Or, why `CFS’ is a foolish thing to diagnose anyone with, and shouldn’t be permitted.
I’ve been making my way through the book “Recovery from CFS” (Alexandra Barton). It’s taken a lot longer than usual due to fatigue, but I have finally reached the end. This book seeks to reassure people who have been diagnosed with CFS that there is hope for recovery, by having a series of biographical tales from people who have recovered from CFS. However – although I do firmly believe that there is hope for recovery from ME – the vast majority of people in this book have just been misdiagnosed.
Well, I say `misdiagnosed’, but the medical profession keeps changing what CFS means; right now it seems to be a description for a collection of symptoms. Kind of like clubbing together all the people with stomach upsets, IBS, coeliac disease, bowel cancer and pregnancy into a diagnosis of `Chronic Uncomfortable Abdomen Syndrome’.
Really, this book is a collection of various stories of people who have struggled with what they were told was CFS, but generally turned out to be something else. Notably, this includes the author – who it turns out has coeliac disease. Her “recovery from CFS” was actually “learning to live as a coeliac” – not really helpful for those who have ME. Of course, a few of the entries were people who did seem to have ME, and over a long period of time paced themselves to recovery, or just started (slowly) getting better.
What seems important to me is this – if you have been diagnosed with CFS, you might instead have something very easy to spot and treatable, that was never diagnosed! So what were these people all suffering from? If you’re into graphs, today is your lucky day! (Note: I’m not a medical professional; this is my point of view taken from what the people in the book said were the cause, the symptoms and the cure.)
The first graph shows the 50 `CFS’ sufferers, and what they actually had. The second one is the other way around, and perhaps more useful; the various illnesses that were causing the CFS symptoms, and how many patients had it. It adds up to more than 50 because a few patients had several things wrong; for example being sensetive to both food and chemicals. As you can see, there’s a whole variety of things going on here, and in my opinion most of these problems should have been caught or checked for very early on. Click to see full-size; scroll down for some more….
So these next two graphs are the same data set, but grouped differently. This time, instead of all the random various problems, I’ve grouped them into very broad sets. Those whose symptoms were caused by allergies/intolerances/sensetivities, those who had a virus, those who had ME, those who had some other curable physical ailment etc. I think these broad sets better show how differently each group of patients should have been treated and how diverse the causes were. Click to see full-size; scroll down for some more….
Lastly, this graph shows the number of patients who had ME, and the number who didn’t:
Now, obviously this data set is small, and consists of almost entirely recovered people (ie: it’s skewed), so it can’t be used to illustrate how often this awful misdiagnosis occurs. But it obviously does. So what’s my point? My point is this: that right now, diagnosing people with CFS is entirely unhelpful. Some of these people have a real, debilitating, physical condition called ME, which can kill them. Some of them are allergic to wheat. These people should not be grouped together under the same diagnosis! Telling the person who is stuck in bed with ME that they have ‘CFS’ and telling the person who won’t admit they are depressed that they have ‘CFS’ just leads to reinforcing the common misconception that ME is actually mild depression.
The current basis of conducting trials for ME with our ‘CFS’ diagnoses is also entirely flawed. Including this vast array of people, some of whom clearly do not meet the criteria for having ME, is going to skew any trial data. You can see how some people claim that GET and CBT work for ME: it’s because the trials used ‘CFS’ patients who actually had depression. In the same vein, other treatments like exclusion diets, better nutrition and moving to the countryside are all toted as cures for ME. They’re not; they’re treating a different condition that should never have been put into the same group as ME. Yes, coeliac sufferers, those who have had breakdowns and people who accidently ate their mercury fillings all experience fatigue. But in the same way, people with brain tumours and people who have recently imbued a lot of alcohol both have nasty headaches and nausea. Don’t say they have the same thing; it won’t help anyone.