Another one of those things I've been fretting about for years but never taken action on

Someone just posted in the

sleep_disorders forum in a state of distress. He has sleep apnoea and he's finding it very difficult to cope with both the illness and the recommended course of treatment, which is understandable since both are unpleasant. In the course of discussing this, he mentioned with outrage that his doctor was brutally honest about the fact that if he has untreated sleep apnoea beyond a certain level, he's not safe to drive and the doctor should report him. Sleep apnoea is a condition where multiple episodes of breathing stopping occur during the night, which causes daytime drowsiness amongst other problems. It's fairly easy to assess, they do a sleep study and can classify sufferers according to the number of apnoea episodes per hour. There are firm legal guidelines about at what point you are and are not allowed to drive.

I also have a medical condition which impacts upon driving ability. I don't drive and I don't have sleep apnoea, but from all I've gathered, sleep apnoea is small potatoes compared to severe ME, and probably compared to moderate or even mild ME. I've not had a good night's sleep in eleven years, and that's only the beginning. Yet there is nothing stopping ME sufferers from driving. I've mentioned this to ME sufferers I know who still drive, and to an ME organisation. I generally get these answers.

1) "I can tell when I'm not up to driving." People say the same when they've had a few drinks, and at least with alcohol you know how much you've consumed. ME is very difficult to assess because it is a variable condition with no clear markers. For instance, I have trouble judging whether I'm up to leaving the house and going to a shop across the road (which can cause no trouble, or cause a collapse necessitating a week's bedrest), and frequently don't realise how ill I am.

2) "No one with ME that bad actually drives." I'm afraid they do. I know two people with severe ME who are still driving, and I still shudder at the memory of being driven by someone with moderate ME. I suspect that even mild ME may be the equivalent of having had a few drinks before driving.

3) "ME already restricts your life and independence terribly, you can't take away one of the few things that gives us some freedom." This is where I feel awful, because I know just how bad the restrictions are, and how few people get the care that they need. However, that's not as important as the risk of car crashes, I'm afraid.

You may ask why ME isn't listed as a condition that impairs driving ability. The answer to this is that ME is wildly neglected by the medical profession, very poorly researched, and still very difficult to diagnose and assess. It simply got overlooked. Every few years there are ruling that ME must be treated as a physiological disorder (showing how many doctors still wave off sufferers by saying "it's all in your head, dear"), and pointing out that it is comparable to MS in severity and scope. They are widely ignored. This makes life hellish enough for ME sufferers, who are disgracefully neglected, but it's outrageous that people could die in road accidents because of this.

I've just e-mailed the Driver and Vehicle Licensing Agency, after ringing them and being told that ME is not listed as a medical condition that even warrants investigation. I've also e-mailed the Royal Society for the Prevention of Accidents and the THINK! Road Safety website. Here is the e-mail that went to the latter two organisations, which is mostly identical to the one that went to the first.

______________________________________________________________________

Dear RoSPA,

I am writing in the hope that you may be able to take up a campaign issue. At the moment, there are certain medical conditions which are notifiable under the DVLA as they impact on driving ability. One condition which is not included and has not been investigated by the DVLA is ME, also known as CFS. ME is a neuro-immune disorder of which the Chief Medical Officer of the WHO has said, "CFS/ME should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease". This condition ranges from mild all the way up to fatal, and for many people is highly debilitating. Its symptoms include extreme fatigue, poor concentration, poor memory, slow reflexes, visual distortions, muscular weakness, muscular fatigue, poor grip, pain, dizziness, and sleep deprivation similar to or worse than that experienced by people with sleep apnoea (a condition which is taken very seriously by the DVLA). According to Action for ME http://www.afme.org.uk, 250,000 people in the UK officially have ME, but they estimate that the actual number may be as high as 500,000. It is hard to tell how many ME sufferers are unfit to drive, especially since the condition is one that fluctuates, but a good start would be to look at http://www.25megroup.org/, which estimates that 25% of ME sufferers have the condition at a severe level, where driving would be completely unsafe.

I have been driven by someone with moderate ME, and it was far more terrifying than being driven by someone who was thoroughly drunk. I know two people with severe ME who are too ill to work or study, mostly housebound and frequently bedbound, and often have trouble simply walking across the room, and yet they still drive. There are many others in this situation. I have severe ME myself, and know well that there is no way I would be medically fit to drive (I never learnt); others who passed their test before they became ill are unwilling to relinquish one of the last things that permit them some independence, and may often be unable to judge when they are too ill to drive safely, in much the same way that someone who has had a few drinks doesn't realise that their faculties are impaired.

I realise that this would be difficult to implement as ME is an awkward condition to assess, but I feel strongly that ME should be officially listed as a medical condition which can impair driving ability and investigated as such.

Yours truly,

elettaria

______________________________________________________________________

Let's hope I can get something done. If you also feel strongly about this, please do join in. I don't have the strength to mount a full campaign on my own, but hopefully one of these other organisations can do so.

Flat | Top-Level Comments Only

Geez, even if you have narcloepsy, you could have your license pulled.

I dunno. I don't have a license and don't trust my driving abilities. It means I'm inconvenienced, but it means other people aren't at risk. *shrug* Maybe my ideas about it would be different, if I lived in areas that didn't have public transportation.

Or if you were unable to use public transportation. The thing is, if you're too ill to get on a bus, you're probably too ill to drive as well.

Yeah...on the one hand, I understand a person needing independence. (I've had it restricted on a few occasions, not by any legal issue.) But on the other...there's public safety to be concerned about.

(Skipped over here from your post on the cfids_me comm - as you linked there to this post I assume you don't mind?)

While I do agree with a lot of what you've said, I'm not sure about this: "if you're too ill to get on a bus, you're probably too ill to drive as well." Now, as I mentioned I don't drive, so I can't say precisely what level of wellness it takes to drive. But I can think of lots of places I need to get to where it takes *hugely* longer by bus than in a car, because the bus doesn't go a direct route and may need a change of buses and the stops aren't convenient so there's a lot of walking either end. The car journey is on nice straightforward roads and there's parking directly outside both our house and the destination. If you add in extra factors such as carrying shopping, it does seem to me very likely that there are many, many instances where someone could be well enough to drive somewhere but not well enough to take a bus, especially if their range of symptoms is less of the constant fatigue and cognitive issues type and more towards the muscle-pain and post-exertional malaise type, so that a 10-min drive wouldn't effect them but a 40-min difficult bus-journey could cause severe payback for days.

OK, you make a good point about the crappiness of buses. That said, we're talking about a potential ME relapse vs. a potential car crash. If you have a dizzy spell while sitting on a bus or walking to a bus stop, the worst that happens is that you feel a bit crap, stumble, need to sit down, that sort of thing. If you have a dizzy spell at the wheel, you and several other people may not feel anything ever again. If you need to go out and you're too ill to drive, you should use an alternative form of transport (I'd be curious to see how occasional taxi fares compare with the cost of keeping a car) or stay at home, rather than endanger lives. In addition, I'd want to see a good margin for error for anyone driving while ill, and if you feel up to driving a short distance but would be knocked out by a longer bus journey, then you're probably borderline. It may take more energy to use public transport, but it doesn't require as much solid concentration and so forth for a safe outcome.

Most of the car accidents I've known of have been people who were not in a good state to drive for some reason, either medical or alcohol-based, and thought they were. When my stepfather was in hospital last year, my mother was in a high state of anxiety and caused quite a bit of damage to her car simply by parking it in the hospital car park. I had to enlist the support of my aunt to talk her into getting a taxi instead, as she was in no fit state to drive. My uncle regularly drives under the influence of alcohol or cannabis, and he drives like a maniac. One of the main reasons why the alcohol limit for driving is so low is that people can think they're completely unaffected when in reality their reflexes have slowed to the point of being dangerous. Same goes for sleep apnoea: people think they're fine but they're not. If it's a relapse you're risking, fair enough, make a guess, but if people's lives are at stake?

God, sweetie, good on you. I'm pretty sure that at least one of those organisations will take it seriously, especially since if someone with ME did end up causing an accident and you took the fact that you had warned them about it to the press... I know that's not the ideal reason for them doing it, but it's probably the most likely, and to be honest anything that gets them going is good, right?

Speaking of the press, I don't know if you heard about the headless, handless body that was found round here recently? Yeah, my friend Ellie's dad found it. HOW CREEPY IS THAT. I'd freak out. *shudders*

Ugh, I have so much to do before tomorrow. Can there be more hours in the day, please?

I didn't hear, but YEESH.

I was diagnosed when I was in the middle of learning to drive. My health dipped only a couple of months later and I knew I was in no way up to driving. I was not housebound and was studying part time but I knew my limit.

Even though I now class myself as aound 95% and passed my test 2.5 years ago there are still days when I know I am not up to driving. Recently I have had a bad virus and have not driven myself to work because it involves night driving and I'm always getting more tired in the evenings (as my day now starts at 7am thanks to baby). I am usually ok to drive in the day and visibility is better so that's less of an issue. I do agree though that the amount of people who classify themselves as moderately or severely affected and still drive is quite scary! When I stopped myself learning there were people worse than me still driving themselves all over the shop (some even motorcyclists which is more physically demanding) and I could not understand how!

You sound like you're being very reasonable about it; I wish everyone else was. Being able to drive some days and not others for mild ME sounds about right to me.

Your mention of the baby brings up an interesting related point. New parents are often suffering from sleep deprivation at the level which Amnestry International would count as a form of torture: what do you do about them on the roads?

Oh god don't get me started on mothers in cars (especially 4x4s)! I go to several baby groups and navigating the car park with some of them is a total joke sometimes. They just seem unable to think of road users other than themselves and would sooner force you off the road than stop or slow down. They also have the annoying habit of standing in empty parking spaces to have a chat and getting annoyed if you want to park there! Generally though I think those are symptoms of a lot of women with children though - "I have kids, the world owes me for adding to the population." In case you're wondering, I am apologetic for my accidental spawning but hope to adopt one day to make up for it, hehe!

Good heavens, I don't blame you for having kids, I'm too busy being dead impressed that you're managing it with ME!

Sleep deprivation *and* a selfish driver in a huge car doesn't bear thinking about...

Hmm, although my awareness of anything relevant is admittedly limited, I'd tend to agree with you on just about everything. It seems clear that it should at least be something that the DVLA consider, and can be aware of as a potentially dangerous impairment, even if many people are capable of being safe on the road while dealing with ME of some level of severity.

It might be interesting to see what people would think about this in an LJ community - you'd probably get some people feeling quite strongly on both sides of the issue. I've seen plenty of comms with which I've shared interests, but which I've stayed away from because the general mood of the membership seemed uncomfortably bitchy or aggressive. I've no idea if this tends to be the case anywhere you were thinking of cross-posting this, but you explain yourself well here, and I think people would be hard pressed to take any of this as an attack and react with hostility. Perhaps you could re-emphasise that some increased awareness and appropriate precaution is all you're after, and you're not trying to blindly and indiscriminately trample on absolutely everyone's rights, if you think they could do with a little more mollification.

I've posted it here (http://community.livejournal.com/cfids_me/331385.html), with a link back to this post if they want to read the full rant.

heh. I wonder what they'd say about (new) parents. I haven't gotten a full night's sleep in over a year. I think I could seriously sleep for a day and still not feel fully rested.

And another one due... How's the pregnancy getting along, and how are the three of you doing?

I'm not sure that it would be worth legislating about new parents, but a good educational campaign and doctors/other suitable professionals who would keep an eye on new parents might be helpful. Sometimes you're just too tired to think of an alternative to doing what you do normally, such as my mother automatically driving to see my stepdad in hospital when she wasn't up to it, as I mentioned above.

I decided to sleep on this reply last night because I was angry with you and very tired and couldn't decide what was what.

However, I am still moderately irked this morning so am leaving it here. You've had your rant now I am having mine...

I think this is preposterous of you to write to ROSPA to complain about something you know nothing all about. Having a campaign to have someone else’s driving licence potentially revoked on medical grounds etc is ludicrous. OK, you've been freaked out by one person, kindly don't judge everyone else’s driving through being frightened by one person who may or may not have been a safe or confident driver M.E not withstanding. I know plenty of people who drive like a nightmare and they are not M.E sufferers – why don’t you start attacking that?

Yeah, hell yeah I am angry - I am probably one of those 2 severe sufferers mentioned in your post. FYI anyway, I am currently not driving however, this is largely irrelevant. How can you judge how safe or competent other people are? How dare you write saying that I should have my driving licence taken off me or I should have a DVLA notifiable illness when you know nothing about me or how my condition affects me personally and whether I am capable or not of making rational decisions. You said in your original post that you’ve misjudged out going to the shops well that’s just you. I think I know my own illness better than anyone thank you and am generally pretty well aware of how I am, so therefore I feel that I am fully capable of making my own decisions about my general fitness to drive. So kindly leave that decision up to me as it's mine to make, not yours or anyone elses.

As for knowing your limitations - I do know my limitations thank you very much although you've never actually met me far less been in a car with me, so you wouldn't know that. I’m not going to justify my knowing my illness and limitations to you cus frankly it’s none of your business anyway. I think most sensible people with M.E do actually know their limitations although I won’t expect you to believe that. Go after the people who don’t rather than the people who do.

According to you, you would be quite happy to watch me give up the one thing that's probably helping this illness cus you'd prefer to report me to the DVLA or have my driving license taken off since I am severely affected ensuring I cannot get there at all. You know full well that before I bought my powerchair that my car was the only way I could get to the local shops/doctors etc so you would also be denying me that right. I think we are living in enough of a nanny state without you adding to it.

Thanks a bloody lot! Why don't you just mind your own business and concentrate on your own illness instead of worrying/wondering about anyone else. Most people I know who are severely or moderately affected are aware of their limitations both with driving and their illness so kindly don’t class us all together. Who are you to judge what is best for someone else anyway? I think you’d be much better served looking at your own situations rather than dissecting other people’s on matters which are actually no concern of yours.

Something else you seem to have missed, just because something is a DVLA notifiable condition does not mean that you will keep people off the roads. I am thinking about the many people I know who have illnesses such as M.S, Strokes, heart Problems etc who cannot walk but can still drive legally. What is it you actually want; M.E sufferers off the road altogether or just to be legally notified to the DVLA?

Honestly, you’ve really taken the cake this time acting the moral majority. It is not as if M.E is understood medically yet. You could also say the same about my (and countless others) operations of an electric wheelchair or powerchair. Why is that different? Yet again, I know my limitations for that and will not go out when I know I am not able.

nonamoose:

Hi, I'm James. Friend of

elettaria's, through an old housemate of mine. I don't know you at all, so I hope nothing I say sounds like any kind of a judgment on you, but I felt like I should stick my nose in anyway and respond to this. (Split over a couple of comments because I was ill the day we learnt conciseness at school.)

As I say, I know nothing about your situation, and don't pretend I can imagine what you go through being afflicted with something as horribly crappy as severe M.E. But I think I can still have some level of opinion on something like this, even without that kind of personal insight into it, and I don't think that

elettaria is as entirely without justification as you seem to think.

It's certainly not for me to tell you that you "shouldn't" be offended by reading something, and I hope not to make that any worse myself. But even though this does mean a lot to you personally, I don't think it's something that was ever really intended to be framed in a personal way.

This isn't a post about

elettaria not trusting

nonamoose, or about

elettaria drawing grand generalisations based on one incident, or about the specific circumstances of

nonamoose's life and health, or about

elettaria's judgment about

nonamoose's limitations. It's a post about whether the agency that regulates laws in this country about operating motor vehicles should take into account a certain medical condition, and the possibility that it might impair sufferers' ability to drive safely, when making their decisions about people's legal rights regarding driving.

(continued from above)

It's all very well using terms like "nanny state" to describe these kinds of decisions, but actually, I want some organisation laying down some kinds of rules about driving safety. I feel much safer this way than if people were allowed, for instance, to get drunk, then insist that they know their own limits, that they're the best person to judge what they're capable of, and that it's totally unfair to impose some barbaric rules on everybody who's drunk, when many of them can drive quite safely and there are plenty of dangerous sober drivers out there anyway.

I don't mean to compare your own condition to drunkenness in any meaningful way, but when it comes to laws on driving safety, surely it makes sense to ask the same questions of alcohol impairment, M.E., or anything else. Is a person with this condition, or in this state, totally able to drive safely? Are they totally unable? Are there some circumstances which may help or impair their ability to drive safely, which most people don't have to face? Are these circumstances predictable or unpredictable? And probably many other, better questions, devised by someone who knows what they're talking about rather more than I do.

The answers to any of these questions about your particular situation, though, I couldn't begin to guess. It's entirely possible that you're a safer and more confident driver than I am, but people's individual variations are too wide unpredictable to usefully take into account, which is why

elettaria's post was only really about the general rules which can be inferred, broadly speaking. Strict drink-driving rules are a good thing, even though I know some people who can hold their liquor well and would probably be clear-headed enough to be very careful on the roads if they ever did go out while over the limit, and I know other people who I feel very nervous being in a car with if they're just in a bit of a bad mood.

And if someone who hasn't hit any of the DVLA's medical red flags is driving dangerously, then they're going to get picked up for it too if they're caught. All that these restrictions are aiming to do is identify those people most likely to drive dangerously in the future, based on the few factors we can spot ahead of time, and prevent anything unsafe from happening, when it seems significantly likely that it will.

Whether M.E. is a condition that makes dangerous driving significantly more likely is a difficult question with a very complicated answer, as are the similar questions about sleep apnoea, narcolepsy, or whatever, and if they weren't even asking these questions then they wouldn't be doing their job. Whether or not you are unsafe on the road, and should be given complete autonomy to decide your own abilities, is a different question entirely. Even if you're a great driver, know your limitations, and know your condition well enough to stay away from the car when there's any remote danger, that's not something which it's necessarily safe to generalise to everyone.

Well, this seems like as good a point as any for me to just shut up.

No, I understand her points and they are certainly valid ones and I also understand what you are saying too and I thank you for posting what you did. I realise that I may have flown off the handle somewhat and for that I apologise. I will not make excuses for what I have said as I do stand by it but I hear what you are saying about it not being about making judgements on my life etc, etc. It felt like that however, but that's my problem and nobody else's.

PS, I was also off school the day we learned what concise was lol... hmm, probably punctuation too mind you!

What upset me is the blanketness of it all. I just don't think the solutions to the problem are as cut and dried or easily sorted as

elettaria would like. This would have huge implications for many many people including those mildly or moderately affected and, such has been pointed out before, everyone is different.

Speaking from a personal point of view, losing my licence would have a devastating impact on my physical, emotional and mental health (as it would for many sufferers) and it's quite scary and threatening to think that could happen. That is why I was so pissed off but yeah, I could have handled my original post a lot better and for that I apologise, especially to

elettaria but I thank you for making a hell of a lot of sense. I do actually agree with a lot of the points raised, particularly regarding alcohol but it's not an easy problem to find a solution for.

Anyway, I apologise.

This is going to be horribly long, I'm afraid. I've tried to divide it into readable chunks.

I'm really wishing I'd put "may impair" in bold, as several people seem to think I'm advocating banning ME sufferers from driving, which is a misreading of what I wrote. The point is that there are definitely people with ME out there who aren't fit to drive. I'm one of them, and I know that my symptoms are typical and shared by many other people. I don't need to have driving experience to know that poor vision, poor muscular control, extreme fatigue, dizziness and cognitive dysfunction are all things that affect driving, as these symptoms have been researched with regard to driving. This means that ME is a condition which *may* impair driving ability, it's as simple as that, and as such should be considered along with the other medical conditions which may impair driving ability, instead of being left out because the medical world likes to pretend we don't exist. "May" means that it may do for some people and may not for others. I spent a lot of time in the other post discussing possible ways of assessing people for driving fitness, which is particularly difficult since ME is a condition which varies not only from person to person, but for each individual from day to day and year to year. However, I was so upset by your response that I haven't looked at that post since last night. Thank you for apologising, and I'm sorry that I accidentally upset you. I'm not maliciously trying to restrict people's freedom, I'm trying to cut down on the risk of car crashes.

If we look at this, there are three categories of potential drivers with ME.

1) People who are absolutely fine to drive at any time they choose, due to having relatively mild ME.

2) The ones in the middle, who can drive some days/months/years and not others.

3) The ones like me, whom you wouldn't want on the road at any point unless their illness did a substantial turnaround.

Just to start with, I presume we can all agree that if you're at a level where you're medically unsafe to drive that day (imagining for a moment that it's something that could be tested, for instance cognitive impairment equivalent to being over the alcohol limit), you shouldn't be on the road, right?

Since the medical profession routinely underestimates the severity of ME, realistically speaking they'd probably just ban the ones in the third category from driving, and it would at worst be hit and miss for the ones in the second category (who would probably be getting through tests on energy reserves as far as possible, so if anything would appear better than they generally are). With all the doctors out there claiming that ME is nothing to fuss about, and the way that ME symptoms routinely fail to show up on tests, I really don't think we're in any danger of them suddenly banning ME sufferers from driving, otherwise I wouldn't have contacted those organisations. When I spoke to the RoSPA chap yesterday, I spent a lot of time talking about the difficulty in assessment and stressing the variability of the condition, and made sure the message got through to him. I also discussed with him the way that other medical conditions are currently assessed, and the key word there is "assessed", they don't just randomly ban people who are healthy enough to drive. He's contacting the Chief Medical Advisor for the Department of Transport about this, I'll let you know more when I hear from him.

For the third category, I don't agree that no one with ME that bad would drive. The very reason there are laws about driving when drunk or with other relevant medical conditions (or speeding, or driving while talking on a mobile phone) is because of all the people who make the wrong decision in that respect, and all the car crashes that have resulted from that. I happen to know that there are people out there driving who are legally blind, by which I don't mean having monocular vision which they've adapted to (such as

eye_of_a_cat, who's legally blind but doesn't actually find that her vision restricts her), I mean that they can hardly see a thing. If I'm crossing the road, I want to know that there are laws doing their best to protect me from unsafe drivers.

There are a number of reasons why I don't trust the general public in this way. I know that "don't trust" is a harsh phrase, but please try not to be offended by it or take it personally: I'm not just talking about trusting my friends, I'm talking about trusting everyone on the road. I think it's a hard decision to make, working out whether you are up to driving, and you have my sympathies.

1) Cognitive impairment at a low level affects driving, and before the person thus impaired can notice it. If you've had a drink or two or a very bad night's sleep, you can feel pretty much the same as usual but your reflexes are slowed, and it has been proven that the difference is huge where driving is concerned.

2) If you've had a couple of drinks, you know that you've had a couple of drinks and that you're over the driving limit. If you're a bit slower than usual due to ME, you may not know. What would be ideal here is something you could use to test your cognitive function before going out. Hell, it would be useful in a number of ways, I'm always overdoing it because I misjudged what I was up to before I started.

3) ME has a strong unpredictable streak. Even after eleven years of illness, I'm constantly assessing how to pace myself, and while my decisions are better these days, a fair number of them still turn out to be wrong. This is partly because ME can get worse very suddenly, and it's difficult to predict how fast a given activity will tire you out. In addition, the more ill you are, the harder it is to judge. When you leave the house, how do you know whether you will be able to drive for thirty minutes or whether your symptoms will start affecting you after just ten? How tired will you get from the activity required from wherever you're going, and how will that affect the return trip? What happens if you're more tired than expected by the time you've finished your appointment or whatever, but still have to drive home because you can't leave the car there?

4) People with ME at the point where driving may be affected are generally restricting their lives, and tend to be desperately clinging to whatever they have left, unwilling to give up independence. They're usually making this car trip because they really need to. The problem with doing things because you really need to is that you tend to overestimate how much you can do, or determine to get through on willpower alone, and may make it a point of honour to get that thing done. It's not the best position for retaining your perspective, and running on willpower can let you down in the middle of doing something, not to mention masking symptoms that are still there.

My mother kept driving to visit my stepfather in hospital when he had a knee replacement last year, even though she was in a state of high anxiety and sleeping poorly (she sometimes has to take Valium at night because of an eye problem, I can't remember if she had taken it at that time). After she opened the car door into something that damaged it, and further damaged the car by parking badly at the hospital, my aunt and I gave her a stern talking-to and insisted that she took a taxi. She hadn't thought of taking a taxi because she's used to driving everywhere, the distance and resultant cost was enough that she wouldn't usually get a taxi for that sort of trip, and I had to point out that this was a special occasion and money was not the top priority (anyway, the operation had already cost them a bomb, this was nothing in comparison). And unsurprisingly, she was too busy fretting about my stepdad to think all of that through, and thought she was in a better state for making decisions than she really was. When they came to visit me in December and she ended up in hospital with septicaemia, I ran myself into the ground looking after her because it had to be done, and also lost perspective and overdid it way beyond the point that was sensible. At the current rate of progress, it will end up taking at least six months to recover from that, and I thought I was heading for a relapse of a few weeks at the time.

5) People with ME get used to blanking out symptoms in order to keep going, both physically and psychologically. Denial's a great place, where would we be without it?! In addition, once you've been ill for a few years, you've lost sight of what it feels like to be healthy, especially with things that are difficult to assess such as precise concentration, and there are multiple relevant symptoms to assess here, not to mention medication that may affect this such as codeine. Again, not a good point for working out whether you're fit to drive.

6) If you have an appointment to attend, or need to get to the shops before they shut, you're running on someone else's schedule, not your own body's, and you'll generally do your level best to make that appointment if at all possible, or wrench yourself out of bed before you're fully rested so that you don't miss the shops. If you're short of time because you're rushing to get out of the house, you may not do such a good job assessing yourself either, or may do something else such as skip eating which can increase the chances of suddenly getting worse (these are the main reasons I had that collapse at the hospital the other month, I reckon).

7) ME is poorly treated by the medical profession and assessment is a joke. So we have nothing to measure our fatigue/cognitive impairment/muscular strength against, apart from knowing that they're not at a healthy level, and knowing (but not precisely) when one day or month is worse than another. I'm harping on about cognitive impairment, not because it's necessarily the most serious problem (fatigue probably wins there), but because it's the one that is researched with drink-driving and thus the best-known. Let's say that there's a scale of cognitive impairment, with 0 being normal (hah, I should say "normal") and 10 being absolutely gaga. 2 is the level you'd get from a single unit of alcohol, which affects driving but just about within legal levels, and which is not noticeable to the person experiencing it, and 3 is the point at which it's legally considered unsafe to drive. How do we know where we are on that scale, considering that it's something that can't be estimated precisely? We might be able to work out that we're two points down one day and four points up in general one month, but how do we even know what our starting point is by now? If your cognitive impairment never goes beyond 1, along with other symptoms staying mild, you're probably OK. If it ranges from 3 to 7, you'll consider a 3 or 4 to be a good day, even though you're actually not safe to drive that day. If it's at 2, then that alone would probably mean you were OK, but combine that with other ME symptoms, and possibly medication, and it's like the effect of adding a single drink to driving in wet conditions or talking on a mobile phone, it takes the risk up to the unacceptable level.

8) You may be on medication that affects your alertness, and as discussed above, you may not realise how far it's doing so. When I'm getting over having taken codeine, I get to a point where I think that the effects have stopped, but then I'll try to read and find that my eyes still can't focus, or walk into a door. I had a vicious reaction to a sleeping tablet a few years ago that caused hallucinations that evening and a hangover lasting a week. Every day when my home help came to see me that week, she commented that now she saw me today, she realised just how stoned I was the previous day. So I'd think, "Hah, I'm better now," and then the next day she'd say the same thing. And those are the medications where the results are relatively obvious, it's much harder to tell with the more subtle side-effects.

9) Then there's the question of leaving a margin for error. Everyone who's driving with ME is dealing with this, and everyone with ME is doing it generally, though with less severe potential consequences. Some people are going to leave a margin for error a mile wide, and some are going to leave one that's too narrow. The factors I discuss above are going to affect this margin for error: it's difficult to judge, and you're going to leave a smaller margin when it's something you just can't miss, just as you're hopefully going to leave a wider margin for a longer journey.

10) After that, we get to the simple point of how bothered you are about this. Some people routinely drive in a way that involves weaving all over the road or running red lights and don't consider that a problem. Some people will avoid driving for a month if their hand shook a bit one day. As has been shown with alcohol, other medical conditions, and speeding, you can't rely on every single person on the roads to be putting the Highway Code at the top of their priority list. That's why we have laws in place.

In conclusion: we have two problems here, the ones who are really doing their best to judge when they are or are not up to driving, and the ones who don't care or won't accept that they are at risk. I think we need laws to protect us from the latter, and guidance to help the former.

I'm still trying to work out what would be the best way of doing this. I imagine it applies to other variable medical conditions, and I'm curious as to what they currently do about people with, say, MS. Probably not enough. Anyway, here's what I've thought of so far:

1) Regular driving tests following diagnosis with a condition which *may* impair driving ability and which is variable in any way. (As opposed to, say, the ones where they simply ban you from driving altogether, such as blindness.) I know, they're not fun, and it's a snapshot rather than an overall picture through time, but at least they make sure you can drive under stress, and they're probably the easiest way to assess driving ability in a broad fashion. How regular would depend on the medical condition and how fast it can change, and if this were actually to be implemented, budget and the practicalities of recruiting extra driving test instructors. Yearly?

2) Careful monitoring by a doctor who knows enough about the medical condition in question to assess it accurately. Perhaps two doctors, and the option of asking for another medical opinion. You don't want some twit making the wrong decision for you and then being stuck with it.

3) A means of assessing the various abilities needed to drive, and assessing them in such a way that it will accurately reflect any medical condition (rather than the current "can you take two steps? Right, no problems walking then" approach). Judging from all the research about how alcohol impairs cognitive function, there is some way of assessing this at least.

4) Solid, detailed guidance that can be provided to anyone who is having trouble driving, that will help them assess the whole situation, both in general and on a day to day basis, and information about the alternatives for when they're unable to drive. This would also be useful to new parents suffering from sleep deprivation, for example, or people who periodically are under high stress such as exams.

5) I feel like I'm wandering into science fiction here, but what would be really handy would be the equivalent of a breathalyser, a small gadget that could measure some of the key faculties needed for driving (say cognitive ability, muscular strength and vision) which drivers could use to check whether they were up to driving that day. I'm talking about home use, I suspect that putting this sort of thing into the hands of the police could just cause trouble. Getting thoroughly into science fiction, I wonder what would happen if such devices were built into cars, so that the car would measure whether you were capable of driving before starting, and freeze up if you weren't? Chaos, probably.

6) State funding for taxi fare concessions for anyone who is unable to use public transport for a medical reason, and making these easy to access. This already exists, but it could do with being bumped up, at least where I live. I'd be curious to see a comparison between the cost of running a car and the cost of using taxis, both with and without concessionary schemes.

I'm just going to pick up one tiny part of this very comprehensive set of responses. and that is your very last point. I just wanted to point out that for a lot of people it isn't realistically going to be a "comparison between the cost of running a car and the cost of using taxis". Most of the cost of car use isn't in the petrol for individual journeys, it's in the cost of the car itself, tax, MOTs and services, and of course insurance. For a lot of the borderline people, who are okay to drive on some occasions and on other occasions not, *AND* for the many single-car multi-adult households, all of this expense has already been paid, so you're looking at a comparison between petrol cost and taxi fare for any given journey - and clearly taxi fare is always going to be a lot more expensive there. This I think means two things, both of which could weigh on either side of this argument (as a non-driver I'm not taking a stance either way.) Firstly, that where money is tight taking a taxi can be a serious impact for someone. And secondly (and relatedly of course) that having already gone to all the expense of a car, people may understandably be more likely to choose to use it on any given occasion. I've tried to word those points as neutrally as possible, but they could be read as on the one hand that 'making' someone take a taxi is yet another blow to the disabled, and on the other hand, that people with cars may be more likely to make the bad decision to drive unless there is some outside force to stop them. I will leave it to others to decide which way they want to look at it. But I do know that we have a car which, as my husband goes to work by train, just sits on the drive all day, and I often regret that I cannot just use it to get to all the places that it is such a huge effort to get to (such as my son's nursery - a 4-minute drive away, but an exhausting 20-min walk with crutches, or a £3.00 taxi fare.)

Hmm. This is a tricky one. I have to say, hon, my initial reaction was something like

nonamoose's. You have some valid points but I'm not at all convinced about what you're doing or how you're doing it. (And I suspect I'm one of those people, or if I'm not, I should be.)

I'll say first that, since I was diagnosed with ME and checked and found that it's not DVLA reportable condition (nor is it considered relevant by insurance companies for insurance purposes), I'm not entirely sure what the consequences are of it being a reportable condition. Do you know? What effect does that have on the driver? Does it limit what they're legally allowed to do, or does it just put insurance costs up? I'll need to know that before I can really come down on either side of this issue.

[edited for homonyms (sigh)]

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