There seem to me to be a lot of syndromes about lately. A few days ago we watched a TV documentary about a young woman with so-called “Sleeping Beauty” syndrome; Kleine-Levin syndrome. Every so often she falls asleep, and sleeps for two weeks, at least 18 hours a day. And when she does wake up (or is woken up) she is bad-tempered, withdrawn, “not herself at all”. And then, just as suddenly, she wakes up and is a normal healthy teenager, leading her life; enthusiastic, energetic, loving. Except that her family are waiting on tenterhooks for her to fall asleep again.
And, of course, the doctors are mystified. But less so now that they can label it as a known syndrome. She has Kleine-Levin Syndrome. Phew!
Then there’s my wife, Susan. She has Chronic Fatigue Syndrome, or M.E. Except that there are many people with M.E. who get positively murderous (really; medical researchers have had death threats) if you suggest that M.E. and CFS are the same thing.
Doctors don’t know what causes CFS, either. But they are getting better at recognising it.
And I was recently deeply moved by the book “Teach Us to Sit Still” by Tim Parks. He never uses the word “syndrome” about what ailed him (at least, I don’t think he does; I’m re-reading the book, so I’ll know). But whether he does, or doesn’t, Chronic Pelvic Pain certainly ticks all the boxes to be a syndrome. (Whether or not he does, others do refer to Chronic Pelvic Pain Syndrome (CPPS)).
Now here’s the thing about a syndrome: I think we’re all looking in the wrong places for the answer to dealing with it. And that’s what I want to explore here.
So what exactly is a syndrome? Well. the word comes from the Greek, meaning “running together”, and what it is that “runs together” is a set of symptoms; sometimes tightly defined, sometimes loosely defined. It’s a set of symptoms that can be observed, but for which no “medical” cause can be found. Which leaves medical people nervous; for generations they have been thought to be the fount of all knowledge. They don’t like to say that they don’t know.
Let’s look at the normal process that we might go through, for the discovery and resolution of a medical problem in our western society.
It starts with symptom, which worries me, so I seek professional advice.
“Dr, I’ve got this pain in my stomach.”
The doctor, with her professional experience, develops a number of hypotheses as to the possible cause of the symptoms: bloating, indigestion, food poisoning, ulcer, cancer, and runs some tests, starting with the simplest and most immediate: ask some questions (“have you eaten anything different recently?”), palpate the stomach, all the through sending stool samples to the pathology lab, to ordering complex scans.
When the results come back, the doctor is able to form a diagnosis (“You have indigestion”) and offer an intervention (“Take some Alka-Seltzer and come back and see me in a week if it hasn’t got any better”).
And we are all happy. I have been cared for, my symptoms have gone, and the doctor’s skills have been validated.
This works for mechanical body faults (broken bones, sprains, torn muscles), diseases, bio-chemical imbalances, and even psychological problems. The approach is the same: collect symptoms, test hypotheses, come up with a diagnosis, design and administer an intervention. The intervention might be mechanical (surgery), bio-chemical (pharmaceuticals), or psychological (talk therapy or psycho-active drugs).
But when we arrive at the doctor’s with a syndrome, the system breaks down. The doctor comes up with all sorts of hypotheses, but all the tests prove negative: hypotheses disproven. So you are sent on to other practitioners, with other specialisms, but their hypotheses fail, too.
Eventually someone has an inkling, rapidly thumbs through the proceedings of some obscure medical journal, and comes up with a “diagnosis”: “it’s Humpty Dumpty Syndrome (HDS)”. And we all heave a sigh of relief. It’s got a name. Now I know what’s wrong with me, and the doc will be able to fix it.
But syndromes don’t work that way.
Because a syndrome is a bunch of symptoms that have been observed before in the same bunch. Or similar bunches. I doubt that any two sufferers of Chronic Fatigue Syndrome have precisely the same set of symptoms.
And with a syndrome, there’s nothing to test for. If you’ve got a broken leg we can do an x-ray, and the break will show up. If we think you might have flu, we can send sputum samples to the path lab, and they will be able to spot the little invaders under the microscope. But with a syndrome, there is no positive diagnosis. All the doctor can do is to test for all the other things that it might possibly be, and when it proves to be “none of the above” then you can be pronounced to have HDS.
Many doctors are so immersed in the standard protocol of symptom-hypothesis-test-result-diagnosis-intervention-cure, that they can’t bear for that protocol not to work. They have to find a cause. If it’s not medical, or surgical, maybe it’s psychological. Maybe you’re just imagining it, or you’re not right in the head. We’ll send you off to the shrink. Or maybe it’s behavioural: you’re just swinging the lead. Or maybe it’s moral; you’re just a weak character.
One final path left open to the medical professional is to carry out the intervention for which they are known; where their expertise lies. Tim Parks saw prostate experts, and they wanted to operate on his prostate, even though all the tests said that his prostate was just fine. I know a newly-wed young woman who was worried about the physical side of her new relationship. Unfortunately the medical man she went to see was a trained surgeon, and his answer was to take a knife to a part of your anatomy where no-one would want a knife. It did answer the immediate symptoms, but severely exacerbated the underlying cause.
Syndromes make us, the patients, feel better too. Now my condition has a name I can wear it with pride. I no longer have to put up with people telling me I’m imagining it, or am being lazy, or have a defect in my character. No! I have Humpty Dumpty Syndrome! And there’s no-known-cure, so get off my back!
Chronic Over-Eating Syndrome
I have recently identified a new syndrome, which afflicts me. Most people would say that what afflicts me is obesity; I say “no”! Obesity is the symptom. Eating when I’m not really hungry is a symptom. Eating late at night when there is no-one else around is a symptom. High blood pressure and ill-fitting and ugly clothes are symptoms. What I have is COES: Chronic Over-Eating Syndrome.
And what does this discovery do for me? Well, it defends me against accusations of greediness, lack of self-control, of being a fat slob, of moral defect and unconcern for the starving people of the world. None of these accusation carry any weight any more, for I have COES, so there!
In our modern medical world, especially in the west, and especially in societies that have socialised medical provision, once we have called up to make an appointment, and turned up to our doctor’s surgery, we’ve pretty much done our bit. The matter is out of our hands. If the doctor suggests something radical, like a lifestyle change, we say, “Awe, doc! Can’t you just give me a pill?”
Of course, I wouldn’t say that; I’m too intelligent. I know that no pill is going to cure COES. In fact by any normal statistically significant measures of efficacy, there is no known cure for COES. Many people have lost weight on this or that regime, but precious few have conquered COES, as is shown by the recidivism figures. Obese people often joke that there’s a thin person inside trying to get out, but we all know that when a fat person manages to get thin, the truth is that the original fat person is still inside, and sooner or later he or she will re-emerge, probably fatter than before.
Many doctors will prescribe life-style changes, entirely superfluously. Because if you’re intelligent enough to recognise that you’re overweight, then you’re intelligent enough to know that you need to eat less, and exercise more, and you don’t need to waste the doctor’s time to go and hear it.
And you know it’s not that simple. Go and ask any doctor if they have any figures for compliance when they prescribe life-style changes to patients, whether it’s the obese, or those with lung problems who are smoking, or heart patients. The prescription of life-style changes has a very poor record of success.
So what am I to do with my COES? Just accept that I’m a fat slob, and get on with my life, resigning myself to voluminous clothes, heavy grocery wills, and difficulty standing up from low chairs?
Or is there some other possibility? Well, before the syndrome there is blame. You are being lazy, swinging the lead, avoiding life’s responsibilities. After the syndrome there is no blame. It’s not my fault, I have CFS. Or, in my case, COES. And I’m not kidding: THERE IS NO FAULT HERE.
But there is responsibility. And there is something that we can do. Or, rather, a whole set of things.
On Sitting Still
I believe there is an answer to many syndromes, and I believe Tim Parks found it. Having had every possible medical test for every possible hypothetical cause of the pains he was suffering, he refused to have surgery for a condition that the tests showed he didn’t have.
He really wanted to find an expert who could identify a medical cause and who could prescribe an effective intervention, but it didn’t happen.
Eventually he found a crazy, implausible, unbelievable process, that couldn’t possibly have any relationship with what ailed him; Chronic Pelvic Pain. But it didn’t fit the “find a fix” model. In the “find a fix” model someone finds and applies the fix, and you get back to living your life. But in Mr Park’s case that didn’t apply. What was wrong was his life as he was living it. What was needed was a fundamental change to his belief systems, and to the way he lived his life on a daily basis. He found a process that couldn’t be applied as a Band Aid, but which had to become “the central curriculum of his life”. And when his life changed, so his body began to change, and the symptoms began to recede. But he isn’t cured. If he goes back to living the life he used to live, then his body re-adapts to that lifestyle, and the pains return.
He is working to make this new state of being “the central curriculum of his life”.
Now that really is tough, isn’t it?
But it suggests that whatever you find that might address the problem that you have, won’t address it if you approach it as a Band-Aid. Meditate occasionally, go and see a therapist or a hypnotist for an hour a week. Cut back on the carbohydrates a bit, and go for a stroll on a Sunday afternoon. That won’t cut it.
Two years ago I lost 100lbs in weight (45kg) and a part of that was going for an increasingly long walk every Sunday, and increasingly long, but shorter, walks during the week. I was on a roll with my project to walk the entire length of the Test Way as a series of circular walks. We did it; by the time we finished we’d walked 175 miles. But that was the problem. We finished. I remember one Sunday my wife saying “I’ll be glad when we can get back to having a normal life, normal Sundays”. I didn’t think much of it at the time, but now we are back to a normal life. We no longer walk 15 miles every Sunday. And I am back to my “normal” weight and body shape. And she has CFS.
For a while, walking was the central curriculum of our lives, and we were fit, getting fitter, and happy. But we let it slip, and our bodies re-adapted.
Wanted: 36 Obese People
I want to put that phrase in an advert in the newspapers, on Facebook, in magazines. Because I want to work with a group of people so that we help each other to make being fit, healthy, and of a healthy body shape and weight the central curriculum of our lives.
One of the problems with making something the central curriculum of your life is that you will lose touch with your friends. If you discover golf, and take it up with a passion, and want to get good, golfing will become the central curriculum of your life, and you will lose touch with your non-golfing friends. Now, that’s not too painful, because you will acquire friends for whom golf is also the central curriculum of their lives. You won’t be lonely.
But Chronic Over-Eating Syndrome is more complex than golf. It may be the most complex syndrome that humankind is faced with. Sure, you will have to eat less and exercise more. But you will also have to deal with all the emotional, psychological, spiritual and social things that come up. There are lots of protocols for dealing with this stuff, but again, they can’t be applied in a Band-Aid fashion. They all have to become the central curriculum of our lives.
I have acquired a huge amount of knowledge, skills and experience over my 63 years. I am convinced that I have more than enough to conquer my COES, if only I could make them the central curriculum …
So my proposal, to the 36 people obese people who answer my advert, is this. We will go away for two residential, weekend workshops, two weeks apart. During these workshops we will forge unbreakable support relationships between one another, and will learn a complete set of knowledge, skills and attitudes that we will use. These include emotional skills, psychological skills, awareness skills, even spiritual practices, mutually supporting skills, as well as information about diet, exercise, etc.
And then we will go away on a 16-day residential retreat where we will make all of this the central curriculum of our lives. After the 16 days are over, we will remain in constant, frequent contact with one another, including meeting one day a month for the next year to walk together.
Once we have all reached our goal weight, we will again go into a 16-day residential retreat, because now we have a different curriculum to make central to our lives, and that is maintaining our healthy selves.
We will continue supporting each other for the rest of our lives, making freedom from obesity, freedom from COES, freedom from any other syndrome, the central curriculum of our lives. If you would like to know more, check out this page. Be aware that, although the content of all the events is worked out, we’ve a way to go with the actual organisation!