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.