Chronic Fatigue Syndrome & History of Abuse - What Do You Think?
When I saw the first headline about a new study linking childhood abuse with chronic fatigue syndrome (CFS or ME/CFS), I knew it was going to open a big ol' can of worms - especially when I saw who was involved in the research and giving a lot of quotes to the media. I'll explain why shortly.
First, let's talk about the study itself. The researchers say they found that 60% of the study participants with ME/CFS had been badly abused as children. They also say that the people with both ME/CFS and a history of abuse had lower salivary cortisol (stress hormone) levels than other people with ME/CFS. (Earlier studies have shown low cortisol is common with this condition.) They conclude that childhood abuse impairs the body's stress response, and thereby predisposes the abused to developing ME/CFS later in life.
Here's where the can of worms comes in. The ME/CFS community has fought for decades to shed the idea that their illness is psychological, in whole or in part. They've been labeled as "depressed," been referred to mental health counseling instead of getting medical treatment, been told they're psychologically "weak" because they can't deal with stress, etc. Many will view this study as a major setback - especially because it's generating headlines like crazy.
As for the researcher who's being widely quoted, he is Dr. William C. Reeves, of the CDC. He's at the very center of swirling controversy in the ME/CFS community, and it wouldn't surprise me to see his face on the dart boards of a lot of patients, advocates and researchers. Many leading members of the community say he uses a different definition of the condition, and thereby skews the results to fit a more psychological model.
While previous studies involving Reeves have shown a high abuse correllation with ME/CFS, other studies have contradicted them, including one study that even showed a lower incidence of abuse.
What's your opinion on this? Do you think this study is valid? Partially valid? Complete hogwash? Will the coverage of this give people the wrong idea about ME/CFS? Do you feel that abuse contributed to your illness? Do you want a photo of Dr. Reeves for your dart board? Weigh in on this important topic, either here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome community forum (under Newsletter & Blog Topics.)
Suggested Reading:
- A Simple Explanation of Chronic Fatigue Syndrome
- Diagnosing Chronic Fatigue Syndrome
- Chronic Fatigue vs. Chronic Fatigue Syndrome
Comments
If the study’s showed 80% of FM patients had blue eyes, would blue eyes be the cause of FM? No. I think this correlation is ludacris.
I was very violently abused as a child, and i have been diagnosed with Fibromyalgia.
I don’t personally view it (fibro) as a stress-based reaction, given that surviving that abused actually gave me some pretty strong coping mechanisms for stress: almost anything i go through, i’ve been through worse already.
Haven’t there already been links to chronic pain/fatigue issues with physically traumatic incidents, such as car accidents and such?
For that matter, anyone who thinks that depression is a simple mood disorder (something you can just decide to not feel, or “snap out of”) really needs to pull their head out of the 1990s. Or their hindquarters, whichever is most applicable.
The Reeves definition increased the prevalence rate by more than a factor of 10.
Think about it. Only 10% — at most — of the subjects are likely to actually have the real disease.
And the comparison was to another overly-broad definition. Many studies might not even have *any* subjects who have the real disease (called myalgic encephalomyelitis and recognized by the WHO as being non-psychological).
All studies based on vague and broad definitions are worthless.
The worthless definitions include all CDC definitions and all definitions associated with King’s College. And others.
There are good definitions also.
The good ones include the 2003 Canadian definition (look it up) and others. These are not based on politics as much.
This is a persecuted disease.
Make no mistake about it.
Note: There are multiple definitions out there, ranging from the most specific (myalgic encephalomyelitis) to the most broad and vague (the CDC definition of CFS.) Most research is conducted using the Fukuda definition, which some people believe is too broad. However, some researchers point out that many people who are severely disabled by CFS do not fit diagnostic criteria for ME and therefore don’t want to use the more exclusionary criteria.
I don’t see why this finding would upset people. There is no doubt that intense psychological stress can have serious and lasting physical effects (e.g. post-traumatic stress syndrome), so it wouldn’t be that surprising if it could also leads to CFS/FM. This doesn’t make these conditions any less real, and it should be helpful. Effective treatment for FM was held back for many years by the false belief that the problem was with the muscles, whereas it’s now known that the problem originates in the central nervous system, and hence could be expected to have some links with depression. Knowledge is power.
I like the concept of “allostatic load.” “Stress” can be either psychological stress, or illness, injury, physical exertion, malnutrition, toxic exposure or anything else that can stress the body. Allostatic load is the sum total of all of these, and it wouldn’t be surprising if a lot of CFS people had suffered psychological stress when they were most vulnerable, i.e., as children. But it would also make sense to search for stressors other than psychological ones in the backgrounds of people with CFS. I’ll bet if you go to Kosovo in about ten years you’ll find a very high incidence.
interesting. in the support group i started all of the people could trace cfs to toxic chemical causes.
i am well today due to only alternative medicinals, not drugs. only physical causes not emotional.
I’ve had fibro and chronic fatigue for a long long time. I’ve been told it’s purely psychological and/or purely physical. But in all this time, whether psychological or physical, none of these studies have been able to find a way to alleviate the disease for me. I don’t really care what they finally decide. I just want a solution that will help me to function successfully. And by the way, I wasn’t abused horribly as a child. And my fibromyalgia did start after two injuries, one a back injury from heavy lifting on a daily basis and one a whiplash from a car accident.
I was never abused as a child BUT I was terribly accident prone. You might say my body was abused alright. So, in that sense, ‘abuse’ could very easily have contributed to my problems in later life.
The CFIDS Association has separated itself (finally) from the CDC. The CDC has not produced the appropriate research for this disorder and have had 20+ years to do it. The first mistake was when investigating one of the first outbreaks of this disorder at Incline Village, they dismissed the suggestion that what these people might be suffering from was Myalgic Encephalomyelitis.
After that blunder, its been a nightmare for those of us who have been afflicted with ME/CFS – I’ve had it for 25 years and…. NO… I was not abused.
The CDC has abused “us.” They have worked tirelessly to find some reason to define it as a psychological disorder. And that’s why they’ve ignored the biological aspects.
We have suffered from prejudice from our government since the onset of the investigations into why so many have gotten sick.
We must speak out against this injustice.
Reeves isn’t looking for an organic cause for CFS. He’s doing studies with the Dept. of Psychiatry at Emory University. Their former director was taking money (and not disclosing it) from psychiatric drug companies. You do the math. The CDC will never do any relevant research for CFS as long as Reeves is involved. And the only reason that Reeves is involved in the first place is because he blew the whistle on those who were misappropriating funds that were supposed to be going to CFS research in the 1990s. It’s shameful that the CDC is wasting our tax money and are no closer to understanding the disease than they were in the 1980s. Thankfully private foundations are now doing the kind of research that will lead to a treatment and eventually a cure.
I think it would really help if they’d start by making sure every possible fibro/cfs patient has a lyme test and a test for gluten allergies. I’ve had neither, probably don’t need them either, but I do think there is a lot of those folks out there, and they need to narrow down the field better in order to make the studies more efficient. It sounds, to me, like they are constantly chasing their own tails.
These sorts of studies do matter in terms of the politics. Yes – there have been links drawn between abuse histroy, stress and other illnesses, but for some insidious reason these sorts of findings seem to be given more weight when it comes to CFS. It matters because it influences treatment approaches and those treatments that are geared toward the more `psychological’ aspects can do great harm to those who have genuine ME. And there seems to be more money spent fundng these sorts of psyche aspects than on the biomedical side where it is desperately needed, another area that does not seem to occur to the same degree with other illness which are accepted as physiologically based. Studies like this are so insidious precisely because people will say things like `Oh- it is true that stress is linked to illness.’ While in the community and medical professions they are used to propogate the opinion of the supposed psychological basis. This is detrimental to those with the illness in a variety of medical and social ways. This stuff is BS.
this is a good response – an Interview with Hillary Johnson, who wrote the very brilliant book Osler’s Web
… tho you might need to do a bit of cutting and pasting to get it into your browser and working
“http://blogs.psychologytoday.com/blog/emergingdiseases/200901/chronic-fatigue-”http://blogs.-psychologytoday.-com/blog/-emerging–diseases/-200901/chronic–fatigue-syndrome-child–abuse-disordered–patients–or-disordered
I believe this “report” is just so that psychiatry can attempt to stay relevant regarding CFS. I’m surprised at how much attention this is getting because it’s just a bunch of hogwash!
If it is caused by abuse in childhood, what is it that makes it pop up so late in life? I would think it would start right away. Not after you have gotten over the abuse and on with your life! I am more likely to believe conspiracy theories than that!
This study shows BIOLGICAL basis for CFS so people should stop worrying and misinterpeting this study as saying CFS is all in your head. Researchers know that people who had significant childabuse incidents that result in PTSD or dissociative disorders have a shrunken AMYGDALA gland in the brain. This gland is involved in memory storeage and fear states, as well as many other processes communicating with other glands in the brain, including the hypothalmus.
Different causes for CFS-some my be due to infections, others may be due to childhood traumas that may result in shrinkage of this
gland which completely alters brain chemistry.
We do know CFS affects more women than men by far and the more women than men have suffered long term sexual molestation in childhood. Research has proven that many victims of childhood sexual trama don’t remember the abuse, which is also an issue. Researcher interviewed adult women who were taken to hospitals for treatment for rape as children. I can’t remember the exact number cited, but a huge proportion of the adults who were raped as children reported no memory of the incident even though it is documented in hospital records.
As a therapist at a public Family Violence/Sexual Assault Center I can tell you that all of my collegues have found an unusually large portion of our adult female clients in counseling for childhood abuse issues have Chronic Fatigue Syndrome.
This doesn’t mean all people with CFS have been abused, and it doesn’t mean CFS is a pyschologically based disorder. We know childhood abuse causes permenent changes in the nervous system and brain and it is found to increase the likelihood of many other diseases.
This research should not be ridiculed as it may give some clues as to BIOLGICAL diagnositic markers and treatments for people with CFS who may have arrived at the disease by different routes.