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To partially answer my own post, the data analysis plan says they can perform analysis on co-occurring conditions with “stratum of at least 1000 samples”. So the mild/moderate vs severe comparison may be possible. It would be really interesting to know if any genetic signal is strengthened or...

Or perhaps those who had poor childhood experiences were also living in poor condition which impacts their health? As far as the pandemic went all those who were able to get their wages paid, work from home while hanging out in their gardens no doubt had very different experiences from those...

I have been thinking about the data analysis plan again in light of recent discussion of studies focussing on more severely affected people. There are plans for all sorts of analysis, including stratified analysis for things like sex, co-occurring conditions, onset, etc. but there’s no mention...

Definitely. And that alone could be really useful. I know this forum has helped me be more confident and sure of myself. Having published literature back it up is useful. It’s so easy to be isolated and think you must be the only one thinking or wanting xyz, especially with such an isolating...

Yes, looking over the paper there seems to be a lot of similarities outside of these very specific differences too. For instance: I like the questions @wigglethemouse has been been raising. Hopefully things will make more sense with greater context and information, maybe even after...

An article on mitochondria transplants https://knowablemagazine.org/content/article/technology/2025/mitochondrial-therapy-to-treat-damaged-organs Here’s the relevant paper https://pmc.ncbi.nlm.nih.gov/articles/PMC11615905/

I’ve been back over the webinar and parts of the paper and it certainly raises lots of thoughts or half formed questions, particularly in light of the paper Jackie contributed to with @Jonathan Edwards and Jo. That would seem to fit the severe or ‘over sensitive’ ‘over reactive’ immune subtype...

@Jonathan Edwards would the elispot/co-culture experiments proposed be possible on already collected blood samples, like those in the CureME biobank? Those are what Jackie was using for previous studies of T cells iirc, but I think they were using flow cytometry and I have no idea about these...

I assume it would just depend which nerves/cells/bits are sensitised. There is a great deal of variation between us. So I wouldn’t expect there to need to be a clear correlation. I didn’t think I had any medication sensitivities but then found some seem to set me off. Some seems like a more...

Some may not feel they need it but I would welcome advice. There are parts I see being easy/natural. I’ve recovered from illness that has reduced activity significantly for many months before. But other parts I see being less easy. And advice from an expert would be useful for me whatever. I’m...

A bit late to this but some thoughts… It’s a tricky one, overall I like the approach others laid out about sticking to the science being presented. Part of me would like to take things head on. The history is important in terms of context, but perhaps only for those having to deal with people...

I do enjoy Poirot :) (Although the audiobooks these days)

I’m obviously not happy that the plan is so late and keeps getting pushed back. But perhaps an alternative angle to consider is once we have DecodeME and understand the NHS 10yr plan we’ll be in a much better place to say what works and what doesn’t. We will be able to better push back against...

Absolutely. I’ve also experienced both severe depression and severe ME/CFS and see them as starkly different experiences. I think that’s how I was looking at it too. Seeing family or knowing people with various conditions which affect them intellectually and irreversibly in what to me feels...

The use of unpleasant was me. I will often classify experiences vey broadly as pleasant or unpleasant. I suppose a third option would be neither.

Yeah I see that. And mention of the hypothalamus is an interesting one. Certainly what I’ve been experiencing over the last few weeks and usually do when bad is on top of fatigue all around thermoregulation, hear rate, sleep, appetite, I notice shivering control is in there too which makes me...

The intellectual, cognitive or whatever you want to call it impact can be huge. Far far more than making simple mistakes. It’s a significant symptom with associated impact and can be extremely unpleasant. Brain fog is a completely inadequate phrase to describe it at its worst. And it’s...

I’d never heard of this. But weird muscle ‘tremor’ or ‘shakiness’ that gets worse when moving is something I get when particularly bad. Quite common for me in summer. I was lying there watching my muscles in my legs move in little waves just a couple of days ago. And discussing nuances and...

Thinking about this paper and the presentation @wigglethemouse highlighted in the context of the expanded T cell populations and if how expanded they are correlates with severity. Haven’t got much further but would be interested in others thoughts.

Definitely deserving of badges and t shirts It shows how long these things have been in the making and how various people from the community have been involved and influenced over the years doesn’t it?