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Does the forum have a favourite candidate gene to focus on? Could it be the basis of a seminar?

Could you expand a bit on why?

That's great that they're asking for suggestions! I haven't really thought this one through but given our desperate need for proper clinical care, I wonder if there's any kind of research seminar that could help bring a focus on the need for proper physician-led clinics to feed researchers with...

I don't trust AI to be reliable but this statement struck me as extremely well put: If someone were to write a book about the history of ME/CFS, 'Weaponised Uncertainty' would be a great title.

I can't remember if DecodeME asked about whether we had rellies with ME/CFS, including rellies in DecodeME itself, which would allow just those people to be WGS'ed?

Just giving this a bump - it's on this coming week.

Thanks very much for engaging with the forum, @LizWorthey! Great to have you here. On your above point, would it be worth trying to recruit online people with multiple family members with ME/CFS who have already had their genome sequenced via 23andMe or whatever? Maybe commercial testing isn't...

This isn't a private part of the forum - it's open to the Internet. You might want to remove your post!

I'd been wondering whether this could be mitigated by setting realistic expectations for what a consultant can offer (maybe via the appointment letter, and along the lines of @Jonathan Edwards's guidelines in the factsheet for professionals), and then I had a look at what's on the NHS website...

I hope so, because I'm finding it hard to believe that any consultant is finding that 100% of their ME/CFS patients are so difficult to deal with as to justify, in the consultants' heads, throwing all PwME under the bus.

That's extremely well put. So is that. It's a really thorough list of all the damaging strategies.

I still struggle to get over the ultra-weirdness and total lack of basic humanity of throwing thousands of patients in the bin because some of them spout woo. Spouting woo should not be a reason for being shut out of treatment, but surely these doctors don't think that all patients spout woo...

That's an interesting point in general - and it suggests that some of our symptoms are almost unique, because otherwise, there'd already be words for them. Same here - I had a sleep study showing normal results. I wonder if there have been any studies looking at polysomnography in PwME, and if...

Interesting question - I can't remember what was asked in DecodeME and whether it would allow this to be looked at.

But for a lot of us, it isn't feeling as though sleep had not happened - it's feeling as though sleep had made us ill. 'Unrefreshing sleep' to me simply sounds as though sleep hadn't done anything. I don't think it's a good descriptor for what's happening to PwME. Do you think that what...

Is feeling worse in the morning than when you went to bed unusual for a disease?

@Jonathan Edwards, does anything in your Queos model suggest an explanation for this? I think the discussion here, and the poll, really show how poorly the term 'unrefreshing sleep' describes the effects of sleep on PwME. I'd give anything for sleep that was merely unrefreshing.

I'm not sure that 'unrefreshing sleep' really describes the experience of sleep for PwME so without saying anything else, I'd like to see how we feel when we wake up in the morning compared to how we felt when we went to bed.

Hoping someone will explain the implications for those of us at the back...

I'm a big fan of not keeping your mouth shut. :thumbup: Especially when nobody else is.