The use of the labels ME, CFS, ME/CFS

When I got and stayed severely ill for 5 years after a severe respiratory virus in February 1983, things were very different, indeed out of all recognition, from now. It was called ME among doctors who knew about the phenomenon of staying ill after a virus with the set of symptoms I had, which did include inflamed-feeling brain & spine, and marked muscle myalgia after physical exertion (plus gastro dysbiosis and cardiac hiccups). A few doctors told me they understood the situation, saying 'These things often start with a virus' and that 'it usually goes away within 2 to 5 years'. So some doctors did know about this back then.

The only definition at that time was the Ramsay one, which described my symptom set well. His one reference to fatigue was about quick and easy muscle fatiguability after exertion, not constant generalised fatigue. 'Fatigue' was never my main symptom. I don't recognise myself in the current definitions of 6 months unexplained fatigue plus optionally a few vague symptoms. (Am glad that at least PEM was recently added but it looks like doctors think that simply means increased 'fatigue'.)

Then along came the 'Yuppie Flu' churnalism in the press a couple of years after I got ill which I can only guess was some coordinated agenda to make ME look trivial, followed by the psychiatrists putting themselves forward as experts on a condition they knew nothing about, psychosomaticising it with the goal of making it look even more trivial. Thankfully at around that time (1988), I got cured of ME by off-label use of pharmaceutical drugs. This was not by some alternative private quack or similar, but my own NHS GP who wanted to help me. Yes, GPs could do that back then, there were no NICE Guidelines, doctors back then could think for themselves. It was a whole different world from now. My GP tried some drugs according to biomedical research on ME that was being reported in the news at the time, and miraculously it worked. I was able to go back to work, only part-time and had to rest a lot and pace myself social-life-wise, but fantastic after 5 years of severe illness. By 1990 I had made a full recovery and I didn't keep up with any further news about ME, I just wanted to forget it ever happened.

Then in 2005 I got struck down again, by a gastrointestinal virus, and ended up with severe ME worse than I'd had before. Feeling confident that a cure had been discovered by now, so that I could get back to my job ASAP, I did some googling and was horrified to find that not only had no progress been made, but it had all gone backwards big-time. ME was now called 'CFS', CBT & GET were the only 'treatments' for it, which I knew couldn't possibly help ME and were complete nonsense, and the definition of 'CFS' was now just 6 months of unexplained fatigue. What about the sensation of brain & spine inflammation, the muscle dysfunction, the cardiac arrhythmias, the extreme gut infection/dysbiosis symptoms, and more? Nope, just 'fatigue'. So now people who are fatigued but don't have the other symptoms of classic ME, got added to a vague new invented diagnosis, CFS, along with those who do have the classic ME symptoms, and it's all a shambles. No wonder nobody can find a biomarker, with such a mixed group.

In any case, that's a bit of first-hand history of how things were 40 years ago. There was plenty of research going on back then which soon got swept under the carpet by the psychs and their enablers. Now new bio researchers are finding all the same roads to go down thinking they've discovered something new, when it's the same as what researchers were finding in the 1980s before the psychs barged in. But let's hope it 'sticks' this time and doesn't get quietly dropped again.

The WHO classified ME as a neurological illness in 1969. The psychs tried to get that removed and have it reclassified as a mental illness, but thankfully the WHO didn't cave in to that.

 

I can understand that it would seem like that if you were in contact with one of a small number of doctors who shifted the meaning early in this way. However, in the 1970s and early 1980s my mother was the virologist in charge of EBV at the Central Public Health Lab at Colindale which monitored EBV infections across the country. I was a junior doctor. We met weekly for dinner and I remember conversations about post-viral fatigue being common with EBV and the fact that she had diagnosed it in me ten years before. I also remember her referring to myalgic encephalomyelitis or 'Royal Free Disease' as a postulated new viral illness that she and her colleagues could never substantiate. Admittedly she saw it from the virological side but I was getting the same message from colleagues at UCH, Guy's and Bart's.

I am sure that some doctors did shift the meaning of ME to cover post-viral fatigue but if the WHO classified it as a neurological disease in 1969 I think it likely that they thought they were logging Royal Free Disease, since ME/CFS as we now know it, or if you like ME as we now know it, does not have any specific neurological features. Muscle aches and pains and swollen glands, headaches and inflamed feelings occur with flu and we don't call that a neurological disease.

I think it matters because people being told they have ME are still given the impression that they have some sort of neuroinflammatory disease and we don't have evidence for that. I worry similarly about patients being told they have problems with oxygen delivery when we have no evidence for that. It distracts everyone from the actual clinical problem and how best to cope with it.

 

That's so interesting to see it from your mother's viewpoint, thank you. I was lucky to get a few understanding doctors, and yes, they did think it was the same thing as Royal Free Disease, and indeed I got referred to the Royal Free Hospital. I did see a few doctors at first who were very patronising and insisted I had 'anxiety' and/or 'depression' and refused to consider that what I had was physical; I had to change GP three times before I found the one who took me seriously. Yes, later in the 1980s some doctors were considering EBV as a cause, but I've never had EBV.

Yes, the meaning of ME has shifted out of recognition since back then, muddying the waters so much that I despair of ever seeing a biomarker and/or actual curative treatment in my lifetime. Here's hoping DecodeME finds something.

Thank you for taking an interest in this wretched subject, very grateful for all you do!

 

And thank you @EzzieD, for the first hand perspective. Gradually, I think I get an idea of what is special about this disease. If I can get a clear enough idea to persuade my younger physician colleagues to take it seriously I shall feel I have been of some use.