CFS/ME how viewed in UK??

Discussion in 'Fibromyalgia Main Forum' started by peachrie, Sep 18, 2006.

  1. peachrie

    peachrie New Member

    Hello-
    i was wondering if CFS/ME are synonymous in UK, and how they are both viewed by lay ppl and medical ppl alike?
    do people take it as seriously as in the US?

    thanks! godbless
  2. KelB

    KelB New Member

    Hi peachrie, I'm in the UK.

    CFS and ME do seem to be used interchangeably in the UK, although there is a movement to separate the two.

    The government and NHS view at present, is that CFS is a psychosocial condition. Treatment (if you can find it and then access it) is with Cognitive Behavioural Therapy designed to correct your "incorrect illness beliefs" and (if you're very unlucky) Graded Exercise Therapy. When these don't work, they can then blame the patient.

    There are small pockets of common sense and thankfully I live in one (East Dorset). I have a local NHS Chronic Fatigue Unit, which offers CBT as a series of practical coping strategies and doesn't tout it as a cure. That has actually been very useful for me. If you're offered CBT, research what you're being offered and go in with your eyes open.

    The psyhcosocial model is losing ground amonngst a minority of the medical community as two independent UK research teams have found genetic-level changes in CFS patients. This makes it more likely that CFS is actually physical. Unfortunately, research is not yet complete and when it is, will doubtless be discussed and dismissed for years by the establishment.

    Basically, it is cheaper to treat CFS as "all in the mind", so that is the view that will persist.

    On the plus side, I've seen (and heard) many positive articles on CFS on the BBC in the past year. Even to the point of giving a sympathetic and sensible storyline in one episode of "Doctors".

    However, I believe that the general public's view of CFS is that it's just a bunch of people being a bit wet, who should pull themselves together.

    Actually, I think that sums up the wider medical view, as well.
  3. peachrie

    peachrie New Member

    thanks! but if i say i have ME will it be more respected than CFS?
  4. KelB

    KelB New Member

    I don't really know peachrie. I've only had mine for 2 years and I've always called it CFS. I've been asked "Is that the same as ME?" and when I've said yes, people have just accepted it and left it at that.

    I have to say that amongst my friends, family and work colleagues, I've had a very positive response.

    I've only met one person who has clearly not understood and responded with a sneery "Yeah, I get a bit tired and confused sometimes as well". When I explained that I was once so "tired and confused" that I ended up driving on the wrong side of the road, he looked a bit sheepish and hasn't mentioned it since.

    I also have trouble with a hypochondriac boss, who is determined that he has it, despite clearly not having it at all (overworked, overtired and overstressed, yes - CFS, no!). He questions me on his latest "symptoms" with boring regularity, but has never dismissed it.