Cognitive behavioral therapy (CBT) is frequently recommended for people with chronic fatigue syndrome (CFS or ME/CFS), but it's quite controversial. Some patients, advocates and researchers say that CBT is not only ineffective, it can be harmful. Meanwhile, some practitioners and several major health organizations (the CDC, the UK's NICE) consider CBT the front-line therapy for the condition. Among people with ME/CFS, you can find plenty who believe they've been helped or harmed by CBT, and others who say it did nothing either way. Now, a new study could help separate those who could be helped by CBT from those who aren't likely to.
What is Cognitive Behavioral Therapy?
CBT is a type of psychotherapy that looks at your thought processes and behaviors, then teaches you processes and behaviors that are more beneficial to you. It can be helpful with things like developing better sleep habits or developing better coping skills. People will an array of chronic, physiological conditions have benefitted from it. The point of contention with CBT for ME/CFS is that it's too often the primary treatment (in lieu of medications), and some therapists apparently think that a change in thoughts and behaviors can alleviate the major symptoms of the illness.
Low Cortisol & CBT
The study I mentioned looked at measured cortisol levels in participants before and after a course of CBT. Researchers say 39% of participants had success with CBT, but those who fared poorest were the ones with the lowest cortisol levels. They say hypocortisolism could be used to predict those who are likely to have a poor outcome with CBT.
The Study's Significance
To me, this study has more significance than just determining who is or isn't a good candidate for CBT. It comes from London, which many consider the heart of what's called a "biopsychosocial" theory of ME/CFS -- bascially, saying psychology and social factors figure heavily into it. These researchers acknowledged low cortisol as having "clinical relevance" and concluded that it "could be one of several maintaining factors that interact in the persistence of CFS."
That's a long way from abandoning their controversial viewpoint, but it does seem like a significant step. Also, they used Fukuda inclusion criteria and not the Reeves empirical definition. In this arena, we may have a long way to go, but at least it's a start.
What do you think? Is this study encouraging, or too little too late? Have you had CBT? What was your experience? Leave your comments below!
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- A Simple Explanation of Chronic Fatigue Syndrome
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Do you have a link to this study? It’s interesting. I think everyone in the world can benefit from psychological therapy. It’s made a huge difference in my life, though the CBT type isn’t really for me. I agree though, it shouldn’t be the major treatment for ME/CFS. ME/CFS is a biological disease, so treating it through psychological means is indirect and ineffective. It may help with coping, and that is great, but it does nothing to cure.
My gut reaction is this is insulting to people suffering from ME/CFS (which I might or might not be one of since I don’t have a diagnosis yet). It implies that CFS is “all in your head” and learning to act differently will “cure” you.
I do think therapy is a Good Thing for people with chronic illnesses. There’s a lot to deal with, and a good therapist will help a person learn to live with their chronic health problems and teach strategies for coping with it. Sure, I could use help in developing better sleep habits and coping strategies. But that’s not going to make me suddenly all better.
A load of bollocks. We’re sick, not crazy.
I had CBT years ago, before I was diagnosed with FMS/CFS. It was directed mainly at helping me deal with my depression and PTSD, and for that it was a life saver. It really helped me recognize and work with some of my triggers, so that I don’t trigger as often, and when I do can more easily pull myself back from the panic attacks.
I do see where what I learned in CBT has helped me deal with my CFS, primarily in not overdoing it. We all have these voices in our head that tells us we should do what people expect us to do, even if we know we’re not up to it. We listen to the voices, let guilt eat at us, and do those things that we know will have us in bed for days after. What I learned in CBT really helped me to take a realistic look at the picture and say no when I know I can’t do something. So, in that way, I can see CBT being helpful for chronic fatigue. Curing it, though? No. Can’t see it curing the illness, just helping us deal with it.
An interesting perspective on CFS. I can see how CBT can be a useful adjunct to traditional treatment plans. One view of CFS is that it’s a conglomeration of multiple diseases that have similar clinical features. Others are looking for that one gene, infection or biochemical imbalance that is the common pathway towards CFS.
Here’s one more alternate perspective: All modern humans by definition are susceptible to breathing problems at while sleeping due to our unique upper airway anatomy. Because of our ability to have complex speech and language, our upper airway is unprotected. Due to the location of our voice box below the tongue (rather than behind the tongue), the tongue can fall back easily into the oropharynx.
Dr. Weston Price, in his classic book, Nutrition and Physical Degeneration, showed that modern human’s jaws are much more narrow with dental crowding. This is thought to be due to a major change in our diets to processed foods and malnutrition. There’s also a pretty convincing theory that bottle-feeding (another modern, Western invention) can also cause malocclusion and dental crowding.
By definition, this constricts the upper airway even more. In everyone, the tongue falls back to some degree due to gravity, but when the jaw is smaller, it takes up relatively more space and the tongue can obstruct breathing when in deeper levels of sleep due to muscle relaxation. This can cause various degrees micro-obstruction and arousals, preventing you from staying in deep sleep. These obstructions are not long enough to be classified as an apnea, since you need to stop breathing for more than 10 seconds for this definition. In theory, you can stop breathing 20 times every hour and still have an apnea-hypopnea index of 0.
Ultimately, these multiple obstructions and arousals causes a physiologic stress response that can lead to a relative sympathetic hyperactivity, with resulting lowering of one’s thyroid and reproductive hormone function, increased cortisol, weight gain, lowering of your pain thresholds, and microscopic stokes and clotting anywhere in the body (even in the brain), amongst many others.
These researchers are notorious for including people with anxiety disorders, depression, PTSD etc. in their studies. Indeed, they apparently believe CFS to be just another variant of the above. They are also extremely criticized for omitting any reference to any of the multitudinous studies which show oftentimes severe biological abnormalities in CFS patients, from decreased blood flow to the brain following exercise, increased brain lactate, etc.
I personally believe that in these CBT studies, the people who respond are people with depression/anxiety disorders/PTSD and who have been misdiagnosed with CFS, and the people who don’t respond are actually legitimate CFS cases. After all, one thing these ‘researchers’ often report is that ‘illness beliefs’, ie the belief that one is actually physically ill as opposed to having some sort of psychological disturbance is another of the ‘predictive factors’ in regards to response to CBT/GET. Yet these researchers then seek to alter the person’s beliefs as a result of this as opposed to listening to the criticisms levied against them and considering that people might actually be sick!
perpetualspiral,
The study is linked in the first paragraph, where it says “new study.”
John,
What you say is true, which is why I’m somewhat encouraged by this study — these are the folks who believe ME/CFS is psychological, and yet they surprised themselves by finding a physiological difference that predicted who would or wouldn’t benefit from CBT. Granted, we’d all be a lot better off if these guys would take an honest look at the physiological research that’s been done, but at least they’ve taken a small step in the right direction.
I am one of those in the UK who went through CBT as the claimed benefit was overwhelming, and even had Hydrocortisone based upon the erroneous conclusion that I had low cortisol levels. The result? One massive set back, as I felt so dreadfully ill. Subsequently, I was found to have my M.E. caused by a chronic bio film protected Streptococcal bacterial infection, and for chronic infection the worst thing that can be given is Hydrocortisone, and the graded exercise component of the Cognitive Behaviour Therapy. The location was, as per the article, London, in the UK. Never again will I use the National Health Service in the UK.
Honestly, I don’t think they are really admitting anything. Cortisol levels can be linked to stress, as they are part of the fight or flight system. If they say that they are seeing patients with low levels of cortisol, they can very easily use that to back up their whole psychological theory of CFS. (They would be wrong, but that hasn’t stopped them thus far.)
And using the definition that they did is only marginally better than using Reeves. They need to use the Canadian definition if they want to actually study people with ME/CFS and ONLY ME/CFS. The other definitions still wind up including all sorts of psychologically based reasons for chronic fatigue, which as we know, is NOT ME/CFS.
As to using CBT, I do believe that it can be a very beneficial tool for coping with having ME/CFS, just as it can be used for coping with having other chronic illnesses. It can also be helpful in teaching people to learn to recognize their energy envelope and to work within it. However, no one is going to cure a biophysical illness with a psychological treatment. Mind/body connections are real, but you cannot cure the body by treating the mind.
Well, maybe I’m nuts now, but prior to getting sick with what started out with a high fever illness 3 and 1/2 years ago, I was never depressed,never suffered from anxiety, and I could handle any stressful situation that came at me. Now I can’t handle stress, occasionally get slightly depressed about the loss of my old life, and I suffer from anxiety sometimes. I tried CBT for a month or two, but I have a Human Service degree, with a lots of Psychology classes. Every thing my therapist told me to do, I was already familiar with, because of my college degree background. CBT didn’t seem to help or hurt. I think the only thing it hurt for me, was dragging myself to therapist visits when I felt to sick to go, but would go anyhow. I have realized over the last few years that if I am stressed out for whatever reason, physical or mental, I am likely to feel sicker. One feature of my illness over the last 3 and 1/2 years is I run a low grade temp when I’m feeling lousy. I really don’t believe that my psychological status can cause these fevers. Also for the last 3 and 1/2 years, most of the time, my white blood cell count has been low. Again, I don’t think my psychy can be responsible for that either. I think if I had lupus, or many other illness’s, if I got stressed out, physically or mentally, I would also be in a flare with lupus, or whatever other illness I might have. We all have a physical illness which is aggravated by stress. So it’s good to learn how to cope with this illness, but not sure actual CBT is the answer. Also, not all therapist’s are created equal, so not everyone is being therapied the same way. I have been sick long enough to realize and accept my limitations. I have stopped trying to hide this illness from my family and friends, and I am making them understand that I can’t do what I used to do. This has been the best therapy for me.
Cognitive Behavioral Therapy is a useful tool used to help people from all walks of life cope with stress! The fact that it is being studied as “a treatment” for ME/CFS/FMS is a waste of time and funds. This time and money should be devoted to researching a physiological cause and a medical treatment for a group of syndromes responsible for so much devastation in people’s lives. The basis for CBT is nothing more than behaviour modification! Calming one’s mind is beneficial to us and is achievable by using Cognitive Behavioral Therapy. However, it can also be attained through various other methods, such as meditation, music, medication, hot tubs, massage etc. We do not consider these treatments as front-line therapies for the condition, nor do we think that these tools will alleviate the major symptoms of the illness. Doing so would relegate all of us to the psychiatric community and social services groups of the world for treatment. Our debilitating chronic illnesses necessitate the use of any tool that helps in quieting the mind, body and spirit to assist in easing some of the symptoms we suffer from, but to acknowledge this as a treatment is denying the truth about a group of very serious physical disorders the medical community has of yet been able to figure out. Their “biopsychosocial” theory of ME/CFS is a step back for all of us suffering from an illness that most often strikes the healthiest, in the prime of their lives, then physiologically drains them of energy and changes their entire neurological responses to pain. Insinuating that psychology and social factors are the cause and/or potential cure for ME/CFS/FMS with or without the a normal level of cortisol is equivalent to telling a patient suffering from terminal Cancer that his or her symptoms will improve with psychotherapy!
Thanks for the link…did I miss that originally or did you add it later? Probably had something to do with my insane *brainfog* LOL