Friday, May 20, 2011

Does CFS Have A Psychological Component?

From the Jewish Journal doctor blog:

But what I find interesting and perhaps counterproductive is the reaction of many patients. The Wall Street Journal Health Blog has been closely following this story (see the links below) and the comments from patients on their posts are quite sobering. If I had a chronic debilitating illness which has no consistently effective treatment and a study showed a modest improvement from CBT and GET, I would be knocking at the door of the nearest CBT psychologist and calling a personal trainer. And I would be pretty happy that a study finally had a positive result. Instead, patient advocacy groups and many individual patients are quite upset. They assert that CFS is caused by a virus and they reject the study findings which they think suggests that CFS is a psychological condition. This is despite the fact that the authors of the study explicitly state that “the effectiveness of behavioural treatments does not imply that the condition is psychological in nature.”
I have two reactions to this criticism from patients. The first is, why have an agenda about something under investigation? Why prefer that your disease is caused by a virus than by anything else? It either is caused by a virus or isn’t and our strongest desires can’t change the actual disease. In ten years we may find conclusive evidence that it is caused by a virus, or that it’s an auto-immune disease, or that it has genetic predispositions or that it’s a psychiatric condition. But until we know, why have a preference? This seems to me like having a strong wish about the orbit of Jupiter. I understand the patients’ desperation for an effective treatment, but the way to get there is to let the researchers seek the truth in an unbiased way, not to tell them what you expect them to find.
My second thought is, why the automatic rejection that CFS may have a psychological component? Again, if I were a patient, I would just want honest answers. If it turned out that my illness was psychological, knowing this would certainly help me focus on the right treatments more than pretending the opposite. Obviously, there is a stigma around psychiatric illness, but that stigma is wrong and should be fought against. People with bipolar disorder, for example, don’t choose their illness and can’t “snap out of it” through an act of will any more than people with pneumonia or diabetes. So I think it would be more constructive for CFS patient advocates to say something like “We don’t know what causes CFS, and whether or not it turns out to be a psychological disease, we didn’t choose it. We deserve compassion and treatment just as much as those suffering from other illnesses.” Denying that CFS could have a mental component only exacerbates the social stigma against psychiatric illness.
CFS patients deserve understanding and treatment regardless of the cause of their illness. The first step should be a willingness to investigate this mysterious condition without preconceptions.
Learn more:
New York Times article (in February): Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds
Wall Street Journal Health Blog post (in February): This Study on Chronic-Fatigue Syndrome Has Nothing to Do With XMRV
Wall Street Journal Health Blog post (this week): Study Blowback Shows Controversy Over Chronic Fatigue Syndrome
Tangential Miscellany
The Centers for Disease Control is clearly following my lead. This week it has finally alerted the public to a threat I’ve been warning readers about for years – the inevitable zombie apocalypse.

3 comments:

StephanSTN said...

Dear moral leader! ^^

Thank you for this article.
The questions are all valid. In fact, everyone who doesn't have CFS/ME should ask these questions, because it really shows interest in the subject.

The answers are pretty easy for someone who has suffered from this illness for several years or even decades.

"Does CFS have a psychological component?" Yes, of course. Every chronic and devastationg illness has psychological side-effects. This is also true for cancer and AIDS.

"...why the automatic rejection that CFS may have a psychological component."

Automatic? Perhaps. But the "automatic rejection" from my point of view comes from long years of experience. I am sure, that most CFS patients have experience with psychological treatment/ CBT. I was in clinical treatment which was CBT based and it severly damaged my health.
Because IN THEORY you could use CBT to develop coping strategies but IN REALITY CBT for CFS patients is the same as for depressive persons. They want to "activate" you and force you to do things that you know will hurt you.

Now, there are two good things that helped me to analyse my illness:

1. During the 12 years of being ill, there where phases of good and bad. In the beginning I was well for 1 month, then unwell for 1 month. Later it was 1 week good, two months bad etc. Now it's always bad with sometimes 1 day good.

2. After about seven years of being ill, I fortunately started to have depressive phases. Why do I say fortunately? Simply because I can without a problem differentiate between tiredness caused by CFS and tiredness caused by depression.

I have EXPERIENCED that my psyche has close to ZERO effect on CFS. There were days where I was so smashed by CFS. I went to bed at night and my psyche was so crushed because I knew that I had to work the next day. I was ridden by fear and I prayed to god that I would never wake up again. Well,it was the worst pychological state someone could be in. But the next day, CFS decided to start a good phase again. So from one day to the next I felt extremely better DESPITE a destroyed psyche.

And there were days, where I was full of hope because a good phase had been lasting for longer than usual and my psyche was well. But the next day I was devastated by a sudden start of a bad phase of my CFS.

These experiences have shown me that my psyche really has zero influence on my illness and I don't see why I should work on my psyche, when I really HAVE EXPERIENCED the zero effect of a good or bad state of mind.

CFS crushes you so much that it actually doesn't matter if you have depression or not.

I'd go so far as to say that a bad phase of CFS is easier to cope with if you ARE depressive at that time. Simply because you don't care about the 1000 things that you lost or can't do. And even more important you won't overstrain your body because you try to do something despite your illness.

StephanSTN said...

-part 2-

Yeah, there is now a study that shows modest improvement with CBT and GET. It's funny as on the one hand we are told that we shouldn't blindly trust the xmrv-CFS studies and on the other hand we should trust a study that shows that CBT will help us.
Well no, it's not funny, it's ridiculous. Really really ridiculous.

Yes the CFS patients are too much into the virus thingy. They should equally be into immun thingy or bacteria thingy. If there were three things to choose from:
1. Psychological studies
2. Antiviral studies
3. Several studies of physical causes

I bet every CFS patient would choose number 3. But in really number 3 doesn't exist on a large scale.

Our only hope to raise awareness that all psychological explanations are ridiculous we can only strengthen the xmrv researchers. JUST TO GET THE FOCUS AWAY FROM PSYCHOLOGICAL STUDIES, which we know DON'T HELP US, because we have experienced that the psyche has NO EFFECT on the illness CFS.

Stigma of psychological illnesses are not the problem. I have no problem to say that I had depressions or even that I was detained during clinical treatment. I'd be happy if CFS was a psychological problem because then some of the 10 different anti-depressive drugs would have helped me, Lithium would have had at least SOME positive effect on me.
Also in the early stages of my illness I totally improved my social life thanks to CBT. Really I am THANKFUL for that and I see what CBT can do for you.
But this improved social life again had ZERO effect on my CFS, so I beg science to at last get away from this psychological component and do profound research not only in retrovirus but ALL PHYSICAL CAUSES THAT COULD BE THE REASON FOR CFS.

I understand that every person that doesn't have CFS is enthusiastic about psychological treatment, but he or she wouldn't be if they had CFS themselves.

YourMoralLeader said...

Hi Stephan,

Great to hear from you.

I've been hobbled by CFS since 1988.

I've started turning things around the past three months.

Here is what has worked for me.

http://lukeford.net/blog/?p=33159