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

Hip

Senior Member
Messages
17,820
@Scarecrow
Maybe that statement could have been accompanied by the acknowledgement that many ME/CFS patients are able to drive safely, but I guess when discussing the law, this is usually about restrictions, and what you cannot do.



My only comment on any MEA driving advice that is eventually included on the MEA website would be to note that there is mild, moderate and severe ME/CFS.

I would think virtually all mild ME/CFS patients would be able drive safely, and many mild patients are able to perform full or part time work.

I would also think that most severe ME/CFS patients will not be able to drive safely.

So perhaps the gray area resides in the moderate ME/CFS group, where ME/CFS symptoms begin to get significant enough to impinge on your driving ability.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
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?
That was the case when I was "midly" ill.

At some points I could drive some times and not others, so I just used my own judgment.

Then I got more ill and I could no longer pay attention to traffic, etc., especially while also trying to find my way. Simultaneously, was having muscle problems using the steering wheel (even though it was power steering), and not able to work much (so car insurance, for example, was becoming a problem). And occasionally even on better days would get someplace and not be doing well, but still would need to drive home.

So I quit driving and didn't renew my license.

In the US, we have other options for government-issue ID: state-certified photo ID (same form as a driver's license, easiest to use) or passport (goes longer between expirations, and does not require a trip to DMV, which always requires a wait of some hours in person in the office in my city). Best to keep something up to date.

Also options for travel may include paratransit service (bus for the disabled: goes where a regular bus goes, has a wheelchair lift, but it's a shared ride and takes a long time, may be an old, jouncy bus; fee similar to normal bus), and Medicaid (those who qualify can get free taxi to medical appointments, unshared in my state, and if they have a carer can use scheduled carer hours for shopping). Medicare will cover ambulance only (with copay), and carer only if the patient receives medical services (skilled nursing care, doctor visits, physical therapy, something like that) at home (not sure about copay for that). This all may not be available everywhere.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I can't imagine any scenario in the US where an ME/CFS patient would have to alert the DMV as the DMV is already so overloaded as it is, it's the last thing they'd want to be forced to deal with.
On the renewal form they send in the mail, they ask if you are safe to drive or have any condition that would make it unsafe. So I sent mine back with the "unsafe" box ticked. I had already stopped driving and got rid of my car. Without the license I could cancel my insurance without being considered to be an "uninsured motorist" (illegal, and it makes car insurance expensive if ever needed again). But if I ever recover, I will have to retake the exams, I suppose.
 

Gingergrrl

Senior Member
Messages
16,171
On the renewal form they send in the mail, they ask if you are safe to drive or have any condition that would make it unsafe. So I sent mine back with the "unsafe" box ticked. I had already stopped driving and got rid of my car. Without the license I could cancel my insurance without being considered to be an "uninsured motorist" (illegal, and it makes car insurance expensive if ever needed again). But if I ever recover, I will have to retake the exams, I suppose.

Thanks @willow and I was thinking more of a scenario where a patient or doc would be forced to alert the DMV b/c someone was diagnosed with CFS (and often misdiagnosed for that matter) vs. someone voluntarily deciding to surrender their license. In my state docs are mandated reporters to the DMV for Alzheimer's and certain conditions but the thought of that applying to CFS was horrifying to me. Just my opinion!
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
In my state docs are mandated reporters to the DMV for Alzheimer's and certain conditions but the thought of that applying to CFS was horrifying to me. Just my opinion!
I agree with that. Lots of people with this diagnosis would be able to safely drive, although many are not. The patient should weigh it carefully and decide.
 

Sean

Senior Member
Messages
7,378
This statement:

is nowhere balanced by any acknowledgement that many pwME are able to drive safely.

I agree with that. Lots of people with this diagnosis would be able to safely drive, although many are not. The patient should weigh it carefully and decide.

That is an important point.

I might be much more restricted in my driving, but because I have adapted to and allowed for that I believe am still on the right side of safe, and my driving safety record would back that. Avoiding heavy traffic, night time, frequent or long drives, bad road or weather conditions, and driving when I am at my sickest, is covering it for me so far.

It is kind of self-limiting anyway, I don't have the stamina to drive much more than absolutely necessary at the best of times.

It has got noticeably worse over the last few years, and if the combination of poor and declining health, plus normal ageing, make it unsafe to drive, I will 'voluntarily' stop driving, and that point is probably not too distant in the future. It will require some alternative arrangements, which will not be so easy or convenient, but I will cross that bridge when I come to it. With a bit of luck self-driving taxis will be all the rage by then. :thumbsup:
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
@Scarecrow
Maybe that statement could have been accompanied by the acknowledgement that many ME/CFS patients are able to drive safely, but I guess when discussing the law, this is usually about restrictions, and what you cannot do.
MEA have a duty to give clear, factual advice. At this point, the OP may contain misinformation.
My only comment on any MEA driving advice that is eventually included on the MEA website would be to note that there is mild, moderate and severe ME/CFS.
I never use the MEA website unless someone gives me a link so that I can get in and out as quickly as possible. (Visual problems - not related to ability to drive ;).)

IF the information on PR is not correct - and at the moment it's looking like we've been told we should inform the DVLA if we have ME - it would be nice if it was corrected here.
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
A few scattered comments:

I think that Charles has tried to be helpful, and some people are perhaps being overly defensive and picking through his words too meticulously. It's easy to get a tiny bit of wording slightly wrong or open to an unintended interpretation, or miss something out.

I think that a lot of UK doctors would be quite puzzled if approached by an ME patient asking whether s/he should be driving. Most of them seem to have no idea what the illness is. Many of us never even discuss the illness with them as we know the likely reaction - disdain, ignorance, etc. So for many of us it would be self-report or nothing.

I don't have the confidence that @Hip seems to have in doctors when he says "Although strictly speaking it's presumably not whether you personally consider your driving is safe or not (if it were just down to your personal judgement, you could never be prosecuted!); there presumably must in principle be some objective or external measure of driving fitness, such as a doctor's opinion."


As my numerous doctors have not only been very wrong many times, but have also repeatedly made verbal and written statements about me that are untrue, despite my vehement disagreements, I would rather trust my own judgement, which at present is that I am not well enough to drive (even if I could afford to).

But ME is often relapsing/remitting. Are the DVLA going to be happy if we contact them repeatedly as we relapse and remit? Do they keep rescinding and restoring our licences? How long would that even take?


I wonder what the situation is with migraine. I have recently started getting these - not sure if it's a new ME symptom - but no way could I drive with that. Obviously one would try to pull in somewhere if it happened, but it tends to hit without warning, and one never knows where one might be when it does. That would be terrifying, for me at least. I get numbness in my arm and face, aphasia (can't read, write or speak the right words), sometimes fever or extreme cold - thus shivering, visual disturbances and sometimes a blinding headache. How could I drive in such a state - even to get to a lay-by or other safe area?

And let's not forget PEM. How often is it that we feel OK some days, but definitely too ill on others due to overexertion? What do we do then?

Another problem could be muscle twitches/myoclonus, which numerous people on PR have reported. They are unpredictable in my experience.


I like @Sean's idea of autonomous taxis. Maybe just autonomous private cars would do - once the legal bods have figured out who would be responsible in an accident.

Or maybe someone could finally get our public transport up to scratch. Despite some sterling efforts, it has got mostly worse and worse over the past few decades. It's 15 miles to my nearest station, and some buses don't even run every weekday, whilst others are once or twice a day if you're lucky (e.g. if the driver can be bothered to turn up!). As for bus stops - mostly you have to find out by word of mouth where the bus stops - there is no actual bus stop. Wait in the wrong place, then the driver will expect you to run to the right place, exhausting you before you start...and as for accessibility - well, some buses have it.

See how the other half 'lives', drivers.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
I think that Charles has tried to be helpful, and some people are perhaps being overly defensive and picking through his words too meticulously. It's easy to get a tiny bit of wording slightly wrong or open to an unintended interpretation, or miss something out.
All in all, I agree with your post but, as it's fair to assume that I'm one of the people you refer to, let me assure you that I am not being defensive. I'm simply asking for clarity where confusion has been caused.
 

Hip

Senior Member
Messages
17,820
I don't have the confidence that @Hip seems to have in doctors when he says "Although strictly speaking it's presumably not whether you personally consider your driving is safe or not (if it were just down to your personal judgement, you could never be prosecuted!); there presumably must in principle be some objective or external measure of driving fitness, such as a doctor's opinion."

It's not that I am deferring to a doctor's judgement; a patient's judgement as to whether they are safe or not drive may be more accurate in many cases; but I was just pointing out that if legally we went by the patient's judgement, no patient could even be prosecuted for driving unsafely, no matter how dangerous they were, as the patient would always say "I am fine to drive".
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
It's not that I am deferring to a doctor's judgement; a patient's judgement as to whether they are safe or not drive may be more accurate in many cases; but I was just pointing out that if legally we went by the patient's judgement, no patient could even be prosecuted for driving unsafely, no matter how dangerous they were, as the patient would always say "I am fine to drive".

I'm not sure about this. A person can be convicted of dangerous driving:
A person drives dangerously when:
  • the way they drive falls far below the minimum acceptable standard expected of a competent and careful driver; and
  • it would be obvious to a competent and careful driver that driving in that way would be dangerous.
https://www.cps.gov.uk/news/fact_sheets/dangerous_driving/

The key factor appears to be competence. A doctor won't necessarily know that.
 

L'engle

moogle
Messages
3,187
Location
Canada
I would think diabetics who don't control their blood sugar well, alcoholics, and people with various other things that require self monitoring would be higher threats to road safety than ME patients in general. As well, 'cognitive dysfunction' can mean continual brain fog/dementia or it can mean limited mental stamina that allows for short sessions of normal activity. I doubt if many ME patients below mild would be fit to take a professional full time driving job, but going out here and there for food, social interaction and just being outside the house in manageable chunks is within reach of many on good days.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I would think most non-severe patients would be more closely analogous to Lupus (can have severe fatigue, brain fog, and neurological problems; symptoms can fluctuate) than to epilepsy or Alzheimer's. Severe patients wouldn't be driving, anyway.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
I'm not sure about this. A person can be convicted of dangerous driving:

https://www.cps.gov.uk/news/fact_sheets/dangerous_driving/

The key factor appears to be competence. A doctor won't necessarily know that.
This is related to the point I made earlier that a prosecution for a car accident is extremely unlikely to follow just because you have ME/CFS and didn't tell the DVLA. I wasn't meaning that you are unlikely to get caught for supposedly breaking the law, I was meaning that unless you are unfit to drive and therefore cause (or reasonably fail to avoid) an accident then there is no law broken in the first place.

Regarding the doctor making a judgement call, @charles shepherd posted a summary of the guidelines earlier which I assume came from here (https://www.gov.uk/current-medical-guidelines-dvla-guidance-for-professionals), along with the text for clinicians which says:

The information is intended to assist doctors in advising their patients whether or not they should inform DVLA of their medical condition and what the outcome of medical enquiries is likely to be.

In the interests of road safety, those who suffer from a medical condition likely to cause a sudden disabling event at the wheel or who are unable to safely control their vehicle from any other cause, should not drive.

My bolding.
If you had to inform the DVLA of any illness such as ME/CFS (regardless of fitness, simply because you have it - as the MEA wrongly believe and advise) then this sentence wouldn't be there.

It is clear that there is no arbritary requirement for the patient or their doctor to report their having ME/CFS. It is about fitness to drive, and the question of whether or not a patients illness(es) are 'likely' to impair that ability. Many people with ME/CFS are not likely to get a 'sudden disabling event at the wheel' and can 'safely control their vehicle from any other cause'.

Fitness to drive is all the DVLA actually care about, not whether you have ME/CFS.
 
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GlassHouse

Senior Member
Messages
108
I know this is an old thread, but has anyone else had their license forcibly taken from them?

I had a sleep study done in 2014, which showed idiopathic hypersomnia. Based on that, my license was suspended by my doctor. I tried all the stimulants but couldn't tolerate any of them, nor did they help with the fainting, sore throats, or gallbladder failure/ liver failure (inflammation and ascites, which is still not controlled).

For 2 years I biked at least 8 miles a day, up to 20 a day, to get to work and dr appointments. Then I had a 2-day CPET and was told I would end up bedridden if I continued to bike.

I now have to walk very slowly (to keep heart rate under anaerobic threshold) to get to/from work. I am not considered disabled enough for the disability van and there is no public transport.

I have been in serious decline for all 5 years since this started and especially since the CT showing liver inflammation 1 year ago. I have tried everything to get my license back, but the 8 different neurologists I've seen have all said I am far too impaired to drive. They also said I should absolutely be working full-time and it is ridiculous that I am talking about disability at 26.

If I leave my job then I lose my insurance, which I need to pay for tests once I make it to the top of the waitlist to see Peterson. Plus, my last hospital bill from when I was in sepsis from C. diff was 70k, which I would not have been able to afford without my current insurance.

My parents had me late in life so they are retired and unable to support me. I live with my boyfriend, dating for 5 years living together for 3, and I could be on his insurance if we got married, but he says he doesn't want to get married until my health is more stable (not in/out of the hospital). But my health is declining because I need insurance and I need to work for the insurance, and I need to exercise to get to/from work because doctors suspended my drivers license.

Sorry to rant.

I would be less obsessive over the whole thing if I weren't also harassed by my coworkers for 2.5 years straight over my "made-up health problems." I've had surgical tools stolen and experiments sabotaged in addition to 1-2 emails per month asking our boss to fire me. I am thankful that our boss is on my side. But it's an endless battle to make sure I never actually mess up at work so I can disprove their claims. I can't leave since I can't drive and I have to keep using FMLA for when I'm in the hospital.
 

*GG*

senior member
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6,389
Location
Concord, NH