The money would mean nothing to me. Make it a mobility scooter and we'll talk.
I know!... i thought when reading it that i would have chosen 'none of the above' if faced with choices between tasks which would have caused me significant problems, for such trifling reward.
The comparison with HVs for a reward based task to determine effort 'preference' is absurd, since HV will receive no
punishment/negative consequence for doing it, they will have no
downside to doing any of it. How can you possibly make a comparison of preferences - HVs are not a valid control group for such a task.
You may as well offer a bunch of people with (non fatal) peanut allergy a choice between foods with no traces of nuts, and foods which might have a trace of nuts, & offer them some poxy utterly trivial reward for eating them.
And then, as a control to compare them to, offer the same choices to people without nut allergy.
And then call that a comparison.
I can just imagine their response 'ah but you dont have allergy, you only
think you have'.... we may not have allergy but we do have an abnormal response to activity. Isnt that what you're supposed to be investigating?! I mean Duh!... Its not that a person with ME will always think 'oh i cant possibly push a button that many times. Its that
even if we can push it that many times, the payback for doing so will be a problem.
That's the problem you're supposed to be investigating surely? not making utterly specious comparisons between people who have no issues
after activity & those who do.
And thats without all the other issues with it.
Its shocking.
If there had been some good science along with this, it could have worked out. But the lack of a serious attempt at researching this while at the same time featuring this complete clown nonsense makes this study as close to a deliberate insult as it could get. In some ways it's actually worse than PACE because despite supposedly being a serious and deep study of a serious disease, the authors chose to prominently display a ridiculous analysis of a single 15 minute task of zero validity in a way that seems crafted to be quotable, and it sure has. The NIH didn't just let us down here, they dropped another anchor on our heads. For shame.
I'm afraid I agree, i'm devastated by it.
This is going to affect
everything... if its now supposedly biologically proven that we only 'think' we cant do things, or only 'think' we will pay a price for doing them, then the carer who is asked to fetch something at the end of a long hard day, when it appears the caree could do it for themselves, will get shirty and may not do it, leading to possibly a major PEM episode for the caree.
Its the doctors receptionist who gets angry & wont make accommodations because 'you can do it there is nothing wrong with your muscles we cant accommodate effort preference', & the GP that wont make a home visit.
It's the ward sister/Matron in the hosptial who wont put the ME patient in a side room or near to the bathroom, because, well "it'll do them good to do some exercise walking up the corridor their disability is caused by effort preference that leads to deconditioning, they need to be encouraged to do more... "get up off the floor you silly woman, stop making such a fuss, you are perfectly capable of walking to the loo if you just push yourself, I cant be pushing you in a chair, I've got patients who are actually ill to look after".
Its the plumber who wont prioritise your job because when you say that if your upstairs toilet isnt working you will have to sleep on the settee downstairs because theres no way you can manage the stairs during the night - because he's read about the "mismatch" in the daily mail.
Its the parent who says 'come on you can do a bit more, of course you must go to soccer practise, stop attention seeking!'.
Its the continuing battle against derision, abuse, and neglect that has just be reinforced & made harder. I pity anyone who has to have a benefits assessment after this.... "Claimant says is unable to _____ but science has proven this is a mismatch between what they think they can do and what they actually can do, therefore i assess them as being able to do it without difficulty".... claim denied... destitution ensues.
Its just everywhere, in everything, a massive battle. Its having to explain to
every health professional you see why you're in a wheelchair when all you have is "fatigue" - ''you need to get out of that chair its been proven now that deconditioning is the cause of your disability!''
It's like going back to 2011
Despair
Edited to add: i know everyone on S4 knows that, but i decided to get it off my chest anyway because there will no doubt be people reading who dont undersand why we are so up in arms about it all... people who think something akin to "there's no pleasing these people we just proved the biological basis for CFS, you should be thrilled!" We are not thrilled by poor science.
Edited - minor edits for clarity in 1st paragraph, & to change words written in Upper case, as they seem like i am yelling.
