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MEA website poll: Do you still drive a car with ME/CFS

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Aug 2, 2015.

  1. charles shepherd

    charles shepherd Senior Member

    MEA website poll for Agust
    Do you still drive a car with ME/CFS?

    Vote via the home page on the MEA website:

    current votes:

    • Are you still driving a car following a diagnosis of ME/CFS?
      • Yes - no change (6%, 8 Votes)

      • Yes - when I feel OK to do so (50%, 69 Votes)

      • Yes - on rare occasions (18%, 25 Votes)

      • No - but I'm keeping my license (22%, 31 Votes)

      • No - I've surrendered my license (1%, 2 Votes)

      • I've never driven or owned a car (3%, 4 Votes)

        Total Voters: 139
    Polls Archive

    NB: The DVLA is the UK government licensing authority that produces guidance on fitness to drive

    Why are we asking about car driving and ME/CFS in this month's MEA website poll?

    Firstly, because this is a question that comes up quite regularly and I am aware that people are receiving all kinds of conflicting misleading and inaccurate advice

    So I think it's important to start off by pointing out that people with ME/CFS have a number of symptoms - muscle fatigue/weakness, cognitive dysfunction, blurred vision, and daytime fatigue/sleepiness in particular - that can or will affect their ability to safely drive a car.

    And whilst a significant number of people with ME/CFS do stop driving as a result, there are others who should not be driving - even on an occasional basis.

    Driving a car if you have ME/CFS is clearly an area of personal responsibility where you have to consider not only your own safety but that of people who may be with you in the car, as well as any other road user.

    And this is something you should discuss with your GP - who should be used to dealing with queries relating to medical problems and fitness to drive.

    Secondly, in relation to insurance, it's important to check the small print in the policy where it refers to medical conditions.

    You will almost certainly find that you are obliged to inform the insurer of any condition that could affect your ability to drive - or words to that effect. This would obviously include ME/CFS.

    Failure to provide an insurer with this type of information could well invalidate your policy, especially if a claim results from something that could be linked to your medical condition.

    Thirdly, the DLVA produces very comprehensive guidance on medical conditions and fitness to drive.

    Ordinary UK driving licenses issued by the Driver and Vehicle Licensing Agency (DVLA) state:

    You are required by law to inform Drivers Medical Branch, DVLA, Swansea SA99 1AT at once if you have any disability (either physical or medical condition) which is, or may become, likely to affect your fitness as a driver, unless you do not expect it to last more than three months.

    You could be fined up to £1,000 if you don’t tell DVLA about a condition that might affect your ability to drive safely. You could also be prosecuted if you have an accident.

    It is the responsibility of the driver to inform the DVLA.

    It is also the responsibility of doctors to advise patients that medical conditions (and drugs) may affect their ability to drive and for which conditions patients should inform the DVLA.

    The DVLA issues very specific guidance on a large number of named conditions and in some situations (e.g. epilepsy) includes restrictions on the ability to drive. Interestingly, ME/CFS is not included in this list.

    However, problems such as excessive sleepiness, cognitive dysfunction (e.g. where this is affecting visual attention, causing easy distractibility or ability to multitask) and medication (e.g. antidepressants) are covered.

    Detailed information on fitness to drive from the DLVA can be downloaded from the DVLA website:

    Last edited: Aug 2, 2015
    rosie26, Sasha and Valentijn like this.
  2. msf

    msf Senior Member

    No, I drive it with my hands and feet, it´s much easier.
    merylg, Valentijn and duncan like this.
  3. duncan

    duncan Senior Member


    How my car contracted ME/CFS, I will never know.
    Snow Leopard, SOC and Valentijn like this.
  4. msf

    msf Senior Member

    It must have been a ´hit and run.´
    Hutan, Valentijn and duncan like this.
  5. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    If we were to surrender our licence, have it rescinded by DVLA or find it impossible to insure a car, wouldn't this be a hindrance to our 'pragmatic rehabilitation' back into work?

    'Humour' aside -be careful what you you wish for in terms of the medical profession's views on the 'seriousness' of ME/CFS.
    ahmo, MeSci and maryb like this.
  6. snowathlete


    I don't agree with some of this.
    Me/CFS is not "obviously" a disability that you'd have to inform your insurer about. Or the DVLA. There are no doubt cases where it would be but your statement seems to imply it is most or all, and think the opposite is true.

    I have moderate to severe ME/CFS, I am disabled enough to have a blue badge, but my driving is up to standard. Many people with all kinds of disabilities and conditions drive cars safely.

    It isn't even just people with chronic illness of course, a person may be unsafe to drive if they have a cold. Or may become unsafe to drive if their cold got worse - I wonder how many calls the DVLA get a year reporting a cold that may get worse. It is an ongoing responsibility of every driver, on a per-drive basis, to assess if they are in a state to drive or not. As you point out many drugs may affect a persons ability to drive, but again, you don't report to the DVLA every time you take a painkiller, hayfever tablet or antibiotic (and no one expects you too!); people drive on drugs like these all the time and it is the responsibility of every drive to consider their fitness to drive in light of that, and applies to everyone (we aren't a special case). The DVLA statement you quoted has to be applied with reasonableness and common sense.

    This poll is not going to answer whether people are not driving due to their illness or some other reason, so it will be important not to read into the answers and reach incorrect conclusions. Neither of the "no" answers can be used to conclude that a "significant number of people with ME/CFS do stop driving as a result" for instance.

    I am not against DVLA guidance being issued for this disease as it is for many others, but I would not like that guidance to be misinformed by a poll that seems to have been constructed based on a faulty viewpoint.

    The issue with insurance advice also seems to be looking at it from a certain viewpoint and such advice may not be warranted and in its current form may lead to people contacting their insurance provider when they needn't which nonetheless could have severe long-lasting implications, when the person is actually perfectly well enough to drive to standard.

    As with other debilitating diseases, access to car transport becomes a lifeline for many, and no driver wants to find additional obstacles in the road in front of them when they are fit to drive. This needs to be redone with more care in my opinion.
    brenda, Hutan, ahimsa and 7 others like this.
  7. Raines

    Raines Seize. Eggs. I don't know. Zebra. Eighties.

    Just thought I'd quickly share my driving story, I was already ill when I learnt to drive and passed my test. I was at that point safe to drive.
    However I have now not driven for years and wouldn't dream of getting behind a wheel, my illness is worse than it was and now I am not capable drivIng safely. I still have my licence.

    It seems to me that with an illness like this where we all have different levels of fatigue and symptoms some of us will be safe to drive and other of us won't. We have to individually be honest with ourselves and decide if we are safe to drive or not. Selling my car was hard and sad, but it was the right decision for me. I know someone else with ME who drives occasionally, she is a perfectly safe driver.
    WillowJ, SOC, MeSci and 7 others like this.
  8. maryb

    maryb iherb code TAK122

    I totally agree with @snowathlete. Why on earth get involved in surveys like this. Any chronic illness can cause people to become unwell quickly eg. diabetes etc. that's all we need to have further restrictions imposed on us.
    People who know they are not fit to drive and do so will whatever their illness is. I think they are in the tiniest of minorities, please concentrate on things that can actually help us please.
    As soon as I can sort my dizziness and vertigo out I will be driving again that's for sure.
    justy, snowathlete and Scarecrow like this.
  9. Aurator

    Aurator Senior Member

    Charles, I think it's good that the MEA has taken this matter in hand. However, it's quite a complex one, and the DVLA do not make it at all clear what the responsibilites and privileges are in all cases of persons with a health condition.

    A recent call I made to the DVLA's help line gave me the answer that if my condition is not on their list (ME/CFS isn't, as you say) and I personally didn't feel the condition affected my ability to drive or was likely to in the future, I didn't need to formally notify the DVLA of anything.

    What muddies the waters considerably is that the information given out on the DVLA's own website is patently self-contradictory.

    On the one hand we have what you quoted above:
    "You are required by law to inform Drivers Medical Branch, DVLA, Swansea SA99 1AT at once if you have any disability (either physical or medical condition) which is, or may become, likely to affect your fitness as a driver, unless you do not expect it to last more than three months."

    And then we have:
    "You must tell DVLA if you have a driving licence and

    • you develop a ‘notifiable’ medical condition or disability
    • a condition or disability has got worse since you got your licence
    Notifiable conditions are anything that could affect your ability to drive safely.
    Check if you need to tell DVLA about your condition".

    On a new page, linked to from the last words I've quoted, we find:

    "You may need to tell DVLA if you have a driving licence and one of these health conditions. Having some of these conditions means you need to fill in a questionnaire or form".

    There then follows the list of conditions, in which, as you say, ME/CFS does not feature.

    Sadly, this isn't the only example of self-contradiction to be found on the now distended and verbose gov.uk website.
    justy and Valentijn like this.
  10. lnester7

    lnester7 Seven

    I use pillows in the bottom of the arms so I do not have to get tired burning feeling from arms. Drive 10-2 style. I do not drive longer than 30min drives.
    Valentijn likes this.
  11. Valentijn

    Valentijn Senior Member

    I've never driven a car, aside from during some lessons from my mum. I have driven my mobility scooter when I wasn't up for it, but had someone walking with me, and I mostly counted on him to know when to cross the street and bike lanes. But I had no choice really, since his back was injured and he couldn't sit down to drive, nor carry much of anything, and we needed to buy food.

    There's no way I'd drive a car now, even if I had a license. My attention constantly drifts when I'm in a car, and I couldn't handle using the relevant muscles for even a 10 minute drive.
    MeSci likes this.
  12. brenda

    brenda Senior Member

    I just don't drive on days when l am exhausted. I also avoid busy times. But apart from that, my driving is good and l don't get complaints from other drivers.
  13. charles shepherd

    charles shepherd Senior Member

    The accompanying guidance and information relating to this MEA website question on driving has been prepared to try and explain the situation regarding personal resonsibility/judgement and what the law actually says

    It has also been worded to acknowledges the fact that:

    1 We receive a constant flow of enquiries about the legal position on driving and ME/CFS here in the UK and a significant number of people believe that there is no need to inform the DVLA or their insurance companies because ME/CFS is not on the DVLA list of (medical and psychiatric) conditions where there is specific guidance and/or restrictions imposed. We have a duty to provide accurate information on the legal position.

    2 On a professional basis I have seen a number of people with ME/CFS, or been a passenger in a car driven by someone with ME/CFS, where I have either told the person that they should inform the DVLA of their situation or indicated that they should not be driving - mainly because of their level of cognitive dysfunction

    3 Fortunately, there are very few reports in the press relating to accidents involving someone with ME/CFS. Exactly how many accidents occur that never get reported is impossible to calculate. But if someone with ME/CFS claims they have significant cognitive dysfunction in relation to an application for a DWP benefit but continues to drive and does not declare this fact, and then has an accident where they failed to take appropriate action because of cognitive dysfunction at the time and caused an accident, they could well be in a very difficult legal situation.
    elliepeabody likes this.
  14. charles shepherd

    charles shepherd Senior Member

    Yes, I agree that when it comes to conditions that are not named and linked to specific guidance or restrictions the DVLA could do better

    On the whole our feedback is that most people with ME/CFS who have contacted the DLVLA in relation to ME/CFS have been treated in a helpful and common sense manner
  15. charles shepherd

    charles shepherd Senior Member

    We've restarted the poll because we left a pretty obvious question out yesterday.

    You can find out at www.meassociationorg.uk and then scrolldown a bit

    MEA website poll for August: Are you still driving a car with ME/CFS?

    Votes so far:

    • Are you still driving a car following a diagnosis of ME/CFS?
      • Yes - no change (10%, 4 Votes)

      • Yes - when I feel OK to do so (35%, 14 Votes)

      • Yes - on rare occasions (10%, 4 Votes)

      • No - but I'm keeping my licence (23%, 9 Votes)

      • No - I've surrendered my licence (8%, 3 Votes)

      • No - my licence was revoked by the DVLA (0%, 0 Votes)

      • I've never driven or owned a car (14%, 6 Votes)

        Total Voters: 40

        Explanatory notes:
  16. *GG*

    *GG* senior member

    Concord, NH
    Will get back to this thread.

  17. charles shepherd

    charles shepherd Senior Member

  18. jimells

    jimells Senior Member

    northern Maine
    Anybody in the US who surrenders their license for any reason is in a world of hurt, simply because it is Uncle Sam's defacto national identification card.

    Unbelievable as it sounds, a few years ago I was forced to renew my license simply because I could not file bankruptcy without it. Fortunately the lawyer helped me with the process, because I couldn't find my birth certificate, and I could not renew the license without that piece of paper, along with a bunch of other papers, none of which have anything at all to do with driving.

    Now this is the best part of the story. I had to prove my identity in order to get my birth certificate in order to get a new drivers license in order to go bankrupt. Hmmm, what to do... I still had my expired license with my picture on it so the lawyer photocopied my expired license and mailed it to New Hampshire (where I was born) along with the required fee. So an expired license is good enough to get a birth certificate by mail but not good enough for a bankruptcy trustee hearing, as if people are filing bankruptcy in someone else's name.

    Kafka thought he was writing satire, but in the US, it's viewed as a bloody instruction manual!

    p.s. A few months before the bankruptcy business I was stopped for an expired vehicle inspection sticker. I was expecting a huge ruckus, but the cop never noticed my license was expired, and his computer never flagged it. He only gave me a written warning and sent me on my way.
    Indigophoton, Valentijn and MeSci like this.
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    Am I really the only person who has had to stop driving due to insufficient money? It makes me feel like a particularly disadvantaged, isolated member of a disadvantaged. isolated group. :(

    Time after time I have to cope with people saying things like "You can get this item in x shop", which is on the other side of town - thus unreachable for me. Or I see a nice piece of furniture in a charity shop, or one offered on Freecycle. I have to go without, due to having no car. If a cat falls seriously ill, I can't rush him or her to the vet, but have to phone round for a taxi or a lift, which is dreadful. Then I have to try to cope with aggressive driving and/or air 'fresheners' which make me ill. I have to walk up a steep hill and get a bus to go to the doctor's, taking the best part of an afternoon. I can't go for a nice drive to the moor or the beach.

    I am baffled that almost everyone else here seems to be able to afford to run a car. I haven't even been able to have my heating on some winters.

    I agree with what @snowathlete says about the ability to drive varying over time. Most of the time now I don't think I'm capable, mainly due to concentration problems. Some days I feel that I might be OK for short distances, but might deteriorate while out, and be unable or unsafe to drive home. If I felt unsafe, I would only drive if there were no reasonable alternative. If I could afford it, which I can't.

    I would be happy with just a decent level of public transport...
    jimells and AndyPandy like this.
  20. Aurator

    Aurator Senior Member

    I'm not sure what you find baffling. We're no less likely to be in different economic circumstances from one another after the illness than we were before it, though I'd imagine everyone's economic situation is comparatively worse than before.

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