"One problem that can arise from diagnosis is that people can gain disability benefits based on self-reported symptoms."
The UK state benefits system functions mostly on a means-tested benefits basis whereby financial need for benefits is assessed by strict rules - and the only disability benefits that are not means-tested at the moment are Disability Living Allowance (DLA) (being replaced by PIP now) and Employment and Support Allowance (ESA) Support Group. Which means that many people with ME (especially those who are not severely ill but too ill to do any work) and who have partners in work or their own savings/means to support themselves - so don't qualify for means-tested benefits - get
ZERO POUNDS STERLING in benefits (disability/sickness and other benefits) - and there is not even automatic relief for the sick/disabled on things like dental care or medication prescriptions.
If someone has a working partner and gets assessed for ESA and considered to be able to prepare for work some time in the future and is placed in the work related activity group (WRAG) of ESA, they will get 12 months of very low payments (not even minimum wage equivalent).
After the 12 months, they get nothing - possibly for decades. (though at least these years are counted towards qualifying for the state pension)
If that person is e.g. housebound but able to look after themselves and cook a meal for themselves, they will not qualify for the DLA/PIP care component.
So they will get nothing in this disability benefit.
If that person is able to walk short distances - more than the threshold for DLA/PIP mobility (which I think is about 50 meters) - they will not qualify for DLA/PIP mobility component.
So they will get nothing in this disability benefit.
The argument that people 'are in it for benefits' doesn't hold water for many PWME who have working partners - in fact, if their partner doesn't earn much, those families could be worse off financially than as if they were entitled to means-tested benefits. And usually significantly worse off financially than if they were able to work.
It would be interesting to know what percentage of PWME get ZERO in disability and other benefits in the UK and yet are too sick to do any work. I suspect the number is not negligible.