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ME/CFS and Fibromyalgia Redefined as “Mental Disorders”

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Editor's Comment: In 2010, Drs. Fink and Schröder, two Danish psychiatrists, redefined several physiological illnesses as a single mental disorder: "bodily distress syndrome." Among the illnesses which Drs. Fink and Schröder reclassified are: Neurasthenia, chronic pain, Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, IBS, Syndrome X, “heart-ache," Fibromyalgia, Whiplash Associated Disorder, pain in the pelvis when pregnant, electricity-hypersensitivity, infrasound-hypersensitivity and Multiple Chemical Sensitivity (MCS). Official Danish agencies have already accepted "bodily distress syndrome" as a legitimate diagnosis. It provided the grounds for removing Karina Hansen from her home in February 2013 to a psychiatric hospital, for revoking her right to legal representation, for enforcing "evidence-based care" (exercise and cognitive behavioral therapy), and for prohibiting visits from her parents. In 2013, the fifth edition of the American Psychiatric Association's (APA) Diagnostic and Statistical Manual of Mental Disorders, (the DSM-5) also expanded the scope of "mental disorders" to include organic illnesses. Read more about changes to the DSM-5 HERE.

One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders

By P. Fink and A. Schröder


BACKGROUND: In order to clarify the classification of physical complaints not attributable to verifiable, conventionally defined diseases, a new diagnosis of bodily distress syndrome was introduced. The aim of this study was to test if patients diagnosed with one of six different functional somatic syndromes or a DSM-IV somatoform disorder characterized by physical symptoms were captured by the new diagnosis.

METHOD: A stratified sample of 978 consecutive patients from neurological (n=120) and medical (n=157) departments and from primary care (n=701) was examined applying post-hoc diagnoses based on the Schedules for Clinical Assessment in Neuropsychiatry diagnostic instrument. Diagnoses were assigned only to clinically relevant cases, i.e., patients with impairing illness.

RESULTS: Bodily distress syndrome included all patients with fibromyalgia (n=58); chronic fatigue syndrome (n=54) and hyperventilation syndrome (n=49); 98% of those with irritable bowel syndrome (n=43); and at least 90% of patients with noncardiac chest pain (n=129), pain syndrome (n=130), or any somatoform disorder (n=178). The overall agreement of bodily distress syndrome with any of these diagnostic categories was 95% (95% CI 93.1-96.0; kappa 0.86, P<.0001). Symptom profiles of bodily distress syndrome organ subtypes were similar to those of the corresponding functional somatic syndromes with diagnostic agreement ranging from 90% to 95%.

CONCLUSION: Bodily distress syndrome seem to cover most of the relevant "somatoform" or "functional" syndromes presenting with physical symptoms, not explained by well-recognized medical illness, thereby offering a common ground for the understanding of functional somatic symptoms. This may help unifying research efforts across medical disciplines and facilitate delivery of evidence-based care.

SourceJ Psychosom Res. 2010 May;68(5):415-26. doi: 10.1016/j.jpsychores.2010.02.004. P. Fink and A. Schröder. The Research Clinic for Functional Disorders and Psychosomatics, Aarhus University Hospital, 8000 Aarhus, Denmark.

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13 thoughts on “ME/CFS and Fibromyalgia Redefined as “Mental Disorders””

  1. siebertesther says:

    Current successful treatment of IBS and SIBO in the USA, based on UCLA/Cedar Sinai’s Dr. Mark Pimental’s research reported in the New England Journal of Medicine in 2011, uses a gastric system antibiotic called rifaxamin or Xifaxan to kill an overgrowth of bacteria. This bacterial overgrowth seems to result from an impaired immune system and gastric symptoms are co-morbid with about a third of patients with ME, CFS, and/or CFIDS. These bacteria in the stomach and/or small intestine send toxins to the brain causing neurological problems that effect all parts of our bodies.

    In my anecdotal experience, I was put on Xifaxan not quite two years ago for gastrointestinal symptoms diagnosed to be IBS, SIBO, and was later was discovered to have gastroparesis. Three separate times, I was given a treatment dose of 550 mg 3X a day for several weeks. Each time, I discovered in a few days that my CFS symptoms were dramatically improved and likewise, each time upon going off of Xifaxan, they came back.

    After these three episodes, I researched and found that Xifaxan is used for something else on a maintenance basis. Both my CFS doctor (an infectious disease specialist) and my gastroenterologist approved that. My insurance would only pay for 2X a day (how lucky can you get; we think they made a mistake) and so I have to from time to time supplement with an extra pill a day for a period of time if my symptoms get worse. On the 3X a day regime, I get better again.

    I also have brain damage (shrinkage and lesions) that may have been caused by my original infection with EBV that was documented by my titers at the time or by the bacterial toxins.

    Do I have body distress? You betcha! Do I have mental or emotional distress? Yes, Sir! I have been ill for 27 years and grieved the loss of my career, my inability to take care of 3 young children and my Dad with Alzheimers, suffered from an overwhelmed and frustrated husband and was bedridden and housebound for years.

    Did all of this come from some original mental disorder? Perhaps.
    Or from too much life stress? Could be… A weak constitution? Maybe.

    But then how do you explain cluster outbreaks like in Incline Village, Nevada? I visited there in the year before I got sick. Was everyone there having psychiatric problems–or was it mass hysteria like in Salem, MA?

    And also why do medical treatments like Xifaxan or rituxabin from Norway or various treatments that offer relief work? Maybe it’s just the placebo effect?

    Psychiatrists across the pond like to point to–surprise–psychiatric causes. If they came up with some treatment beyond CBT and graded exercise, I’d listen. CBT is useful to reframe our negative thinking and cope. Maybe some people are so deconditioned and can exercise without relapsing. Great for them!
    But, we’re a close knit community (especially online) and so far, no one has posted that they’ve actually recovered from ME, CFS or CFIDS through use of these methods.

    So, if you can, please help us. If you think you know what is wrong with us, please advise us as to what to do cause we have tried virtually everything in your field. And I urge you to look into the vast amount of research on our NK cells and PEM and neurally-mediated hypotension and other autonomic nervous system problems as well as gastric problems and viral and/or bacterial damage to our bodies.

    With so many young people getting sick now and facing a whole lifetime of dysfunction, we need more than a re-classification under an umbrella diagnosis. We need doctors to look at all parts of the elephant and to help us get well.

  2. alaskamarci says:

    There is nothing I can say that is actually printable here. This is beyond disturbing.

  3. nightbloomingcereus says:

    The Danish medical community’s criminal redefinition of ME/CFS and Fibromyalgia as mental illness sets back medical practice 30 years and sets back basic civil rights for actual mental health patients to the early 1900’s. It can easily be considered mass Danish (and, all too often, American) medical malpractice. The doctors who denounced Semmelweis for his recommendation for handwashing to prevent germ transfer would feel right at home.

    There are still all too many physicians who don’t understand ME/CFS and Fibromyalgia, don’t want to understand it and because their ignorance, ineptness, and incompetence keeps them from experiencing their god-like egotism, they blame the patient and the patient’s mental health status — thus offloading any responsibility for their own malpractice.

    I remember when women alcoholics were misdiagnosed and prescribed Valium. So the women became dependent on two substances that never should be mixed and then were defined as mentally ill. The ironic “joke” among people who pioneered in getting women alcoholics appropriate diagnoses and treatment was that the medical profession defined alcoholism in women a “Valium-deficit disorder”.

    With the internet, it should be possible for the American community of patients and medical professionals, as well as attorneys, to advise and assist Danish patients with ME/CFS and Fibromyalgia in regard to organizing in their own behalf. Without mass, focused effort, these patients will suffer and will be at risk for unlawful incarcerations. So much for the vaunted humaneness of the Scandanavian medical system — obviously hype.

  4. speechgal says:

    Just because the medical community has not discovered the true cause of these problems does NOT mean it is a mental disorder. That is a very lazy,catch-all answer to a complex problem. Maybe the researchers need to do a more thorough job of doing research so they can ask and answer intelligent questions, devise appropriate tests, or should keep their unscientific opinions to themselves because currently you are not qualified to give such an unsubstantiated opinion any relevance whatsoever to this topic. Your so called research is a cruel joke on those of us who suffer from these problems so until you have something valid and responsible to say on this subject, keep your ignorance to yourself. By spreading false rumors about how these diseases work, you are contributing to a major problem to how those of us who are completely debilitated are treated by the medical professionals. Because of your stupid remarks, many doctors will falsely believe your made up crap and treat us like we are completely expendable and unreliable. I don’t know how you can look at yourselves in the mirror and feel you have done anything worthwhile. Go back and do some real research or get the hell out of the research field because you don’t know what you are doing to us. Your unprofessional “research” needs to start over and do it right this time, or stop making up this crap just so you’re publishing something. Trust me, publishing a bunch of made up garbage is nothing to be proud of, and I hope you feel ashamed of yourselves because you should! Shame, shame, shame, shame, shame on all of you.

  5. williamandkandyce says:

    I think that Drs. And the pharmaceutical companies have gotten very wealthy over a disease that an antidepressant can take care of. Also it is a catch all when ppl come in to their office with all their symptoms. Rather than find a cause for it…they just shove a pill at you and call it FMS. Their are diseases out their that need to be cured. And these diseases aren’t imaginary like Fms
    Urgent studies need to be done on autoimmune disorders.
    My daughter’s mother in law has “Fibro ” and she is all depressed and never smiles and always complains. What a waiste of human flesh she is.

  6. ex-cfs says:

    I have had CFS and fibromyalgia, and I have had some mental disorders that have been related to it. And these are NOT the same. The felt experience is very, very different. I know because I had these at separate times, so the felt experience was also separated.

    I’ve had depression. That was much more psychologically involving. At no time did I feel like I physically COULD not get going with a more normal life. I just did not feel mentally capable of focusing on a more normal life.

    I’ve had PTSD, both from a natural disaster and from a long-term abusive situation. Associated with that was dissociation and anxiety/fear. Although there may be some overlap in stress system dynamics and the functioning of the autonomic nervous system, my experience was that the PTSD was revving and exhausting and I wanted to isolate myself as a result. With CFS and fibro, I very much wanted to re-engage with my life. It just was not possible. The brain fog also felt different, more like slowness, inpenetribility in CFS. In PTSD, it was more like massive distraction or a takeover of my thought process. They did not feel the same.

    While I had active CFS and fibro, I was tested every which way by acknowledged experts (recognized by traditional allopathic medicine) over an 18 month period. They found pathogens and nothing else except one low hormone, for which I received HRT. Once I started using more alternative practioners and what I call less traditional traditional practioners (MDs with an open mind, exploring new possibilities) using less common, but accepted and validated tests, I had many abnormal results that pointed to things I could do to recover. And recover I did.

    I am now able to do what I want, even exercise and play sports. I still suffer from weaknesses of the stress system and immune systems, and from hormone imbalance (including adrenal exhaustion, for which I am treated helpfully), and still have an irregular heartbeat unrelated to my psychological state. Nevertheless, I get on with my life.

    When I had CFS at its peak, I was barely able to take a shower for 5 minutes without passing out. I once sat in my doctor’s parking lot for 45 minutes waiting for a close parking space because I could not walk farther. My only activity possible for the day was sitting in a reclining chair. My kids had to play with me on the chair. Now, recovered and 11 years later, I just came back from vacation where the same kids and I hiked through multiple national and state parks. I play tennis with one twice a week. So, no, I was not looking for any kind of psychological excuse or crutch when I was sick with CFS. I was looking for any kind of answers, and luckily for me, I found them. Not everyone with this illness is so lucky, and it is totally wrong to tar them with more blame and shame.

    To say that CFS/ME and fibromyalgia is a psychological or psychiatric disorder is not only a dangerous insult, further victimizing victims, but is just plain wrong. Many studies have failed to find a clear link or overlap between CFS/ME and depression, borderline personality disorder, PTSD, past abuse, or any related psychological illness. Somatiform disorder (somatization) should just be recognized for what it is — a category of “I don’t know what they have” and “our tests can’t see what they have”. Medical science does not know everything yet, and so to tell patients that they are crazy just because scientists can not yet explain what goes wrong, is just plain wrong! How does victimizing victimized patients help them?!

    Ulcers were supposedly caused by stress, but now we know they are caused by a treatable pathogen, h. pylori. Multiple schlerosis (similar to CFS) was believed to be psychological, but now we have antibody tests for it. Etc, etc.

    Please, I thought we were past this. Look at Anthony Kolgormov’s (spelling?) work, as he basically says that there are over 4,000 medical studies showing actual physiological dysfunction with CFS, so it is no longer a debate as to whether it is really psychological. He is only a professor at Harvard! In my opinion the best and most promising neurological and neuropsychiatric research being done that may help to explain CFS if someone really wanted to seriously look at the brain effects are the polyvagal theory concerning the autonomic nervous system, the known effects of long-term stress (from any source, can be physiological stress)on various parts of the brain, and functional imaging similar to what is being done for ADHD. Just lazily saying we are crazy is not best practice in a world of medical evidence.

    And putting two stories in today’s newsletter together, I hope that the CDC’s new big research project combining many definitions related to CFS (but maybe not CFS) is not going to be the same kind of thing as this one.

    1. IanH says:

      this nonesense with decent work going on in the US and with the development of a blood spot test for FM:

      A bloodspot-based diagnostic test for fibromyalgia syndrome and related disorders

      Previous work has identified tryptophan disregulation and “broken” pathways in t-cells, mitochondria and PBMC,s

      Some work goes back as far as 2002:
      Also from Australia this excellent overview:

      A Brief Historic Overview of Clinical Disorders Associated with Tryptophan: The Relevance to Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM).
      Adele Blankfield
      International Journal of Tryptophan Research 2012:5 27–32

    2. dfwmom says:

      Fibromyalgia has been scientifically demonstrated to be a PHYSIOLOGICAL illness, not a mental disorder. If it has been ‘redefined’ as such, it is a malicious attack on these patients.

      Fibromyalgia patients show different responses on such tests as the tilt table test, and the two day stress test. Biopsies of muscle tissue show differences in tissue. Brain scans show differences in blood flow. And, recent research showed abnormalities in the arterio-venous shunts.

      While brain abnormalities are part of the syndrome, that makes it, in part, a neurological issue, but not necessarily a mental disorder. There are physiological changes THROUGHOUT the body.

      On another point, I believe the distinction between “neurological” and “mental health” are arbitrary and mis-leading. “Mental health” issues are, at the core, physiological issues relating to imbalances in the neurotransmitters or other issues with brain structure or chemistry. It’s time that we recognize these types of illnesses as simply another medical illness.

    3. MelPhleg says:

      Hey, ex-cfs :^)

      I searched online for such a person by the spelling you gave, as well as the spelling the net gave me (anthony kolmogorov).

      The only person w/such a name is someone who did work & research,, & wrote books on mathematic theories.

      I found no one with such a name working on CFS & FM issues.
      Maybe someone else can find something I missed.

    4. taml says:

      I personally have suffered from fibromyalgia for around 7 years. I have been terrified at how it has severely affected my thought process. I feel caught in a web, and I don’t know where to turn to try to get help. I feel like I say the same things over and over but get nowhere. I graduated in the top of my class, I went to college to receive an associate PTA degree, and successfully worked since I was 16 yrs. old. I can not even focus to read a book or focus to clean my house. I severely need help and feel like I am going crazy sometimes. The pain is overwhelming! It is encouraging to me to see that some are getting help and feeling better. this past year has been very difficult for me to recall events that I participated in due to just going through motions. Don’t know where to turn to next. Blah!!!

  7. Sarrabear1 says:

    My child has M.E. She does not have a mental disorder, she has a cronic immune system failure with several serious illnesses, which almost lead to her dying last year, and as a result she developed M.E. There is no way a child could make up this illness, no way on earth, she went from being a very activem very capable child, to practically bed ridden daily, she can no longer do any of the sports she did, or ride her horses. She feels like her life is no longer her own, you tell me how my daughter has made this up?

  8. beachrose says:

    This redefinition in Denmark endangers people with ME/CFS and Fibromyalgia.
    I sincerely hope this does not happen anywhere else.

  9. ericaverrillo says:

    The name of ME/CFS physician referred to in the above comment is Anthony Komaroff, not Anthony Kolmogorov.

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