Snowdrop
Rebel without a biscuit
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From my own personal perspective, I'm not sure it's that clear cut.
What I mean is that in my own personal experience, I first started symptoms of what is now full blown severe ME/CFS that now keeps me in bed 23 hours a day in the late 80s. It was very mild, and intermittant and eventually turned moderate around the millenium. Then severe very suddenly in recent years.
So for me, I suspect if I looked at all the different criteria - London, Canadian, Fukada etc, although I've not actually done so with that aim in mind - I may well find that I started off fulfilling the 'wishy washy' mostly fatigue criteria and now have ended up following (edit -fulfilling is what I meant sorry) the more 'strict' criteria than the 25% Group Statement would prefer the Collaborative to follow.
The unpalatable truth for me personally is that at every stage of this illness (which has fluctuated rather than progressed when I was experiencing but with hindsight maybe it's progresed more than fluctuated) - I've had to give stuff up, and that at the time, within the relative scope of my knowledge and experience at that time, where I found myself after I gave something up as compared to where I found myself after I gave it up - the emotions and impact on my quality of life were the same.
It's going to sound odd, but with hindsight, the impact of me only doing 2 fun things on a day out instead of 3, has actually generated the same reactions in me, as say, last year me eyeing up the glass of water with a straw 2 inches away and wondering how to best use the energy I wasn't sure I even had to get straw to lips and water to mouth. To an outsider, they're two very different things, but in the context of one's own abilities on any given day relative to other recent days, they're the same.
So from my personal point of view and I do realise that it's probably rather an unusual one (I blame the prescription drugs ) - keeping a 'broad church' and being inclusive of all those dumped in the bucket of 'ME/CFS' is more helpful than it is a hindrance?
I absolutely understand what people have said above on both sides about influence in reply to my original posting, but the one thing that keeps tripping me up is, there's going to be a lot of dead ends before significant progress is made (and I'm no scientist so am willing to be wrong) so I genuinely don't understand how it helps our community either as specific subsets or a whole to say - well fatigue isn't ME so therefore people with those symptoms should be excluded.
Don't you need to be able to do comparisons between different 'things' (sorry I don't have the right language) - symptoms or molecules or mitochondrial wotsit behaviours and they way they either are similar or different to determine whether or not a hypothesis has value?
And being entirely selfish, I do feel tired. A lot. Even though I'm not doing anything by normal people's standards. It's one of my symptoms. I'd like it controlled or fixed. The same way I'd like everyone elses' personal 'collection' of symptoms to be controlled and fixed.
So if I'm in a minority and there's more people with more severe/ debilitating symptoms that need to be helped first, fine, I'll wait at the end of the queue, but I don't want to be slung off it entirely?
And to me, as someone who doesn't know the history or the politics, it does feel a bit like that's what people are saying, that fatigue symptoms muddy the waters and need to be excluded? (I hope I've just misunderstood though!)
Or you could think of it as: researchers who use the very loose criteria use it in order to justify that you're a head case. One who doesn't require disability benefits. And you're in need of exercise therapy and assistance in talking you out of how you feel.
Including mildly fatigued people in their research and then offering their 'effective treatment' on the full scale of ME/CFS patient cohort.
The problem is that what's being done by this group is not proper research. There are other threads here that discuss in detail why that is so.