times journo, without adding any comment.