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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,
![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
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.
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.
