I normally limit my articles to one topic, but this article contains 3 short stories that otherwise wouldn’t have made it to my blog: “Spin Doctors”, “Waiting Room Observations”, and “XMRV and Aging Men”.
Spin Doctors
When I was diagnosed with CFS in 2002 the official approach in the CFS Reference Centers was psychological. While I wasn’t paying attention (too busy getting better on my own) the name got changed to psychosocial. Recently I read that there is a new name change to biopsychosocial. WTF! Fundamentally nothing changed, the disease is still considered to exist between the patient’s ears and the treatment remains the same: CBT and GET. How can they get away with this? Why aren’t there any spin doctors on our side?
Waiting Room Observations
Today I had my first test at the Himmunitas Foundation. I do not intend to discuss each and every test and (preliminary) results, I just wanted to share some observations from the waiting room. It was a typical (Belgian?) waiting room; everybody was minding their own business. The observations of this Friday morning:
- 15 patients
- 12 female and 3 male
- 8 of them were there for a breathing test (lactose or fructose)
- 9 patients were accompanied
- age: youngest person was probably between 18-20 and oldest person was 50 something
At least 9 patients were accompanied that I could see; meaning they entered the waiting room with another person person who didn’t get tested or who left some time later. Others could have been given a lift to the clinic, without the other person entering. I think this is a significantly larger percentage for accompanied adult patients than in the average waiting room of a family doctor or clinic.
XMRV and Aging Men
With the hype surrounding the possible link between XMRV and ME/CFS, most people seem to forget that it is not just about ME/CFS. XMRV could be linked to Fibromyalgia (FM), Gulf War Syndrome, atypical Multiple Sclerosis (MS) and cancer. The research into XMRV took off after the discovery of this retrovirus in the tumor tissue of a subset of prostate cancer patients. Wouldn’t the research and awareness be better served if we focused on all possible health risks of an XMRV infection instead of just ME/CFS? Raising public awareness and demanding more research on XMRV is not a battle we should fight alone.
Most people probably don’t know (much) about ME/CFS or XMRV and maybe they don’t care because they have other more pressing concerns: employment, mortgage, … and who can blame them. However the possible danger of XMRV to public health and the ways of transmission (think HIV: blood transfusion, unsafe sex, sharing injection needles, mother to unborn child) demand immediate action, meaning more research. There is no need to panic, but regardless of the outcome (false alarm or real), this should get sorted out and fast.
Are decision makers even aware of the discovery of XMRV? What do they know about ME/CFS? Are they in contact with patient organizations? Do politicians know some of their voters who have this disease? Is this on their agenda?
Even in this day and age most decision makers are still aging men and a possible link between a newly discovered retrovirus and aggressive prostate cancer should get their attention if all else fails.
| Knowing is not enough; we must apply. Willing is not enough; we must do. |
| Johann Wolfgang von Goethe |
{ 3 comments… read them below or add one }
I found the following Criticism of BPS very interesting…
“Some critics point out this question of distinction and of determination of the roles of illness and disease runs against the growing concept of the patient–doctor partnership or patient empowerment, as “biopsychosocial” becomes one more disingenuous euphemism for psychosomatic illness.[20] This may be exploited by medical insurance companies or government welfare departments eager to limit or deny access to medical and social care.[21]
Some psychiatrists see the BPS model as flawed, in either formulation or application. Epstein and colleagues describe six conflicting interpretations of what the model might be, and proposes that “…habits of mind may be the missing link between a biopsychosocial intent and clinical reality.”[22] Psychiatrist Hamid Tavakoli argues that the BPS model should be avoided because it unintentionally promotes an artificial distinction between biology and psychology, and merely causes confusion in psychiatric assessments and training programs, and that ultimately it has not helped the cause of trying to destigmatize mental health.[23]
Sociologist David Pilgrim suggests that a necessary pragmatism and a form of “mutual tolerance” (Goldie, 1977) has forced a co-existence of perspectives, rather than a genuine “theoretical integration as a shared BPS orthodoxy.”[24] Pilgrim goes on to state that despite “scientific and ethical virtues,” the BPS model “…has not been properly realised. It seems to have been pushed into the shadows by a return to medicine and the re-ascendancy of a biomedical model.”[25] However, a vocal philosophical critic of the BPS model, psychiatrist Niall McLaren[26], writes:
“Since the collapse of the 19th century models (psychoanalysis, biologism and behaviourism), psychiatrists have been in search of a model which integrates the psyche and the soma. So keen has been their search that they embraced the so-called ‘biopsychosocial model’ without ever bothering to check its details. If, at any time over the last three decades, they had done so, they would have found it had none. This would have forced them into the embarrassing position of having to acknowledge that modern psychiatry is operating in a theoretical vacuum.”[27]”
http://en.wikipedia.org/wiki/Biopsychosocial_model
When I came across the word biopsychosocial I had to look it up too. The wiki-article was my first stop. The last paragraph you mentioned says it all really.
I actually added this paragraph to wikipedia. It is right after the last paragraph (ending in “theoretical vacuum”). Remember, this is his critique of the biopsychosocial model.
The rationale for this theoretical vacuum is outlined in his 1998 paper[28] and his books Humanizing Madness and Humanizing Psychiatry. Simply put, the purpose of a scientific model is to see if a scientific theory works and to actualize its logical consequences. “In this sense, models are real and their material consequences can be measured, whereas theories are ideas and can no more be measured than daydreams. Model-building separates the theories with a future from those which will always remain dreams.” An example of a true scientific model is longer necked giraffes reach more food, survive at higher rates, and pass on this longer neck trait to their progeny. This is a model (natural selection) of the theory of evolution. Therefore, from an epistemological stance there can be no model of mental disorder without first establishing a theory of the mind. Dr. McLaren does not say that the biopsychosocial model is devoid of merit, just that it does not fit the definition of a scientific model (or theory) and does not “reveal anything that would not be known (implicitly, if not explicitly) to any practitioner of reasonable sensitivity.” He states that the biopsychosocial model should be seen in a historical context as bucking against the trend of biological reductionism which was (and still is) overtaking psychiatry. Engel “has done a very great service to orthodox psychiatry in that he legitimised the concept of talking to people as people.” In short, even though it is correct to say that sociology, psychology, and biology are factors in mental illness, simply stating this obvious fact does not make it a model in the scientific sense of the word.[29][30] [31]