How can we get the new biomedical consensus to stop the BPS treatment of patients ASAP?

[DanME]

I've only half followed this thread but something that came up at the Medx conference over the weekend just spured at thought. What if we created a way to make it easy to send thank you letters, emails, facebook likes, tweets in response to published reasearch and/or articles from scientists/researchers/journalist that support a biological basis of this illness AND send a copy of that positive feedback to a "list" of those who foster the psycho babble BS perspective (PBBS)? In addition, if we came up with a easy way to send our "disapproval" to new research that promotes the PBBS, through above means?

I guess the hard part would be identifying a group to help "vet" the research/articles and render an overall opinion on it's significance for advancing biological basis of ME and potential for treatment. Then maybe others could help to direct the response along with the creation of lists and contact information for those we want to thank and those we want to copy. .

More and more institutions have facebook and twitter accounts and administrators. I know a lot of people are not comfortable with social media based modes of communications but they are becoming the norm and are much easier than traditional more formal channels. They are "ME friendly".

The thank you letters are a wonderful idea! In my opinion, the scientist and physicians, who are on our side and publish credible and serious biomedical research need as much support from us as possible! I only worked in biomedical research for half a year, but my impression was, that it can be quite dry sometimes and is more importantly often totally decoupled from real patients and the impact it has on our lives and hopes. If a patient is cured, the doctor gets all the credit and thanks from the patient's family and not the research team, which discovered the new treatment or an important enzyme. I guess, we could really motivate the lab workers and small research teams by thank you letters and social media support.

(small example, when I once went to the German CFS conference, Prof. Scheibenbogen was asked a lot of question and got a lot of critic for not looking into the topic of mitochondria, but EBV instead. After the conference I went to her and just thanked her for her hard work and effort to help us. The looked quite surprised and smiled at me. I think, I was the first to just thank her and not to ask questions about my health)

Secondly, when I read this horrible BPS study, discussed in another thread...

Prevalence and predictors of recovery from chronic fatigue syndrome in a routine clinical practice
Discussion in 'Latest ME/CFS Research' started by Tom Kindlon, Aug 30, 2014.
(how can I create a link?)

...I discovered, that it was co written by a young psychologist from Bergen, who did an internship at King's college in London. I thought, maybe she is already so biased, she just doesn't know enough about the biomedical research out there. Maybe we could write her an email and offer her some new perspective in a non offending way?
I mean, maybe she will just think, we are all crazy and lost souls, but she is young and at the beginning of her career and I think it is worth a try.

We have a lot of people here, who have vast medical knowledge, know how to read studies and formally worked in science, psychology or medicine. We could even use this to give our letters some authority. I would clearly volunteer for the "vet" team.

 

[chipmunk1]

The problem with BPS is that it is so vague, that we can't even say what it is. In the end it's just a fancy word that is being used to sound like an authority. BPS is not a model from which something can be deducted. It's more like a vague guideline that is open to interpretation and allows for Biological, Psychological and social causes to contribute to an illness. Did we need a model for that?

Do we need a model that tells us that homelessness and thus limited access to healthy food will lead to worsening health? If yes then maybe we need a model that shows us how to empty our bowels or how to drink water.

The BPS does not prove anything it just allowed for the possibility of non-biological factors to influence physiology and co-exist with other influences.

You cannot put in data in to the BPS to predict anything or to show anything. Just referring to the BPS does not prove anything or does not give us any useful information.

When a babbler says: "According to the BPS" or "the BPS says" they are pointing to nothing just an idea that has probably existed for a very long time, nothing new. If they call it "model" they sound more professional or scientific but it has nothing to do with science in that case it's a meaningless word.

The model was theorized by psychiatristGeorge L. Engel at the University of Rochester, and putatively discussed in a 1977 article in Science,[2] where he posited "the need for a new medical model." He discusses his model in detail in his paper in the American Journal of Psychiatry [4] where he discusses the fate of a hypothetical patient, a 55 year old man who has a second heart attack six months after his first. Engel elegantly indicates that the patient's personality helps to interpret his chest pain, that he is in some degree of denial and that it is only the intervention of his employer that gives him permission to seek help. Whereas reductionistically his heart attack can be understood as a clot in a coronary artery, the wider personal perspective helps to understand that different outcomes may be possible depending on how the person responds to his condition. Subsequently, the patient in the emergency room develops a cardiac arrest as a result of an incompetent arterial puncture. Once again systems theory can analyse this event in wider terms than just a cardiac arrhythmia. It sees the event as due to inadequate training and supervision of junior staff in an emergency room. Thus while there may be "no single definitive, irreducible model has been published," [5] Engel's elegant exposition of his model in this paper gives plenty of scope for this broader understanding of clinical practice.

 

[A.B.]

Sounds like Engel had problems distinguishing fantasy from reality.

We really should oppose BPS as a whole.

 

[chipmunk1]

had problems distinguishing fantasy from reality.

Nice way of saying a person is psychotic.

 

[DanME]

Nice way of saying a person is psychotic.

That is the definition of psychotic!

 

[chipmunk1]

That is the definition of psychotic!

An informal way would be: He is totally Engel.

 

[daisybell]

What about highlighting the damage that poor BPS research is doing to the reputation of psychology and psychiatry? Would letters to the editors of respected journals, highlighting the extremely poor quality of some of the research, and the damage this does to them, perhaps be a useful tool for us??

Just trying to think laterally here....

 

[Snowdrop]

Jon Kabat-Zinn is a well known (in North America) and has a PhD in molecular biology (MIT). He does a lot of mind/body stress stuff and therefore might be a bridge between the chasm dividing physical vs somataform illness if he proved willing to listen and engage.