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Chronic fatigue syndrome research is already too mired in politics. It is disappointing to see how poorly KCL has handled both the trial itself (post-hoc protoc

Chronic fatigue syndrome research is already too mired in politics. It is disappointing to see how poorly KCL has handled both the trial itself (post-hoc protocol changes, perhaps to make conclusions more significant) and their refusal to share data so others could verify their analysis. It is also disappointing to watch how vigorously a vocal subset of CFS researchers and sufferers oppose and attack any research that touches on the possibility of psychiatric treatments possibly benefiting chronic fatigue syndrome sufferers. KCL's poor behavior in refusing to release their data is only fanning the flames here, but the vigorous objections to CFS research that suggests cognitive behavior therapy (CBT) is beneficial goes back much further than this study. For some background, chronic fatigue syndrome has several different definitions, but many patients end up with a CFS diagnosis by exclusion of other therapies. This distorts the CFS community greatly, with many CFS community members not actually meeting the criteria for CFS. The PACE trial is a good example of this, with approximately 80% of the candidates excluded for various reasons (although obviously not all 80% were excluded strictly for failing to meet CFS criteria, but it's still significant). The problem is that many CFS sufferers, all of whom are suffering from very real physical fatigue and other physical symptoms, are very resistant to any suggestion that the disease has a psychiatric component or can be modified through mental health strategies. This objection runs so deep that researchers receive death threats for participating in studies exploring CBT for CFS, and online CFS forums are filled with vitriolic hate for any suggestion that CBT or other mental health strategies could possibly be effective. Meanwhile, studies (beyond just this PACE trial) have shown CBT to be one of the most effective options we have for CFS. It's not a cure, but it does seem to help on average. My point with this whole tangent is that chronic fatigue syndrome is so caught up in politics and resistance to certain ideas that most researchers don't even want to touch the topic any more. I certainly wouldn't want to research something if advocating the current best treatment option would result in death threats from sufferers. This is all very unfortunate, because instead of progress we're left with situations like the PACE trial where both KCL and a lot of the critical researchers are refusing to play nice with each other, and instead we get nowhere. And of course, there is now even more reason for researchers to not touch CFS research.

Klinky 11y ago
The problem is the rush some doctors are in to label a patient's condition as psychosomatic, and then prescribe drugs instead of something like CBT. A psychosomatic diagnosis is often code for "I am lazy" or "I don't know". There is also the other angle that people dealing with other stressfull diseases would likely benefit from CBT too, so does showing a benefit from CBT really mean it's psychosomatic?
- CFSThrowaway 11y ago
  Your post highlights some of the disconnect between doctors, patients, and research: Psychosomatic absolutely does not mean "lazy," but that's why so many people are resistant to the idea. Psychosomatic means "of mind and body." It means physical symptoms that are caused or aggravated by mental conditions. The key phrase here is "or aggravated by," which doesn't rule out a physical cause but does suggest that addressing the psychological aspects can, at minimum, improve some of the situation. The problem is that patients get the wrong impression that their physical concerns are being dismissed and thus they reject anything to do with a psychosomatic suggestion. I'm not suggesting that CFS is purely driven by mental health, nor are the doctors or studies that show improvements from CBT. What they are suggesting is that CFS patients, for whatever unknown reasons, benefit from CBT and other mental health treatments, regardless of the underlying cause.
  - Klinky 11y ago
    I was suggesting the diagnosis of "Psychosomatic" was lazy on the doctor's part. I went into a doctor's office 10 years ago with digestive problems, and the doctor was ready to write me a prescription for anti-depressants within 15 minutes, without a single test run. Visits to gastroenterologists weeks later, and subsequent visits to counselors and psychiatrists were not helpful. I was dealing with gastroparesis, which is often not diagnosed correctly. Doctors instead suggest the patient has an eating disorder or blame it on anxiety. The truth is, there are a lot of uncaring shitty doctors out there. If you're on the fringe and don't fall into the DSM, good luck. You absolutely have to advocate for your health, because often your doctor isn't going to. At least in the U.S., most doctors aren't going to walk you through the process to get setup with CBT, and your health insurance may consider it a mental health treatment, which has additional limitations on it. If you combine being skeptical that your doctor is using mental health as a cop out, and then it's a pain in the ass to get started, you're going to be more resistant to it. It's great CBT works for some CFS patients, just like mindful meditation works for some people with chronic pain, but in no way should it be treated like a cure or a reason to stop researching it, just like we're not going to treat meditation as a cure for chronic pain.

Klinky 11y ago

The problem is the rush some doctors are in to label a patient's condition as psychosomatic, and then prescribe drugs instead of something like CBT. A psychosomatic diagnosis is often code for "I am lazy" or "I don't know". There is also the other angle that people dealing with other stressfull diseases would likely benefit from CBT too, so does showing a benefit from CBT really mean it's psychosomatic?

CFSThrowaway 11y ago
Your post highlights some of the disconnect between doctors, patients, and research: Psychosomatic absolutely does not mean "lazy," but that's why so many people are resistant to the idea. Psychosomatic means "of mind and body." It means physical symptoms that are caused or aggravated by mental conditions. The key phrase here is "or aggravated by," which doesn't rule out a physical cause but does suggest that addressing the psychological aspects can, at minimum, improve some of the situation. The problem is that patients get the wrong impression that their physical concerns are being dismissed and thus they reject anything to do with a psychosomatic suggestion. I'm not suggesting that CFS is purely driven by mental health, nor are the doctors or studies that show improvements from CBT. What they are suggesting is that CFS patients, for whatever unknown reasons, benefit from CBT and other mental health treatments, regardless of the underlying cause.
- Klinky 11y ago
  I was suggesting the diagnosis of "Psychosomatic" was lazy on the doctor's part. I went into a doctor's office 10 years ago with digestive problems, and the doctor was ready to write me a prescription for anti-depressants within 15 minutes, without a single test run. Visits to gastroenterologists weeks later, and subsequent visits to counselors and psychiatrists were not helpful. I was dealing with gastroparesis, which is often not diagnosed correctly. Doctors instead suggest the patient has an eating disorder or blame it on anxiety. The truth is, there are a lot of uncaring shitty doctors out there. If you're on the fringe and don't fall into the DSM, good luck. You absolutely have to advocate for your health, because often your doctor isn't going to. At least in the U.S., most doctors aren't going to walk you through the process to get setup with CBT, and your health insurance may consider it a mental health treatment, which has additional limitations on it. If you combine being skeptical that your doctor is using mental health as a cop out, and then it's a pain in the ass to get started, you're going to be more resistant to it. It's great CBT works for some CFS patients, just like mindful meditation works for some people with chronic pain, but in no way should it be treated like a cure or a reason to stop researching it, just like we're not going to treat meditation as a cure for chronic pain.