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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?

Found this old thread looking for something else. Finding the name suggestions of DecodeME and SequenceME which are now actual projects gave a little bit of a smile.

When bad or in PEM I often have coordination or accuracy problems, just become clumsy, and I think others say similar, I guess this could be a response time thing?

My brain went straight to UTI and I got very confused

Sometimes. Runny nose, sometimes eyes, definite airway iffiness. Maybe more allergy like than ill like? Like I think you imply, there are different PEMs. Some more me are much more dry mouth/nose/etc. Or maybe different phases, balances of symptoms or severities or something. But yes, what you...

But also from the same paragraph in the paper I see what you mean though @Utsikt the wording may be a bit weird and almost feels contradictory in places. They seem to have confirmed it’s safe and well tolerated, but be more vague on the second part of it is a disease modifying treatment. Seems...

That’s the big question for me. Quite a few of us covered the barriers in this thread

Looks very positive. I wonder if there’s a way for S4ME to get involved?

Well the return went smoothly, printed out a label, someone dropped them off for me at at a courier pickup at a nearby shop, refund in full a few days later. So worth buying direct from Bose as @JemPD says.

Thanks for all the great insight @DMissa and @chillier we’re lucky to have you all and this knowledge on this forum. And great question to prompt it @wigglethemouse Maybe one day some of us will recover enough to if not make great scientists then great lab technicians.