I see a lot of patients with the diagnosis of “Chronic Fatigue Syndrome” or “ME”. I probably see a lot of them because most the health service doesn’t quite know what to do with them and, like most patients who come to Glasgow Homeopathic Hospital, everything else they’ve been prescribed hasn’t worked for them.
However, it’s a hugely contentious illness. Some people don’t even believe it exists. Others dismiss it as a psychological problem at best and a frank psychiatric problem at worst. Why is that? Well, the key reason is there isn’t a test for it. The biomedical model of illness recognises problems with objective, measurable “abnormalities” – preferably in some tissue somewhere. It’s actually a rather old-fashioned way of thinking about illness – as if it’s an entity which can be observed, measured, then expelled or conquered; an entity which is some kind of alien presence in the human body. Modern, complexity science has shown us that illness is about maladaptation or malfunction somewhere within the complex, and that measurable, objective pathologies are more often the results not the causes of illness. Beware the doctor who names your illness with the word “syndrome” attached – chronic fatigue syndrome, irritable bowel syndrome, irritable bladder syndrome, premenstrual syndrome, idiopathic urticarial syndrome – if it’s called a syndrome, you can be pretty sure medical science doesn’t really understand it.
If there’s nothing measurable, the physicalists tend to prefer to conclude “there’s nothing wrong”. But when a person is incapacitated by pain, fatigue and other symptoms there is certainly something wrong! To assume that must be a mental problem is very wrong-headed and often ostracises and stigmatises the sufferer.
For those who can’t quite manage to believe the stories patients tell, there is some hope. Scientists claim to have identified seven genetic types of ME. Each type (genetic pattern) seems to be related to a particular pattern of ME symptoms –
Type one had the worst anxiety and depression levels, along with poor sleep and high pain levels. Type two was characterised by significant post-exercise fatigue and joint and muscle pains, while type three was the mildest form of the disease. The research identified type four as linked to moderate levels of body pain and sleep problems, with type five having stomach complaints and the most marked muscle weakness. Type six was specifically connected to fatigue, and type seven had the most severe symptoms including pain, swollen glands and headaches. Type four and type six were the most common forms of the condition.
I think it’s a shame that “tests” are considered more reliable indicators of illness than patients’ narratives, but I do think if these patterns are confirmed, and IF (big if here), that can be turned into a test, then maybe some patients with one of these syndromes will at last be taken seriously.
However, the fact that the researchers have identified six different types confirms a suspicion I have. Most “syndromes” are at best a mixed bag, and, at worst, a kind of dumping ground for a wide range of disorders which happen to share some common features. I don’t think we’ll ever find a “thing” or an “entity” called “chronic fatigue syndrome”. However, we might find a whole set of disorders which currently sit under the same label.
One paper I read a while back about disorders like chronic fatigue, fibromyalgia and irritable bowel syndrome demonstrated the amount of overlap which existed between these illnesses and posited the idea that underlying all these disorders is a more fundamental problem – a dysfunction of the complex adaptive system. This is the explanation I understand best – these disorders seem to be disorders of the whole organism. They aren’t disorders of bits of people, they are disorders of the way the organism functions as a whole complex system.
By coincidence, today, the Guardian published a first person account of chronic fatigue syndrome. Have a read. It’s a clearly written account and it highlights many of the common things patients say about their illness. I know some people will read that account and dismiss it in a way they would not dismiss a patient’s account of cancer. And that’s just one of the problems these patients have to face. In the hierarchy of diseases, ones without abnormal test results rank pretty low! That strikes me as neither rational, nor reasonable.
Heroes Not Zombies 
This is a really interesting post – and article. One of my students has Chronic Fatigue Syndrome, but I didn’t really know that much about it. It’s useful to have both an ‘insider’ (patient) and ‘outsider’ (medical) perspective here. Thank you.
I have M.E and was interested to read the article. I have had M.E since 1998 and also had glandular fever about 9 years prior to being diagnosed with M.E.
I wonder if anyone has looked into the link between glandular fever and M.E? So many people state that they were diagnosed with glandular fever earlier in their life and then were diagnosed with M.E.
I read the article. I’m not sure if I have CFS or not, but I’m displaying a lot of the symptoms, most notably the sleep problems.
Thanks for this post; it’s really interesting 🙂
Thankyou Autumnsong, for those kind remarks.
Butterfly, in the past it was thought that glandular fever was THE cause of ME – but we now realise that’s not the case. Many different viruses seem to be able to trigger the state. Glandular fever, or the Epstein Barr virus which causes Glandular fever, however, is notorious as one of the viruses that causes a chronic, lingering illness.
Poppy, the symptoms are pretty vague – that’s one of the problems with diagnosis – there just aren’t really clear symptoms which indicate an illness is definitely ME
I had chronic fatigue for 10 years. I went to many doctors who had no solution. Finally I hit the jackpot when I met a doctor who diagnosed me with allergies, and put me on Claritan. I objected at first, arguing that I did not have typical allergy symptoms such as a runny nose, or sneezing. I told him I had severe exhaustion, and constant flu-like symptoms. But ultimately I relented and tried the medication. Lo and behold, I was cured!
I just came across your blog clicking around WordPress looking for blogs about photography (since I have one…) and became intrigued by your writings on health issues. (Your photography is great, by the way!)
I was diagnosed with fibromyalgia almost 20 years ago, and have yet to find a doctor who has any help for me. I’m currently seeing a rheumatologist, who is trying a variety of things, none of which have helped so far. The whole reason I am seeing him is because the doctor assigned to me when I moved recently doesn’t really believe it’s a real thing; she was sure that I would get diagnosed with something else if she sent me to the rheumatologist.
I have a lot of frustration with the medical community these days, since they treat people like myself so poorly. I can appreciate that they haven’t figured the whole thing out yet, but I’m bothered by the implication I often receive that I’m either making it up, exaggerating, or just need to learn to handle stress better. The first doctor that diagnosed me told me to take aerobics classes; the exercise would help. Before the illness set in, I was swimming several times a week, doing aerobics, and taking tap dance lessons. One by one those activities had to be put aside as I became less able to function. Now the whole solution is to take an aerobics class??? If I could do aerobics I wouldn’t be sick!
Anyway, I don’t even really know why I’m writing; I guess it was just good to hear someone in the medical field that “gets” it. Someone who doesn’t blame me and just say if I tried to do more I could… Thanks for some interesting reading…
I’ve had CFS for 10 years, it’s real.
Hi again. I you don’t mind a link to my blog, this is a post I did several years ago about what’s it like to have CFS.
http://hummingbunny.wordpress.com/2006/05/31/i-have-forever-flu/
I know several other bloggers who write about CFS and my best friend has Fibro. What many people don’t understand about CFS, Fibro and other similar diseases is that the fatigue and pain never go away. Ever.
What an interesting experience Dee – I don’t think that’s at all a common experience – glad you found what worked for you. Just shows how not only are we all different but what works for different people will also be different.
Dorean, yes, it doesn’t make sense does it? To say “Exercise is what you need! That’s the answer!” when if only you were well, that’s exactly what you’d do! Thank you so much for your kind comments about the photos and my posts.
Brian, sure it’s real! Happy to publish your comment with your link
Bob
Hi Bob
I stumbled upon this post and have found it interesting reading.
I was diagnosed with CFS over 4 years ago. I have been lucky enough to have been able to attend the Glasgow Homoeopathic hospital for the past year and it’s been the main thing which has made a difference.
Without getting too controversial, when I have performed a complete U-turn in my thinking since I first became ill.
I believe the condition is 90% stress related. Nearly everyone on the WEL course I attended were or had been stressed and/or worriers. All out of the same mold.
Your mind is your main tool in fighting this condition.
Regards
Joe H
SOG knives…
Interesting ideas… I wonder how the Hollywood media would portray this?…
[…] individuals being understood and enabled to experience healthy, natural recovery. (as a side note, I think you can conceptualise such complex disorders as failures of the body’s normal healing processes. Something precipitated the ill state, and […]