The study urges the need for more research on FSS, a relatively neglected research area. Especially studies on a better understanding of the etiology and treatment of these disorders are needed. The authors
The term functionally somatic syndrome does not have a great history. A 1999 Annals of Internal Medicine article stated that one of the factors perpetuating FSS’s like ME/CFS, GWS and FM is “the belief that one has a serious disease”. Times have changed, though. The 2015 study cited below is a “functional somatic syndrome” study that aimed to prove that FSS’s are, in fact, serious disorders.
Compared to the “well-defined medical diseases” the FSS’s are mysteries in the medical world.
It simply describes FSS’s such as chronic fatigue syndrome, fibromyalgia and irritable bowel syndrome as being disorders without “sufficient explanatory pathology”. That, of course, suggests that every FSS is simply a disorder whose underlying pathophysiology is currently unknown. In other words the FSS label is simply a temporary holding pen for difficult to understand (and as we’ll see, often underfunded) diseases.
That inability to define a clear, core pathophysiology has left the door open, though, for “FSS’s” to be taken less seriously. Studies suggest, though, that the health care needs and work-related absences associated with them result in high economic losses ($7-10,000/year). Early retirement is not uncommon. Some studies suggest quality of life and functionality might actually be lower in them than in other chronic illnesses.
This study asked if the lowly FSS’s might be as functionally impairing as the some of the big diseases in the well-defined medical disease (MD) category.
The Study
Functional limitations in functional somatic syndromes and well-defined medical diseases. Results from the general population cohort LifeLines Monica L. Joustra a , Karin A.M. Janssens a, Ute Bültmann b , Judith G.M. Rosmalen. Journal of Psychosomatic Research xxx (2015) xxx–xxx.
This Dutch study took advantage of a large ongoing cohort study. The study consisted of sending questionnaires to the 90,000 people in the study, (mostly healthy controls) asking about their medical history, functionality and work experiences.
The FSS’s are as functionally impairing as major medical diseases
They used the 36 question Rand 36 form to assess quality of life (QOL) and provide a physical and mental component summary. The physical health component (PHC) combine physical function (10 items), limitations due to physical problems (4 items), bodily pain (2 items) and general health (5 items) scores. The mental health component (MHC) combined vitality (4 items), social functioning (2 items), limitations due to emotional problems (3 items) and emotional well-being (5 items) scores. A work participation questionnaire assessed their ability to work.
The study then compared the responses of the healthy controls with people with one or more of three FSS disorders (irritable bowel syndrome, fibromyalgia syndrome, chronic fatigue syndrome) and people who had one of four MD’s (Crohn’s disease and ulcerative colitis, multiple sclerosis and rheumatoid arthritis).
Let’s see how the underfunded, mostly ignored, FSS’s did compared to some of the big boys in the medical world.
Results
This population-based study revealed that the functional limitations in FSS patients are common and as severe as those in patients with MD, despite the absence of underlying organic pathology. Authors
All told people with FSS’s had significantly lower total quality of life scores than people with well-defined medical disorders (MD’s). When looked at more closely, the physical components (physical functioning, limitations due to physical health, pain) were not significantly different in the two types of disorders. People with FSS’s tended to have lower mental health component (MHC) scores; that is, they had significantly lower scores in the vitality, ability to function socially, reductions in functioning due to emotional issues and emotional well-being scores than did the people with MD’s.
Unfortunately, the study did not break down which of these issues were most prominent, but the authors suggested that increased difficulty dealing with symptoms, stigmatization and lack of treatment options were probably important factors driving the lower MHC scores in the “functional somatic syndrome” group. (I’ll bet cognitive issues are probably more important in the FSS group as well.)
Similar rates of work participation and early retirement between the FSS’s and MD’s cemented how significant an impact FSS’s can have on work lives.
Conclusion
Functional limitations in FSS patients are common, and as severe as those in patients with MD when looking at QoL and work participation, emphasizing that FSS are serious health conditions. The Authors
All told, the study suggested that having an FSS such as ME/CFS, FM and IBS, is as, if not more impactful, from a functional standpoint, as having a “well-defined medical condition” such as rheumatoid arthritis, multiple sclerosis and inflammatory bowel disease.
The amount of resources the medical establishment devotes to each type of disorder is, of course, vastly different.
The study results suggest the FSS’s are not getting their fair share of the medical research pie.
The NIH spends $5 million dollars a year on ME/CFS and $105 million/year on multiple sclerosis – which was four times less prevalent in the survey. The NIH spends ten times more money on MS than fibromyalgia, yet fibromyalgia was ten times more prevalent. The NIH spends $128 million dollars a year on inflammatory bowel disease (IBD) but doesn’t even track it’s spending on IBS – which was 8 times more prevalent than IBD.
Stating that “health care professionals in public and occupational health, researchers, and society should pay more attention to these disorders”, the authors of the study agreed that the FSS’s are getting short shrift in our medical system.
These “mysterious” diseases are in something of a Catch -22, however. They’re complex diseases that don’t give up their secrets easily, and therefore might actually need more funding that well-defined medical disease. With the funding they get it’s no wonder they’re mysterious.
Studies like this, however, that underscore the seriousness of these disorders will help to build the foundation needed for the “FSS’s” to get the funding they need to break out of the FSS “ghetto”, and ultimately move into and enjoy the benefits of being well-defined medical diseases.
My psychiatrist, a sleep specialist, told me that he decided to specialize in fibromyalgia patients, because we were so much more limited than even cancer patients. He told me this a decade ago. It is certainly, in my experience, true. and I’ve been both
My psychiatrist, a sleep specialist, told me that he decided to specialize in fibromyalgia patients, because we were so much more limited than even cancer patients. He told me this a decade ago. It is certainly, in my experience, true. and I’ve been both. Of course, we need more funding, more studies, more interest in this most dehabilitating illness. I’ve suffered with it for over 30 years, my father before me, his mother, my son and my dtr. No break for any of us. Lyrica and Xyrem enables me to lead a little life. Walking about a block, there and back, is all I can manage to do….life is not getting any easier.
If I can offer any hope……
http://www.cortjohnson.org/blog/2015/05/20/adrenal-brain-exhaustion-dardens-fibromyalgia-chronic-fatigue-syndrome-story/#comment-648229
I owe pretty much everything I have learned about getting my life back, to Cort Johnson and this blog – every part of the protocol I have adopted is based on something he has posted, or recommended because it works for him.
Problem is, it is not yet about taking a drug that “cures” you – it is about serious amounts of time, some money, and a lot of self-discipline. However, it is worth it – I would rather be sacrificing what I am to get the benefit in “all the rest of my day to day life”.
Glad to hear you are doing so much better..I wish I was as disciplined as you Phil 🙂
I also struggle big time with self discipline. I have ADHD & OCD, which are both very distracting. But I was & still am an A type personality. Now w/ fibromyalgia /CFS I often push myself beyond my limits & then pay for it & get way behind again. I did a major downsizing of my life, but it involved a move & some emotionally traumatic issues. Here, a year later, I’m still crashed, meaning in bed most of the time getting further & further behind on chores, housework, bookkeeping–all that stuff. And gaining weight again. I try to keep my sense of humor & I have very strong faith, but it’s a hourly struggle. I’m very grateful for this blog! And my national church support group helps me keep a proper perspective & focus on others. As sick as I am, there are many in my support group who have the same condition I have and many whose health is on the knife edge of life & death. I know fibromyalgia /CFS can make a person want to die! But I don’t joke about terminal illness with so many friends who are multiple cancer survivors & still going through so many horrible side effects as well as other life-threatening illnesses. In fact one of them gave me the link to this blog! Very grateful for both groups.
This is the time for a major spiritual effort is it not? How to be Sick by Toni Bernhard has some great suggestions for keeping it all in perspective. Good luck on finding as clean a way as possible through this.
Sorry off subject.
http://neurosciencenews.com/lymphatic-system-brain-neurobiology-2080/
Researchers Find Missing Link Between the Brain and Immune System
Neuroscience News
June 1, 2015
Featured, Neuroscience
Implications profound for neurological diseases from autism to Alzheimer’s to multiple sclerosis.
In a stunning discovery that overturns decades of textbook teaching, researchers at the University of Virginia School of Medicine have determined that the brain is directly connected to the immune system by vessels previously thought not to exist. That such vessels could have escaped detection when the lymphatic system has been so thoroughly mapped throughout the body is surprising on its own, but the true significance of the discovery lies in the effects it could have on the study and treatment of neurological diseases ranging from autism to Alzheimer’s disease to multiple sclerosis.
“Instead of asking, ‘How do we study the immune response of the brain?’ ‘Why do multiple sclerosis patients have the immune attacks?’
This may help,
Tim
Thanks Tim 🙂
Its amazing what science can do when it stops concluding it has all the answers. This new understanding can change everything!
What a great way to put it RMW!
Its amazing what science can do when it stops concluding it has all the answers.
That FSS category really offends me. The official way for doctors to ignore patients, or worse give harmful and useless drugs as treatment or placebo, however a useless doctor views actions taken by him. Over thirty years ago, allergies returned to my life, with a vengeance, that is not just allergic rhinitis but also asthma, including allergen-induced and exercise-induced, where exercise has the meaning of move any muscle. I was so worried with both 1) the loss in function (my however-long-I-want-to-ride bicycle trips reduced to 5 minutes, get off the bike and rest) and 2) why it happened to me. Because this was allergy and I had a really competent, sensible allergist, he told me to quit worrying about why, we had a bit of an argument. He said, asthma can be fatal, it is serious, you have it, let us get on with treating it. He used medications, desensitization shots, and after I passed the worst few years of reactions, he sent me to weight training to sneak around the limits imposed by exercise induced asthma. I became a new person from that treatment. I still had asthma but not the limits to my function. I would joke that my growing young nephews, who I loved to pick up, were getting lighter. Of course, the fact was I was getting stronger.
I am told that before I encountered my competent allergists, many believed allergic reactions to be all in the head. How much longer until we have the competence on this disease?
My standards were too high for doctors, when M.E. hit me with a case of bronchitis. But the allergists were my best supporters at the start, getting me referrals, and adding to the list of things to test in me. They knew me well and kept on thinking what could be happening to me. I still expected doctors to be like my allergists when this disease hit me. One doctor was good enough to diagnose and to insist I tell him the only three things I would do — all else fell out of my life, and then with Dr Cheney I got actual treatment for symptoms, and the directive that I was making myself sicker by continuing to work, even with all the sick days I was taking. That was hard, so I argued with him too. He held his ground, he was right.
Since then, no real help, that is, all this century. Maybe it is good that doctor make their bias so very clear, their desire not to help, get out of my office. But it is bad that so very many doctors fall in that category, and more all the time, in the US at least. Research breakthroughs are always interesting, but so few doctors put them to use clinically.
My friends from work are retiring, or considering it now. I never got to consider that — of course when I argued with Dr Cheney long ago, I held a hope that I would get better, so I was, in the parlance of my employer, in the sick book. That hope is gone, life goes on, doctors are less useful.
Sarah L
Cort wrote: “A 1999 Annals of Internal Medicine article stated that one of the factors perpetuating FSS’s like ME/CFS, GWS and FM is ‘the belief that one has a serious disease.”
I recently happened upon this doozy from 1987: “Post-infectious fatigue or post-infectious
neuromyasthenia (PIN) is an illness characterized by persisting fatigue and disability after apparent acute infections…
There is no effective therapy. PIN is probably caused by an acute infection occurring in patients who are psychologically susceptible. They require emotional support, reassurance and explanation… Yuppie Plague…”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2218522/
(Can Farm Physician v33 1987 May)
“This population-based study revealed that the functional limitations in FSS patients are common and as severe as those in patients with MD, despite the absence of underlying organic pathology. Authors”
I do wish the authors could insert the words, “any as yet detected” between the words “of” and “underlying” in the above quote. To flatly state that there is no underlying organic pathology is to make a claim they could not possibly prove. It also continues the stigma of our suffering being all in our heads.
You’re right Sarah – it’s ridiculous. Why all the nervous system problems don’t count as “organic pathology” I don’t know. Plus there’s now the small fiber findings. Good point 🙂
In 1965 I had massive hemorrhaging that resulted in my blood supply being replaced twice. I had surgery to find the source of the bleeding and to stop it. The dx was Crohn’s disease. I asked to read about it and my doctor brought me a medical text with one page. It said my disease had a psychiatric basis that involved a dependent mother. A surgeon told me I’d have many surgeries and be dead by forty. The disease had nine names. It was not considered an autoimmune disease; that came much later. There was almost no research.
I was very ill for three years and no one knows why I went into remission. In the next ten years the personality profile changed many times. I went from having the wrong mother to not being able to handle grief to being a Type A. Research and treatment didn’t advance.
Some desperate patients working with their doctors formed what’s now the Crohn’s & Colitis Foundation. Their initial work was getting rid of the stigma attached to the disease. Eventually they funded their own research grants. It took a long time and meanwhile people were dying.
Eleven years after my Crohn’s dx I got interstitial cystitis. The first of diseases that eventually led me into the horrible world of CFS.
There is a known high incidence of interstitial cystitis and Crohn’s disease. And people with Crohn’s get fibro. I was dx with fibro so long ago it was called fibrositis. It accompanies many autoimmune diseases.
I am stricken by the lack of funding for CFS but actually encouraged by funding for Crohn’s and MS. Any research that unlocks the secrets of why the immune system reacts in certain ways can only help us.