The question of why ME/CFS sufferers have trouble getting DLA was raised today, so I thought I’d try to address it.
The biggest problem is that ME/CFS is almost entirely subjective, and diagnosis is based on the symptoms plus the patient’s medical history. There is no accepted diagnostic test, and no symptoms that specifically confirm the diagnosis. It is, therefore, very hard to prove, when claiming benefit,** you’re actually sick, despite the fact that you may be barely able to get out of bed. This isn’t helped by the fact that, while the World Health Organisation class ME/CFS as a neurological illness, the dishonest pricks at the DWP class it as “psycho-social” when there’s not the slightest evidence to support that. FFS, people are dying from ME/CFS – how the hell can it be a psychological problem?
** I went from being a superbly fit (within the limits imposed by my respiratory problems), cyclist, backpacker and rambler to someone who could barely get out of bed, and who walked with the aid of crutches, all in the space of a year – and yet even my own bloody GP refused to believe I was sick, and spent years, when they weren’t telling me I was imagining things, trying to prove I was mentally ill. It took me ten years, almost to the day, to get a diagnosis of ME/CFS. Bitter, me? Too ‘kin right!
Then there’s the problem of doctors who, in the face of 55 year’s worth of evidence since the first documented outbreak among staff at the Royal Free Hospital in 1954 – some of whom are still sick! – refuse to accept that ME/CFS exists at all.
The ME/CFS community, especially here in the UK, is beset by quacks and charlatans all claiming to be able to be able to cure ME/CFS – very often by getting the patient to talk it out, or change the way they think. This, in the minds of the DWP trolls, just reinforces their view that it’s all psychological, because you can’t bloody well cure a physical illness, which ME/CFS quite clearly is, by those means. It’s bullshit.
Occasionally, ME/CFS sufferers are their own worst enemies, because in desperation they latch on to the most idiotic, and sometimes dangerous theories that appear from the realm of quackery – the most obvious one being unfounded food intolerance (NB – VEGA testing does NOT work!) – plus an assortment of utterly useless electronic and magnetic gizmos, that claim a lot and do nothing whatsoever. You bring stuff like that into a DLA medical examination, or a tribunal, and you’re probably doomed.
The major ME/CFS charities in the UK provide information on claiming benefits with DLA and, specifically, claiming DLA (it’s certainly possible to get DLA with ME/CFS – everyone I know with the illness is getting it – we just have to work a little harder than someone with an obvious disability or illness).
Action for ME has free benefits information sheets available as PDF download on this page and a lot more free information on this page too. Those which are available free online should be right-clicked and saved as a normal PDF file (If you don’t know how to do this, post a comment, tell me what browser you use, and I’ll post the details).
The MEA’s information is available at cost from their shop; download a PDF order form here. Their guide to claiming DLA, for example, is £3
There’s a page on my website that deals with quackery and ME/CFS – not just my opinion, there are supporting links to the excellent Quackwatch website (please let me know if any links don’t work). The link to my new blog brings you back here.