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

[rosie26]

I don't drive and there was no way I would have been able to in my severe years. Even now, 15 years from severe onset I still have to be careful to turn my head slowly.

I think driving should be left up to the patient to decide. Everyone is at different levels. Also, because of the fluctuations one can have a window of opportunity where they are able to drive for a half hour to a hour or longer safely.

 

[Raines]

Am I really the only person who has had to stop driving due to insufficient money?

Money was a factor, I'd have loved to keep my car in hopes that I'd feel up to driving again, but insurance, tax, mot etc, were all eating through my savings.

If I did find myself well enough to drive I would now be unable to afford to run a car.

Interestingly when talking to the insurance company (years ago now) about my illness it didn't seem to make any difference. The insurance guy on the phone had a brother with something similar so checked that it wasn't costing me more to say that I had ME. This was years ago and so may not be true now.

 

[snowathlete]

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.

I appreciate you have to be very careful when giving legal advice as an ME charity. Nevertheless, I think this is a bit of nonsense if you're saying you have to inform the DVLA if you have the disease - is that what you're saying? You do not have to inform the DVLA or your insurance company because you have ME/CFS. You only have to do so only if it affects your ability to drive safely. And that depends on the individual case.

If you personally see someone with ME/CFS, any other disease, or in perfect health who can't drive safely then by all means tell them to report themselves to the DVLA. I would do the same myself, but to me it is not a question of whether the person has ME/CFS it is a question of their ability to drive safely.

Maybe there are no cases in the press because it is no more common than in other illnesses or even healthy states. Again, there seems to be some assumption that if you have ME/CFS you likely won't be fit to drive, but there is no factual evidence to back this up as you say yourself. And polls as current on the MEA website require interpretation where incorrect conclusions can be reached, so what help is it in providing facts of the level you need here?

Someone may give up driving because they are no longer fit to do so but equally someone fit to drive might give up because their partner can drive saving them the energy? Or say they gave up because they can't afford to run a car anymore? Or say they gave up because they are also an alcoholic and can't trust themselves not to climb in the car when drunk? The point is your poll can't tell you so you can't assume for instance that those who click that they gave up driving did so because they were no longer fit to drive.

Moving on, I think it highly unlikely that any kind of prosecution would be attempted, let alone be successful, on the basis of what you put on your DWP form, should an road accident subsequently occur. Yes, potentially it could happen, perhaps, but has it ever? Is it likely to? Who is advising you on that and are they able to cite any actual examples?

Anyway, in my experience with the DWP they always ask about my driving as a standard question and I always give them an detailed and accurate answers (as I'm sure 99.9% of people do). Again, there is no rule that if you are sick or disabled that you cannot drive; and the DWP recognise that such a rule is not necessary. In fact if the DWP decide you are entitled to disability living allowance then you can be part of the motorbility scheme which is aimed at enabling people to drive who might have difficulty due to illness or disability.

Oh yeah, the DVLA are about enablement too - if you are disabled they give you free road tax to help you afford to keep driving.

I am a fan of the MEA's work on many things but on this issue I think you're approaching things the wrong way.

 

[L'engle]

@MeSci I think an awful lot of people have stopped driving due to money but are probably not bothering to post. The question likely seems irrelevant to them when driving is so out of reach. I never drove when I was living on my own, couldn't even afford a transit pass with the number of work hours I could do. I can only drive now because I live with family and there is an extra old vehicle here. Even then only on good days when the window of functioning is there.

Also where I live now public transit is near non-existent. A friend who is too ill to drive has to pay $20 in cab fare every time she has an appointment.

 

[charles shepherd]

I appreciate you have to be very careful when giving legal advice as an ME charity. Nevertheless, I think this is a bit of nonsense if you're saying you have to inform the DVLA if you have the disease - is that what you're saying? You do not have to inform the DVLA or your insurance company because you have ME/CFS. You only have to do so only if it affects your ability to drive safely. And that depends on the individual case.

If you personally see someone with ME/CFS, any other disease, or in perfect health who can't drive safely then by all means tell them to report themselves to the DVLA. I would do the same myself, but to me it is not a question of whether the person has ME/CFS it is a question of their ability to drive safely.

Maybe there are no cases in the press because it is no more common than in other illnesses or even healthy states. Again, there seems to be some assumption that if you have ME/CFS you likely won't be fit to drive, but there is no factual evidence to back this up as you say yourself. And polls as current on the MEA website require interpretation where incorrect conclusions can be reached, so what help is it in providing facts of the level you need here?

Someone may give up driving because they are no longer fit to do so but equally someone fit to drive might give up because their partner can drive saving them the energy? Or say they gave up because they can't afford to run a car anymore? Or say they gave up because they are also an alcoholic and can't trust themselves not to climb in the car when drunk? The point is your poll can't tell you so you can't assume for instance that those who click that they gave up driving did so because they were no longer fit to drive.

Moving on, I think it highly unlikely that any kind of prosecution would be attempted, let alone be successful, on the basis of what you put on your DWP form, should an road accident subsequently occur. Yes, potentially it could happen, perhaps, but has it ever? Is it likely to? Who is advising you on that and are they able to cite any actual examples?

Anyway, in my experience with the DWP they always ask about my driving as a standard question and I always give them an detailed and accurate answers (as I'm sure 99.9% of people do). Again, there is no rule that if you are sick or disabled that you cannot drive; and the DWP recognise that such a rule is not necessary. In fact if the DWP decide you are entitled to disability living allowance then you can be part of the motorbility scheme which is aimed at enabling people to drive who might have difficulty due to illness or disability.

Oh yeah, the DVLA are about enablement too - if you are disabled they give you free road tax to help you afford to keep driving.

I am a fan of the MEA's work on many things but on this issue I think you're approaching things the wrong way.

The guidance (in heavy black type) on the DVLA website is very clear:

'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'.

The DVLA website goes on to list a number of symptoms (eg ataxia, bleparospasm, cognitive dysfunction, dizziness, giddiness, memory problems, palpitations, sleepiness, decreased visual acuity) that occur in ME/CFS and/or conditions that may co-esist or complicate ME/CFS (e.g. anxiety, depression) and which may affect a person's ability to drive safely.

What I am therefore saying is that if the situation above applies to someone with ME/CFS (i.e. they have cognitive dysfunction or depression or any other symptom in this DVLA list) then they do have a legal duty to inform the DVLA that they have a condition that might affect their ability to drive safely

 

[Hip]

One observation I would like to make about how ME/CFS affects my driving skills:

What I have noticed is that the brain fog of ME/CFS seems to affect my higher-order cognitive abilities (eg remembering street names and navigating along routes) much more than it affects my perceptual-motor skills (psychomotor skills) and spatial abilities.

So with brain fog, I may get lost more easily, or make errors in navigation, which I think results from the brain fog impacting higher-order cognitive skills (= thinking, reasoning, planning); but in terms of my ability to handle a car and safely weave through traffic, that skill appears to remain fairly intact, and I think this capability derives from perceptual-motor skills and spatial abilities.

Occasionally the brain fog can make me slightly absent minded, so that I may sometimes be a tad slowing in say noticing the rear red break lights on a car in front of me which has come to a halt; but I not come anywhere near having an accident as a result of these occasional lapses in concentration.


Does anyone else here who drives notice the same: that your perceptual-motor skills and spatial abilities seem reasonably OK, but your higher-order cognitive skills are more impacted by the brain fog?

 

[Sean]

I have a car and drive it. Don't have much choice, no public transport anywhere near me (and moving is not an option).

But my driving is definitely affected for the worse. I avoid heavy traffic and night time driving whenever possible, get as much delivered as I can, and generally just minimise the amount I have to drive.

 

[alex3619]

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.

Its similar here. Its hard to get ID that is accepted when you do not drive.

I think the survey is UK only so I did not answer it. If its open to any I will go back.

I gave up driving . I realized that while I could drive in the better times, its possible for a crash to hit suddenly while driving, and then I would find myself severely impaired. Its not worth it.

 

[rosie26]

Its similar here. Its hard to get ID that is accepted when you do not drive.

I have the same problem with ID. I haven't a renewed passport either as travelling overseas isn't appealing to me with this illness.

 

[Gingergrrl]

I am not in the UK but I stopped driving close to a year ago b/c I cannot walk without someone pushing my wheelchair which also involves folding and lifting out of trunk.

Cognitively I could drive but if I was alone, once I got to my destination I cannot walk b/c I cannot breathe so there is no point. I think I must be the only person with this answer!

But I have a disabled placard from DMV (the US equivalent) b/c when my husband or family drive me then we can use the placard to park in disabled spaces for my Dr appts etc.

 

[charles shepherd]

The guidance (in heavy black type) on the DVLA website is very clear:

'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'.

The DVLA website goes on to list a number of symptoms (eg ataxia, bleparospasm, cognitive dysfunction, dizziness, giddiness, memory problems, palpitations, sleepiness, decreased visual acuity) that occur in ME/CFS and/or conditions that may co-esist or complicate ME/CFS (e.g. anxiety, depression) and which may affect a person's ability to drive safely.

What I am therefore saying is that if the situation above applies to someone with ME/CFS (i.e. they have cognitive dysfunction or depression or any other symptom in this DVLA list) then they do have a legal duty to inform the DVLA that they have a condition that might affect their ability to drive safely

We have now added a further Answer to cover your very valid point about people giving up driving for other reasons - e.g. cost of doing so:

he MEA Quick Survey

• 
  Are you still driving a car following a diagnosis of ME/CFS?
  
  • Yes - no change (11%, 10 Votes)
    
    
  • Yes - when I feel OK to do so (31%, 28 Votes)
    
    
  • Yes - on rare occasions (11%, 10 Votes)
    
    
  • No - but I'm keeping my licence (26%, 23 Votes)
    
    
  • No - I've surrendered my licence (4%, 4 Votes)
    
    
  • No - my licence was revoked by the DVLA (1%, 1 Votes)
    
    
  • I've never driven or owned a car (15%, 13 Votes)
    
    
  • No - for other reasons (cost etc) (1%, 0 Votes)
    
    
    Total Voters: 89
    

 

[beaker]

I took your survey, I clicked no I surrendered my license. But that is not true.
I was completely bed ridden when my renewal time came. There was no way to do it.
I'm sure I'm not the only one.

Also in the US there are places that will evaluate your driving to see if you are safe or not.
I know we looked into it for my parents. But I haven't even been well enough to try that.

In the state where I am you can get a state ID at the DVM in place of a license. I have that now.

 

[MeSci]

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.

Most people with ME cannot work. Many became ill when still at school so never had the chance to save any money. Many, like myself, were not earning much, so again, had no money put aside when the illness hit. I had just become a mature student, desperate to start a fulfilling and more lucrative career.

I am actually relieved to find that there are a few other people here who are too poor to drive. Otherwise I feel totally marginalised. In the wrong club. But there is no other one.

People who can afford to drive seem to have no concept of being unable to. They keep asking why I don't go here, or there, and have I been to that place...

They have this world open to them that non-drivers don't. We are stuck at home apart from lifts, buses and taxis, usually for essential appointments. Reminds me of a neighbour who laughed at me because I couldn't afford heating.

IT HURTS.



I used to cycle, motorcycle and drive. I even gave other people lifts. I wish I could now.

 

[nasim marie jafry]

I was still taking driving lessons when I got ill in 1980s - aged 18 - and had gone to live in France as part of my degree, planning to sit test when I got back. Of course, fate had different ideas and I became ill with severe ME, having picked up Coxsackie virus before going to France. My year abroad was abandoned and so were my driving lessons. I have occasionally taken driving lessons since in an automatic car. I can basically drive - ie. I know how to - but would NEVER feel safe on the roads. My concentration is appalling and I also feel physically wiped out, after only a short spell. I have never considered sitting a test. I think I could only manage short drives in country lanes, with hardly any other traffic, but I don't live in the country. So for me, driving is a big fat NO.

 

[MeSci]

In fact if the DWP decide you are entitled to disability living allowance then you can be part of the motorbility scheme which is aimed at enabling people to drive who might have difficulty due to illness or disability.

Oh yeah, the DVLA are about enablement too - if you are disabled they give you free road tax to help you afford to keep driving.

I suspect that this is another one where I will 'fall through the net'. Some days I can walk quite well and quite a long way. Most days I can walk too far to qualify for a bus pass, and I don't have any of their specified illnesses.

It seems that you need DLA/PIP to qualify for any help with transport. It's all or nothing. I asked whether I could just have the money for a taxi into town when I wasn't strong enough to walk up the hill. The answer was no, of course. There are no buses up the hill. Luckily I can manage it most weeks, resting the day before and PEM-ing afterwards. Takes a lot of time out of one's schedule. And that eats into self-employed work. Which means that there is not the money to spare for taxis.

 

[wdb]

I'm in two minds on this one, has anyone discussed this with their insurance provider, could this get you priced off the road ?

If you are only moderately affected and drive responsibly maybe you might want to just maintain plausible deniability and keep your medical records as clean as possible, or even find a doctor who will write you off a a deconditioned hypochondriac

 

[Scarecrow]

Does anyone else here who drives notice the same: that your perceptual-motor skills and spatial abilities seem reasonably OK, but your higher-order cognitive skills are more impacted by the brain fog?

Yes. I do have or have had all the symptoms on Charles's list below but they don't affect my ability to drive safely.

For example, I have blurred vision but it isn't related to reduced visual acuity. It applies only to dense text and, if I read aloud to someone, they wouldn't be aware that I have the problem. Only I can see the letters swimming. So this problem is irrelevant to driving.

I have good lane discipline and am very aware of what's going on around me (a feature of ME that may actual enhance driving ability rather than hinder it). I'm courteous to other drivers and I don't make my passengers nervous.

There are two ways in which having ME does affect my driving but, even though they relate to lapses of concentration, I don't believe either of them are safety issues. They only ever happen when I have a passenger in the car. I may be aware that I need to turn but sometimes I turn one street too early or drive past the correct turning. I still 'mirror, signal, manoeuvre' correctly, it's my timing that's wrong. The other thing I do occasionally is start to slow down approaching traffic lights when they are on green. I don't actually stop at them. I think it's just my brain telling my to be cautious before the colour of the lights actually register. I don't drive through red lights!

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.

I can't deny that these are all symptoms of ME but I'm not comfortable that you seem to have conflated fatigue with sleepiness and that you've failed to emphasise two very important factors. (1) The actual nature and severity of any of these symptoms may not actually influence driving ability. (2) As we all know, symptoms fluctuate and they are also made worse by effort.

People without medical conditions make decisions about when they are and aren't safe to drive. PwME are no different.

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.

.
And, presumably, MEA would support the stance that there are others who are safe to drive even though no where in your notes did you state as much?

It wouldn't bother me if the DVLA listed ME as one of their health conditions. Arguably it would be preferable to the current situation where MEA appear to be saying if you have certain symptoms then you should be informing the DVLA. Self-reporting on symptoms alone is unsatisfactory because the symptom categories are far too broad.

I don't think MEA are wrong to address this issue but I would like to see a more balanced approach. In emphasising that ME can adversely affect driving ability, you've failed to adequately acknowledge that many pwME are able to drive without putting themselves or others at risk.

 

[charles shepherd]

We also have a discussion taking place on car driving and ME/CFS on our MEA Facebook page:

https://www.facebook.com/pages/ME-Association/171411469583186

 

[maryb]

Sorry I only read a little from a post on the FB page @charles shepherd , I wouldn't be unkind to people, but if someone is saying they have such severe cognitive problems in addition to other major symptoms and says 'my family are adamant I shouldn't drive', really!!!. Its seems fairly obvious to me and certainly the majority that she shouldn't, why does she need to ask what other people think. Maybe I'm just getting old and far far less tolerant. Its cases like this that may lead to licences being withdrawn, just stupid.

 

[snowathlete]

The guidance (in heavy black type) on the DVLA website is very clear:

'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'.

The DVLA website goes on to list a number of symptoms (eg ataxia, bleparospasm, cognitive dysfunction, dizziness, giddiness, memory problems, palpitations, sleepiness, decreased visual acuity) that occur in ME/CFS and/or conditions that may co-esist or complicate ME/CFS (e.g. anxiety, depression) and which may affect a person's ability to drive safely.

What I am therefore saying is that if the situation above applies to someone with ME/CFS (i.e. they have cognitive dysfunction or depression or any other symptom in this DVLA list) then they do have a legal duty to inform the DVLA that they have a condition that might affect their ability to drive safely

I don't see what the significance of it being in heavy black type. The key word here is 'could' which occurs in each statement. It isn't an arbritary rule.

There is a similar rule that they 'could' crush your car if you don't renew your car tax, yet very often people forget to renew and the DVLA send you a letter and you go online or to the post office and renew it. The DVLA even have it on the system to backdate it as it happens all the time.

The list of symptoms and other statements about drugs backs this up, as potentially you could be prosecuted for driving with a cold or taking a hayfever tablet. The symptoms may well apply to many with ME/CFS but they are so broad as to cover just about anything, potentially.

The idea of everyone in this country who has one of these symptoms at some point, or at risk or developing one at some point, phoning up the DVLA to report it is laughable.

The actual spirit of the law is that you should never drive unless you are safe to do so, for whatever reason, and if you do so and then cause an accident then you could be prosecuted.

This does not mean anyone with ME/CFS can not drive safelyall or some of the time or that they have a legal responsibility to report their illness or symptoms to the DVLA. It isn't an issue because you just don't drive if you have symptoms that affect your ability to drive.

I really don't understand why the MEA want to portray the DVLA rules in an arbritary light. For that matter I dont understand why the MEA is majoring on such a minor issue (comparative to some of the issues our community faces) anyway?