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One of the responders had ME/CFS for 35 years iirc so it's unlikely she was under 40. Also I don't think the NK threshold for response, if real, was particularly high for the average population, I seem to remember non responder counts were particularly low. But I could be misremembering.

Surely while 'the answers' implies an answer biomedically, 'the solution' implies a solution to the biomedical/treatment issue AND the care and support crisis, therefore negating the need for a forth line? I understand the need to get something about care in there but if the purpose is to draw...

If as Chris Ponting has talked about, a GWAS was actually done 15 years ago, and findings properly followed up on, we might all be living very different lives.

Yeah I think you're right there. In scientific circles solution will probably come across as JE has used it. I think my concern is that a broader audience might not understand that it means 'understand enough of the mechnism that we can design effective treatments'. But other than outright...

I like this, but think it should be millions of lives for clarity. Also is solution the best word considering its...20th century history? Just throwing it out there but other than that I think this is a powerful way of putting it

I just wonder if finding 'an answer' is only understood to mean finding breakthroughs that lead to treatments if you understand the language used around it by researchers etc on here? But maybe looking for treatments sounds a bit too much like a phoenix rising type approach I don't know.

Should it be 'there are no treatments'? It fits better with 'help us look for them'

I was just thinking this. I think it is much more powerful this way. A succinct mission statement. I agree that support is important (God knows I need it!) But from a messaging point of view I think it's better and more focused this way.

I don't remember this from when I studied the WWI poets in sixth form. Just looked it up, its very affecting.

Maybe it should be something like help us find them and help us campaign for support for people with ME/CFS in the meantime? So it's like an action we're doing. The wording isn't quite right but still.

This is true. Which raises the question of the preffered term here. Maybe 'people with ME/CFS need support...' is the way to phrase it.

This is a very good point.

Possibly relevant discussion

Neurodivergent adults are overrepresented in every ME and LC space I've been a part of. So it's not just the kids. Might be a coincidence but...

Saying or writing 67 is a meaningless meme that children and teenagers find hilarious at the minute for some reason. Or maybe it's already passe I'm not sure.

But it does - they put effort into convincing you of it. It took my GP six months to dismantle my certainty that my symptoms were not mental health related. Even if gaslighting is not the exact right term, it is a form of manipulation that does unspeakable damage to pwME, even leaving...

Because that doesn't encapsulate the experience of having your doctor use underhanded and manipulative language and techniques in order to trick you into accepting a bogus psychobehavioural/biopsychosocial framework of your illness, one that they don't necessarily believe themselves (doctors...

I think because a) pain is something that is easily understandable to the average person, unlike PEM, and b) many people with fibro who don't suffer from PEM can work, so people are less likely to decide they're lazy. But it is still a target for the psychobehavioural crowd. And many people are...

I understand this hesitance, but I feel that in many cases of medical gaslighting the doctor is either saying whatever will get them out of the office quick enough, or convincing them in a framework like functional or mind body that is not the framework they use in their interactions with...

The next step is SequenceME. Even a fool could see that. If they have no intention of doing that I doubt they have the intelligence to fund good quality smaller projects. The level of dishonesty in these responses [edit: the government's PMQ responses, to be clear] is sickening.