ME/CFS and DLA…

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.

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7 thoughts on “ME/CFS and DLA…

  1. I totally agree with everything you say. I have been going to my GP’s for roughly 10-13 years with muptiple symptoms and it was just today they told me they are 99% sure I have M.E. I have been tested for Lupus, M.S, Polymyalgia Rheumatica and told by members of my family that I am fine and its all in my head. I think now I need to learn a lot more about it and how to manage it.
    Re: DLA I am on it already due to Degerative Spinal Desease and I have notified them of change. Not sure what will happen now.

    • Hi Michelle,

      Sorry for the delay – I’ve been offline for 5 weeks, so I’ll drop you an email with some info about ME.

      Regarding DLA, very little should happen. You may even get more money from them (but don’t hold your breathe!). Hope you made it clear, though, that your ME is as well as DSD. It should be obvious, as they’re entirely different, but it pays not to take anything for granted with the DWP!

      Ron.

  2. my name mike can you please tell if CFS is the same has ME. only my doctor say its not .as i have CFS i can not walk very weak leg and the rest that gos with it . thanks mike

    • In the eighties,in the UK it was called ME and in the US CFS – both conditions were identical.

      Then the British medical profession invented a condition, which they called CFS, but which focussed mainly on the fatigue aspect, and later went off in the psychiatric/psychological direction we’re all to familiar with now, and pretty much sidelined the rest of the symptomology.

      Your GP is right, CFS is not ME, but in this country, if you present with ME, it’s what most doctors will diagnose it as.

      The doctor who diagnosed me was also a professor engaged in an ME research programme at Liverpool University (before they closed it down because “no-one dies of ME” and it was too expensive), and I was diagnosed, verbally, as having incurable ME. I was also enrolled in his ME research programme. However, in his report to my GP, and in the literature he gave to me, I have CFS.

      However, no matter what you call it, most doctors don’t believe in it, and treat it as a mental illness with physical features – which is total bollocks of course. And the DWP class CFS as a “psycho-social” illness, which is why so many people with ME have so much difficulty with benefits.

  3. Hi Ron, I have had very similar experiences. It took me many years to finally get diagnosed. My specialist diagnosed me as having functional somatic syndrome incorporating fibromyalgia and chronic fatigue syndrome. I too used to be a keen fell/hill walker in the lakes but now i am unable to enjoy those activities anymore.
    I already receive d.l.a for my depression and am thinking of applying for more d.l.a as my health condition has seriously declined.
    Can the d.l.a department reduce my d.l.a if i ask them to look at my claim again?

  4. Hello

    A very interesting article, not least because I was turned down for DLA for the second time today.

    I’ve gone from working full time, socialising all the time, training in my spare time in classical singing and living in a beautiful house by the sea to having to move in with my parents in the east end of London and take my sisters room while she is at Uni.

    Would I really give all that up if I wasn’t immobile?!?

    Eugh…

    I’m too tired to appeal but I know I should.

    (On the plus side, my GP was fantastic when I was going through the diagnoses etc)

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