Is tolerance to psychobabble the biggest issue in medicine today?

[Sasha]

Yes, but what if that takes a century? Two? How many will die or be harmed? Do we have time to wait? Science is not automatically self correcting, it corrects because someone asks hard questions and does the research. How do we make that happen faster?

I was trying to suggest something in my post earlier but maybe that wasn't very clear. I think the scientists taking the anti-psychogenic position need to network and start a scientific movement, possibly starting with a conference.

Good idea? Bad idea? Just throwing it in there to start a discussion of practical steps.

We can talk about why people stick to the psychogenic model (and there's been acres of that kind of discussion on the forum over the years) but if we want change, we need advocacy action. This thread could be a good place to talk constructively about what to do. I'm glad you started it, Alex.

 

[cirrus]

The problem with advocacy by patients on this issue is that we're tarred with the brush of having psychosomatic conditions and that undermines our credibility.
......
It's great that there are scientists who are tackling this issue and it would be greater if more "came out" about it. .......
Question is, what can we do to help them do that? What is it, specifically, that we'd like them to do?
...........

- of course IiME are basically patients and supporters who managed to get a great conference going, but it may be better if scientists set up their own conference so that they're seen as impartial.

Not so.
This is already being done. Scientists and researchers are changing because of the IiME conferences - and more importantly the research colloquiums. You are maybe unaware of what is being performed already -

"Prior to the conference IiME organised the 4th Biomedical Research into ME Colloquium - a research meeting which brought almost 50 biomedical researchers from nine different countries to discuss, inform, cooperate and collaborate for the future benefit of all people with ME and their families.
Most of the major initiatives concerning ME research around the world were represented at the Colloquium including those in the UK concerning IiME's UK Gut Microbiota and UK Rituximab Trial studies and the LSHTM biobank project and autonomic nervous system research at Newcastle University.
The meeting was another huge success with a number of initiatives coming from the meeting.
The researchers continued to network after the meeting with several smaller groups of collaboration occurring.
"
http://www.investinme.org/IIME Newsletter August 2014.htm

These IiME Colloquiums have delegates from around the world from the major research institutions.


"Today we can announce the dates of our 2015 Biomedical Research Colloquium and international ME Conference.
The Biomedical Research into ME Colloquium 5 will take place on 28th May 2015."
- http://www.investinme.org/IIME Newsletter September 2014.htm
With almost 50 researchers from nine countries last year and working together with 12 other European countries in EMEA this is being achieved.
It is quite easy to overlook what is already in place or being created

 

[alex3619]

There are groups internationally that are now focused on this, one in the UK and one in the US at least. There are numerous individuals who are saying the same, including distinguished psychiatrists. There is change happening, but its very slow. It may take decades. I would like to see it happen faster.

I think we can do our bit by organizing something from scientists researching ME and CFS and allied diseases. Discussion is only the beginning.

At some point I think we need a reading list of good books and papers.

At some point I think we need to reach out to scientists and doctors who have already made statements and encourage them to say more, as a unified voice preferably.

 

[A.B.]

Psychobabble is so damaging because it's a diagnosis made in 3 seconds that is based on how the doctor imagines things.

That they believe this to be a useful approach says a lot about their overconfidence.

 

[Sasha]

Not so.
This is already being done. Scientists and researchers are changing because of the IiME conferences - and more importantly the research colloquiums. You are maybe unaware of what is being performed already

Hi cirrus, and welcome to the forums.

No, I'm fully aware of the IiME conferences and that they're having success in bringing biomedical researchers into our field.

However, what I'm suggesting relates not specifically to scientists involved in ME bioscience. I'm asking what we can do to strengthen the movement within psychiatry in particular and science in general against the psychogenic model as it relates to all diseases where it's being inappropriately applied, not just ME.

If the model is under mainstream, general attack then we will benefit.

 

[alex3619]

It is quite easy to overlook what is already in place or being created

Agreed.

I have only managed to attend one conference so far, in 1999. I have attended a few seminars though. I also have the DVDs from last IiME conference. I have also spent years debating the science online before I came to PR.

There is no way we can reach everyone. This is about what Thomas Hennessey called critical mass. To make change you need to reach some substantive number of people. A public crisis can also help in this. We reach doctors, scientists and patients one at a time. Psychobabble has had a century and a half of reaching out and swaying people. We cannot expect instant results. It does not mean we are powerless though.

The conferences help in no small part, on both major fronts. They help galvanize the medical research, and they help influence things politically.

This is not an easy path, but if it were easy it would have been done a long time ago.

 

[Bob]

However, what I'm suggesting relates not specifically to scientists involved in ME bioscience. I'm asking what we can do to strengthen the movement within psychiatry in particular and science in general against the psychogenic model as it relates to all diseases where it's being inappropriately applied, not just ME.

If the model is under mainstream, general attack then we will benefit.

I think it would be helpful to get people like Ben Goldacre to apply their demands to psychological research, and not just to drug-related research.

Are you aware of James Coyne and Keith Laws? They do a lot of work debunking the excessive claims of psychiatry. e.g. in relation to excessive claims about CBT for schizophrenia, but also for many other issues. But they seem to be almost two lone voices involved in an almighty battle against highly vocal establishment voices. But they do get noticed, and they are very robust in their advocacy, and they have their supporters. They are aware of some of the issues re CBT/GET for ME/CFS, but they have not stepped in to actively advocate for ME/CFS (and probably aren't likely to do so.)

 

[Sasha]

I think it would be helpful to get people like Ben Goldacre to apply their demands to psychological research, and not just to drug-related research.

Are you aware of James Coyne and Keith Laws? They do a lot of work debunking the excessive claims of psychiatry. e.g. in relation to excessive claims about CBT for schizophrenia, but also for many other issues. But they seem to be almost two lone voices involved in an almighty battle against highly vocal establishment voices. But they do get noticed, and they are very robust in their advocacy, and they have their supporters. They are aware of some of the issues re CBT/GET for ME/CFS, but they have not stepped in to actively advocate for ME/CFS (and probably aren't likely to do so.)

I've only become aware of James Coyne since Alex's posts about him. It would be great if he'd advocate for us directly but I think in the long run (and maybe the short run), that movement as a whole needs to get going. This is an issue for science and for psychology and psychiatry in general.

Question is, can we do anything to help, even if it's just to suggest things to Coyne and others or ask people like Dr Speight to approach them and encourage them to do more than they're doing? It sounds as though they have a sound basis for a strong movement.

 

[Bob]

@alex3619 - I think you mentioned James Coyne and someone else on another thread. Is there already a substantial number of scientists who have publicy come out against the pyschogenic position? Do you know who they are? Have they already formed some sort of group?

I guess it would help if I read this thread forward rather than backwards! I've just started reading it from the beginning.

 

[Sasha]

I guess it would help if I read this thread forward rather than backwards! I've just started reading it from the beginning.

Well, I don't know - that sounds quite creative!

 

[Ren]

Sorry, I haven't read all the thread. But wanted to quickly, generally ask - Who's discussing ethics and the biopsychosocial model? Has the biopsychosocial model slipped through or been ignored by university (governmental?) departments of biomedical ethics?

 

[alex3619]

The current person of interest to me in this area is Nassim Nicholas Taleb, author of The Black Swan, who has some great analyses of what is wrong with society etc. It is not clear that ME is a Black Swan phenomena, I am still thinking about that, but many of the same issues about failure in knowledge occur in relation to ME.

https://www.facebook.com/pages/Nassim-Nicholas-Taleb/13012333374

However I would warn that he thinks Prime Minister David Cameron is one of the few leaders who understands the dangers of debt.

I am thinking about blogging on this.

 

[alex3619]

I have not made an in depth investigation of BPS and ethics. On face value it looks fine, but so did Eugenics. This is an area needing investigation.

 

[daisybell]

I wonder if part of the problem is the rapid advances in medicine.. So much has been discovered that health professionals are trained to think that all diseases can be explained. So there is no such thing as a medically unexplained symptom or illness only a psychosomatic one. To shift that thinking requires a great leap in terms of training, and understanding that actually our understanding of how the body works is still very rudimentary in many ways. We have gross knowledge but very poor fine knowledge.

 

[alex3619]

@daisybell, I suspect there is a bias along these lines, but its not sufficient to explain what is happening. I also think its more correct of the general population than doctors. They are taught enough about what is not known to be aware of issues.

Doctors do irrational leaps of faith in diagnosis all the time. The diagnostic mindset is a big issue here. Most doctors are well aware the diagnoses are only tentative though. They just hate admitting it to patients. What, me, fallible? No way.

 

[barbc56]

@daisybell, I suspect there is a bias along these lines, but its not sufficient to explain what is happening. I also think its more correct of the general population than doctors. They are taught enough about what is not known to be aware of issues.

Doctors do irrational leaps of faith in diagnosis all the time. The diagnostic mindset is a big issue here. Most doctors are well aware the diagnoses are only tentative though. They just hate admitting it to patients. What, me, fallible? No way.

I think this is an over generalization.

While the diagnostic process does lend itself to this shortsideness, it doesn't pertain to all doctors. I tend to think it's also a systemic problem within the Healthcare system where doctors are overburdened by a ridiculous number of patients among other things that may be out of their control. I'm not sure my observations are true in other countries nor even others who live in the states.

Please keep in mind I'm brainstorming here. I am not sure what the solutions are. .

Barb

.

 

[alex3619]

I think this is an over generalization.

While the diagnostic process does lend itself to this shortsideness, it doesn't pertain to all doctors. I tend to think it's also a systemic problem within the Healthcare system where doctors are overburdened by a ridiculous number of patients among other things that may be out of their control. I'm not sure my observations are true in other countries nor even others who live in the states.

Please keep in mind I'm brainstorming here. I am not sure what the solutions are. .

Barb

I don't disagree its a generalization. I get along best with docs who don't fit the profile, who can admit mistakes, and are upfront with things being tentative. I get along worst with doctors who presume they are right, or at least pretend to, and yet clearly don't have a grasp on the issues.

I think overwork, and in particular a push to hurry patients through, is a huge issue. Yet even without that I think the problem would remain. Part of it is bureaucratic regulation. To that you can add insurance industry requirements. On top of that, for a doctor to do complete testing, adequate investigations, is very expensive. Who will pay for it? Not insurance, not the taxpayer. So its not the case there are no reasons for doctors to have issues around diagnosis, but rather there are many factors. I am simply describing the outcome, not all the factors.

To my knowledge the overwork issue is worst in the US, but not terrible in the UK unless you are in a hospital and on-call. US doctors often work ridiculous hours, but a big chunk of that is the ridiculous paperwork due to non-standardized insurance claims in the US.

 

[Alea Ishikawa]

. . . Dr. has a patient he doesn't know what to do with . . .

. . . motivated to change . . . if there is a negative consequence to them if the status quo continues. We need to get people to say "no" to being pushed off on the psychs for no good reason . . .

In countries with taxpayer-funded health care, people need to start complaining to their members of parliament . . .

This (per modified quote).


How did diseases move from being misunderstood/invisible to "very real and worth fighting"?

I've heard that change in society occurs not just when some people adopt the change, but when key people do. This will likely be politicians/major lobbyists, major league sports players and musicians, other celebrities. Another H. pylori-type finding, another Nobel Prize winner.

Promotion via fundraisers is usually a good thing. Cancer has survivor walks and all-night vigils on university campuses. ALS has the Ice Bucket Challenge.



I think having a "photogenic" effect/test is key. In MS we have brain lesions, ALS has paralysis.

What does the general public really know about ME/CFS except "fatigue"? Why advocate/donate to ME/CFS vs. another condition?



I think ME/CFS needs to be attacked on multiple levels. While scientists are researching, we attempt fundraising, take part in drug trials, explain the disease to family and friends, write articles and books, educate our doctors.

(Inester7 actually walked into their GP with a heart monitor that went off. GP changed attitude after that. )


Could we send the ICP Primer or the IACFS/ME Primer to psychiatrists, universities, bloggers, known Youtubers, PBS, radio, or the History channel?

(Dr. Klimas, De Meirleir, and Bell were on the ICP. The IACFS/ME primer has a foreword by a Harvard M.D.)


Does a new Primer need to be developed, the groups contacted and updated on new information? For example, I notice there is a suggestion in one primer that a Lyme diagnosis rules out ME/CFS, but a protein study may go against that.


It would also help to attack the fallacies. We could write counters to the misinformation in magazines and other news sources. We could explain bad psychiatry, good psychiatry, and the innovative practitioners who are promoting physiological evidence on ME/CFS. And link to similar tales. I remember a presentation on ME/CFS that cited Elizabeth Forsythe who was pooh-poohed for her illness, and how she eventually went on to write the book "Living with Multiple Sclerosis."


I must admit, it takes great courage to go against the grain, and I admire those who have the heart and drive to do so.

Influencing just one life can bring change, even for the next generation.

 

[Aileen]

I think that for most people, a particular cause only peaks their attention if it meets at least one of the following criteria:

1. they, or someone close to them, is diagnosed with it.
2. it is something dramatic and frightening
3. they could get it (e.g. cancer because it is so common, Ebola because highly contagious)
4. a major celebrity has it. (if Justin Beiber got ME, everyone would know what it was within 24hrs!!)

otherwise, they just ignore it. It has to touch them personally somehow.

 

[Aileen]

If we could show people how they could so easily be misdiagnosed with one of the psychobabble labels that might get their attention. Especially if we could show exactly how their lives could be impacted.

If people saw this as the threat that it is, like cancer, it would make a difference I think. They would then feel the need to protect themselves. They'd have to get involved or at least pay attention.