M.E. is one of the most abused diagnoses of the last Century and the disease is definitely the most misunderstood, neglected and fought-over of our time. For many years I’ve avoided the politics of M.E. because of any topic it’s the one that can make my blood boil in a nano-second and the stress isn’t good for my health. Having said all that, it’s still worthy of a post (but I’m not going to make a habit of it).
The reason it’s worth a post is that many of the people I’ve come across over the years with a variety of other diseases, eg. Ehlers-Danlos, Lyme, Lupus, Sjogrens, Coeliac and many others, were initially diagnosed with Chronic Fatigue Syndrome before the real cause for their fatigue was found and their diagnosis was changed. Over recent years M.E. has been reclassified as CFS and the diagnostic criteria watered down to such an extent that anyone with unexplained chronic fatigue whose standard blood tests come back normal is labelled as having CFS. It’s wrong on so many levels.
When I was first diagnosed with M.E. in 1994 I’d barely heard of it (there was no internet then so access to information was much more local and limited). I was just extremely fortunate that my GP was the one Doctor in the practice clued up on the disease, which was as rare as hen’s teeth back then. As I had an obvious viral onset she first diagnosed me with post viral fatigue syndrome, and when I hadn’t recovered after 6 months this was changed to M.E. I had all sorts of investigations and blood tests which were all clear, and my symptoms were classic M.E.
There have been several sets of diagnostic criteria over the years used to diagnose M.E., which I’m not going to go into – if you’re interested just Google them. When I was diagnosed you had to have the following:
- Viral onset of symptoms.
- Post-exertional malaise.
- Post-exertional fatigue, with delayed onset (often by 24-72 hours) which persisted for several days following activity and was unrelieved by rest.
- Fatigue which curtailed the activities of normal life by at least 50%.
- Unrefreshing sleep (understatement of the century!)
- Cognitive dysfunction: ‘brain fog’, poor short-term memory, problems with information processing and problems with concentration.
- There were also minor criteria which had to be present, such as new onset sleep disturbance, headaches, pain, nausea, paresthesia, sore throat, tender lymph glands, chronic flu-like symptoms, orthostatic intolerance and several others.
- Symptoms had to have been present for at least 6 months and all other causes for the symptoms had to be excluded.
However, as I’ve previously stated, the past 18 years has seen the diagnostic criteria change and the illness re-branded as Chronic Fatigue Syndrome. The cardinal feature of post-exertional malaise is now gone, and the emphasis is on fatigue. Not the classic post-exertional and delayed onset fatigue of M.E., just chronic fatigue in general. Diagnosis no longer excludes people with mental health issues and activities no longer need to be curtailed by 50%. A woman in my village told me 2 years ago that she’d been diagnosed with M.E., yet she still works full-time and last year went on both a skiing holiday and walked the Great Wall of China. Whoever diagnosed her needs the sack.
Under the new and broader diagnostic criteria with its emphasis solely on fatigue, 40% of people are diagnosed as having M.E. when they actually have another disease, such as Ehlers-Danlos or Lyme. In being incorrectly diagnosed patients are missing out on treatments and management advice which might help the disease from which they’re actually suffering.
Another reason the diagnostic criteria is so important is that researchers will never get to the root cause of M.E., and ultimately find a cure or effective treatment, if they’re studying people who don’t have the disease to start with.
Chronic fatigue is not M.E.. The number one diagnostic marker for M.E. is post-exertional malaise coupled with delayed fatigue and pain which lasts for several days after the event, no matter how much you rest.
No-one I know with strictly defined M.E. is in full-time employment, and the majority aren’t in employment at all. They are all largely housebound and in many cases virtually bedbound. Prognosis for full recovery in strictly defined M.E. has been estimated at about 7% and these are often children who are more likely to recover fully due to the fact their immune systems are still under-developed. M.E. is a very serious disease, with profound impact on ability to function and often leading to substantial disability. It can also kill, and M.E. has been cited as the official cause of death for several people here in the UK.
I’m vaguely aware that there has been a huge debate in recent years in the USA about changing the name of CFS to something else. Patients here in the UK hate the name too, and reached a compromise with the medical establishment by calling it CFS/ME which neither side is happy with. However, we’re focusing on the wrong issue. It’s the diagnostic criteria which is the problem and the reason so many people are being mis-diagnosed. We need to tighten the diagnosis back up to strictly defined M.E., and anyone else with unexplained chronic fatigue needs to be separated from this patient population. You wouldn’t study and treat people with brain tumours in the same way you’d study and treat people with a headache, yet that’s exactly what’s happening to the M.E. population – and then we wonder why, in 20 years, we’re getting nowhere in finding out the cause or any effective treatments.
For a description of life with ME see this wonderful blog post written by a sufferer of many years.