Tuesday, December 12, 2006

Fakers, Misdiagnoses and ME/CFS

According to ME Research UK, about 150,000 people in the UK are affected by ME/CFS.

However, I believe it is highly unlikely that all of these people have the same illness. I think these 150,000 people divide up into those who have ME/CFS (whatever that is); those who have been misdiagnosed due to lack of resources; those who have been misdiagnosed due to lazy doctors; and those who are faking it. I will try to address each of these in turn.

First, I should explain what I mean by "whatever that is". The diagnoses "ME" and "CFS" sitting on a person's medical notes could quite easily be changed for "I don't know", except as a rule doctors don't like writing or saying "I don't know". It is a Dustbin Diagnosis. There is no positive test for ME/CFS. Doctors simply test for everything else they can test for that could be a candidate - multiple sclerosis, hepatitis, hypothyroidism, etc - and as more and more results come back negative, they edge closer to the catch-all.

It has also been suggested that ME is one of a number of Chronic Fatigue "spectrum" illnesses - in other words, that there are a number of distinct illnesses that medical science does not yet fully understand and has not yet developed a definitive diagnostic test for, and that as research progresses, people with the ME/CFS label will be divided up into those with ME, those with fibromyalgia, those with Epstein-Barr, and those with Smurpington's Disorder, and those with Flibbligibblititis, and so on.

With this in mind, it is probably fair to say that quite a chunk of our 150,000 ME/CFS patients - indeed, probably the majority - have ME/CFS of one sort or another.

Sadly we now move onto the other three scenarios, all of which bode badly for people who have ME/CFS.

The issue of misdiagnoses is a touchy one but one that should not be ignored. As stated this takes two forms. First, is the issue of a lack of resources. There are certain tests that the NHS will not carry out because of the cost or the time or whatever. I give you the example of someone I know personally. He is about my age and was given the diagnosis "ME" about ten years ago. Recently he managed to save up an obscenely large amount of money in order to have private tests done. In addition to the astonishingly high fees, he also had to travel across several counties to attend the centre. The private tests revealed he had Lyme Disease. Lyme Disease can be treated with a big, prolonged dose of antibiotics. He has spent the last ten years - his late teens and early twenties - living with his symptoms and being told there was nothing to help him beyond painkillers, antidepressants, and cognitive behavioural therapy (CBT). Now it turns out he could have been "cured" a long time ago. To make matters worse, Lyme Disease gets less treatable the longer you live with it - so this delay may have harmed his potential recovery.

Unfortunately it's not always the lack of resources that is the problem.

I have had a fairly wide range of tests on the NHS. I have had several sets of blood and urine tests, an MRI scan, two EEGs, and face-to-face examinations with a neurologist, a physiotherapist, and a CFS specialist. Obviously I've had nothing like the battery of tests my friend mentioned above had privately, but I've certainly had a reasonable share. I now know for a fact that I do not have multiple sclerosis, cancer, diabetes, thyroid problems, and a load of other things I can't even spell.

However I have met several people who got their diagnosis of "ME/CFS" after giving one sample of blood and one sample of urine to be tested. Their doctors have ruled out the obvious and then stopped. I don't know why. They don't know why. They are stuck wondering how to ask their doctor if they can have an MRI to rule out multiple sclerosis, without sounding pushy or paranoid. Not appearing paranoid or ranty or upset is important as there is a certain breed of doctor who ignores all recent advice and research and persists with the 1970's view of ME/CFS as "a jumped-up form of depression" that simply involves more (psychosomatic) physical symptoms. They tend to then look surprised when antidepressants and CBT fails to "cure" a person, and claim that the lack of recovery is the fault of the patient for "not taking the CBT seriously". On the contrary, many patients follow the CBT courses to the letter because they are desperate for anything that will give them their former lives back. In my experience, most of them report that while their general mood is improved and they find it easier to deal with their day to day lives, thankyouverymuch, it hasn't actually stopped the headache, the muscle pain, the swelling glands, the sore throats, the weakness and dizziness and all the rest of it.

Finally, we have the fakers. It is the fakers who utterly cock things up for people who are genuinely ill. If a faker of any illness is "found out", everybody with that illness is then treated with suspicion. A good example would be someone getting signed off work with a bad back. In summer. While the football's on. You're all raising eyebrows, I bet. But there are definitely a few people who WILL genuinely get terrible back problems - summer and football will not make people immune from having accidents - and the last thing they need is to be considered to be swinging the lead.

But fakers also damage the genuinely ill even if they are never found out at all. They skew research results. They take resources (carers, doctor's appointments, disability benefits etc) they don't need, and because the resources are finite, there's less for those who are genuinely in need. They often think they're just screwing the government, or their employer, but the fact is they are making life harder for all genuinely ill/disabled people.

Before I got sick, my circle of friends knew of one person who "had ME". She was our age, someone's sister. She had the magic version that stopped her having a job and doing housework, but didn't stop her doing much else - walking into town, spending a few hours walking round with her mates shopping and "hanging out", then getting on a train and going drinking/dancing/clubbing in the nearest city, coming home on the first train the next morning, all this posed no challenge to her whatsoever. She had amazing stamina for chasing round a playground with her nephew, pushing swings, clambering up and down climbing frames, playing football, you name it. But get her within five metres of her doctor's surgery or the JobCentre and suddenly she acted half-dead.

People like that are the reason the genuinely ill get treated with disbelief. Except for a vociferous minority who spend more energy shouting and campaigning about ME/CFS than most people spend on their jobs and families, we are not claiming to be the illest people in the world, not by a long way, and in most cases do NOT want to be treated as such. But there are some things that like it or not we need and can no longer provide for ourselves - a place to live and money for food to eat being top of the list - and it annoys me that I, and all the other ME/CFS patients, have trouble getting these because of fakers.

If I had the energy to go round all the agencies, fill out all the forms, read all the rules, jump through the hoops, go to all the appeals tribunals, wait for all the backlogs, deal with all the incompetence, and thus claim every financial benefit and bit of physical help that the government says I am entitled to, it would be proof positive that I do not have ME.


The Goldfish said...

You're spot on about an umbrella term. When I was diagnosed it was quite specific. The specialist actually said, "CFS covers all sorts of conditions characterised by debilitating levels of fatigue. ME is what they used to call atypical polio, characterised by muscle pain, parasesis, viral symptoms etc., etc.."

I met AJ through an on-line ME support group. There is no way in hell we have the same illness. He has no physical symptoms and about half the time he is as fit as a fiddle. But several days a week, he just sleeps. Unrelated to mood, or anything else, he's just completely and suddenly wiped out.

Meanwhile, I know folks who were ill for years before discovering it was Lyme's Disease, a severe sleep disorder (i.e. folks were sleeping, but not getting any REM), a Thyroid condition which didn't come up on the tests, as well as conditions like major depression and even bipolar disorder. I've known others whose ME has turned out to be an atypical onset to MS, MD, Lupus, even cancer...

There are also those who self-diagnose, which is both extremely dangerous to them and harmful to the rest of us. I have met folks who don't understand that "ME" was not my idea, that wasn't a term that I chose, but the label that had been applied to me by those eminantly more qualified than myself.

As far as social treatment, I feel lucky because my condition is and always has been quite physically manifest. People don't really buy 'fatigue' - and certainly people don't buy fatigue when it appears inconsistant; when you are fine one day but crap the next.

At the same time, I know people with very severe illness, who are so ill that people simply can't believe they can be that ill. No, that's impossible that you can't speak at all.

And people with ME suffer so much because of the stigma associated with mental ill health. If that stigma was gone, then nobody would give a flying fish whether or not or to what degree ME is effected by psychological factors. It simply wouldn't matter. Nobody chooses to have an illness and nobody can choose to be better - there are things we can do to help ourselves, that's all.

Anyway, personally, I have tried to take a step away from all this as you have probably gathered. ;-)

Mary said...

A step away is a good thing... but my friend's Lyme diagnosis was quite recent and had been preying on my mind, I think that was a big part of why I started drafting this post.

Anonymous said...

Thanks for this.
Far too often I see this kind of debate framed as "it's a REAL disease, not a mental illness" and it makes me want to bite people.

Mary said...

Hi MissPrism

I don't like the "it's a REAL disease, not mental illness" brigade because frankly mental illness is every bit as real as anything else. People who say stuff like that tend to also be of the opinion that CBT isn't worth a try and that ME/CFS is the absolute worst and most neglected condition in the whole world ever. I don't know if that is what you meant by your comment. If not then please clarify?

I couldn't even begin to start writing essays about how scientific this and medical that and research the-other PROVES that ME/CFS is 100% biological and has no psychological components whatsoever. Only scientific and medical researchers who have the academic background and work full-time on these issues can say things like that. My layman's belief is that no matter what illness you have, your physical health affects your mental health (eg you feel down when you have a bad cold) and your mental health affects your physical health (when you are stressed/depressed/etc you are more likely to catch things).

But I do feel that *only* offering mental health treatment is, for a lot of the ME/CFS spectrum, a bit... inadequate? incomplete? It seems like looking at a crash victim and saying "ok, we'll treat your concussion and your burns, and then hopefully that will take care of your broken leg."

In my specific case, I have done several courses of CBT, I'm even qualified to give one of them, the psychiatrist I saw has cheerfully discharged me from the mental health services, I generally feel pretty happy and well-balanced... but I'm still experiencing the physical symptoms, I just don't get anywhere near as upset about them as I did at first. That makes me disinclined to believe that ME/CFS is 100% psychological.

Of course, if I was (am?) delusional, I would probably by definition be the last person who was able to acknowledge it.

Anonymous said...

I just meant that, as you say, presenting 'real illness' and 'mental illness' as mutually exclusive is very harmful, and I wanted to thank you and Goldfish for explaining this complex situation without falling into that trap. Sorry if I wasn't clear!

kate said...

"it's a REAL disease, not mental illness".
what's the difference between this sort of mental illness and the sort that was written off on random reality as, for example, attention seeking or intentional?

Mary said...

Hi MissPrism
You were probably perfectly clear to anyone who isn't me. As I AM me I thought I'd check - you know me well enough to know that I am perfectly capable of writing a huge reply that has nothing whatsoever to do with the actual point. In fact that's a large part of why I got my own blog :)

Hi Kate
In the conversation on Random Reality I don't think anybody tried to "write off mental illness as attention seeking".

Mental illness is real and distressing and mental health patients/service users as well as their family/carers get a shockingly raw deal out of the NHS.

The points I was trying to make on Random Reality were:

1. While mental illness exists, it is not all-encompassing or an explanation/excuse for all people's non-standard behaviour. For example, take criminals. Plenty are of totally sound mind. They might put in an insanity plea and have it rejected because they are not mentally ill. The fact of having done something society does not approve of, does NOT of itself imply a mental illness is present. I believe there is a distinct difference between having a long-term involuntary and debilitating mental illness, and "acting up", "being bad", "attention seeking". Some of the actions may sometimes be the same but the motivation is almost guaranteed to be different.

2. We should not assume a clinical condition to exist. 1 in 3 people experience mental health trouble at some point in their lives, that is still a minority. I believe it is the wrong approach to say, "he did X, therefore he must have a mental health problem". Personally I prefer an approach of "he did X. That may be indicative of a mental health problem. Why did he do X? Has he done W, Y and Z?" In much the same way a doctor doesn't say "she has a headache therefore she has a brain tumour", they say "she has a headache. How long has she had it? What other symptoms does she have? Is it just a normal headache that will go away of its own accord?"

Or, to put my entire point into a nutshell - some people have mental illnesses, but some people just behave like arseholes for no good reason.

kate said...

yes this is true. but equally you might also say that that person hasn't got depression, they just can't be arsed to get out of bed. or if you like, some people have mental illnesses and some people are just lazy. maybe some illnesses are nicer and easier to empathise with?

Mary said...

Hi Kate

I don't think it's a question of giving different illnesses less or more sympathy, or some illnesses being harder to empathise with, or saying that Condition A exists but Condition B is made-up. The illnesses exist. The difference is between a person who has Condition X, and a person who does NOT have it.

The trouble is that there's no easy definition and for some things the diagnostic criteria shift, too. I'll use your depression example. There are many people who have severe depression to the point where they cannot face getting out of bed. There are also some lazy buggers who don't have depression or indeed anything else wrong with them, they just can't be arsed. And then there's the middle ground, for instance people who sometimes can't face getting out of bed.

Where should the line be drawn? Saying that no one in the world has depression would be incorrect. Saying that no one in the world is just plain lazy would be incorrect too. But on a spectrum of severe - moderate - mild - not ill at all, it's hard even for psychiatrists to know where to place people.

I sometimes think the difference might be along the lines of, is a person prevented from or having difficulty with doing things they want to do? If offered jelly and ice-cream for the day rather than work and bills, would they suddenly be able to get up and go with no preparation, no symptoms and no nasty after-effects?

Mr Mans Wife said...

Hi there Mary/Batsgirl,

Angela recommended your blog to me today, after explaining that you have ME, as I have also. I have to be honest and say that this post is the only one I have read so far, along with the comments, but I find your line of reasoning to be well balanced. I totally agree with everything you have said, from the mis-diagnoses to the lack of energy to chase up benefit claims. You obviously know what you're talking about!

Personally I find it a difficult subject to discuss, but I'm not sure why. Maybe because I don't want to come across as a fanatical ME campaigner, maybe because I'm sick of defending myself to people who don't believe I'm ill. Like you, I don't expect any special treatment from people or an endless stream of sympathy, I just want people to accept me the way I am but to recognise that I have limitations, and not continually question the genuineness of my symptoms.

Thankfully Mr Man is fantastic about my illness. I suppose because he lives with me so he's seen me at my best and my worst. Yes, I've been well enough to dance my socks off at a concert, but I've also been too ill to speak. The illness fluctuates, but he knows I don't fake it as I often have to use limited energy to do the things I hate and then miss out on the things I love.

Anyway, I don't know what I'm trying to say. Just I've been here and I'll come back soon!

Mary said...

Hi Mr Mans Wife

I'm pretty sure I've seen you bobbing about in the comments sections of some of the other blogs I read. It's nice to see you here. :)

I think perhaps one reason it can be so difficult to discuss ME/CFS is because there's always one, isn't there, be it a friend or a colleague or the dentist or your boss, who goes "oh, yuppie flu?" and accuses you of "getting signed off with an imaginary illness", or some similar gem of disparagement. From then on you're on the defensive and no bloody wonder.

Mr Mans Wife said...

"There's always one..." Only the one? :)

I remember this bloke trying to chat me up one day (before I was married obviously)... after asking me what I did for a living I explained that I didn't work because of my health. Then he said (and you'll love this one) "Oh, so you're a lady of leisure then" I replied with "I don't find being ill very leisurely" He realised he'd blown it and moved on to the next poor unsuspecting female...

Mary said...

Only the one? No, sometimes you get a whole collective, and it's rarely the people you'd think either.

But as for being a lady of leisure, I think I could deal with that myself. It's not exactly the definition of "leisure" I'd have given when I was fit and healthy, but I'd sooner be called that than a drain on the tax-payer, sponging off the state, claiming to have a made-up illness and so on.

Lee Miller said...

Great piece! Your friend who was misdiagnosed have they sought recompense through the loss of life through medic negligence?

Have been wondering a lot lately about using the Disability and Discrimination Act and Equality Act to force some kind of help for ME sufferers.

Agree with the entirety of you blog post.

Anonymous said...

Unfortunately you haven't done your research on this subject (or if you have, you've been looking in the wrong place).

There is new research being done in the US by a private medical institute that has pretty much proven this is a physical illness (see this: http://www.whchronicle.com/2011/06/chronic-fatigue-syndrome-misnamed-misdiagnosed-misunderstood/)

The misdiagnosis of CFS is the UK is widespread due to the NHS always playing 'catch-up' it seems. It's basically 'We don't know, and don't want to spend the little money we have finding out the true cause of why you feel this way'.

Anonymous said...


There is no such disease as CFS. Its a label for a dr as drs can't say "I don't know" and the NHS health system is deeply flawed.

Anonymous said...

The bateman horn center has lots of latest research information and clinical trial evidence that me/cfs/fibromyalgia is very much a physical and neurological illness check them out on you tube. If you look up canadian guidelines for me/cfs there is a wealth of new insights and guidlines based on clinically conclusive trails that give hope for sufferers, so far they seem to have been leading the way in the most recent research.
I became unable to work due to this illness and have a small circle who prefer to believe im just depressed and ill because im down whoooa if only they realised. I refuse to bow down to this disease that has been progressive for me. Ive thrown myself into research ...knowledge is power!
I hope mentioning a little of what info ive found on my journey for self help knowledge may help.
personaly for me things that helped.... micro nutrients = energy boost for cfs ,(watch joe cross netflix, fat, sick and nearly dead...dont let the name put you off) htp5 = enhanced mood, (anti depressants and propanol not for me) hawthorn berries capsules=helps pmdd