• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Simon Wessely wins prize for "Standing Up For Science."

Messages
9
Alex said:

"Psychogenic medicine reinvents itself all the time."

It may be beginning to get some pushback within the field of psychology. I found this article, on iatrogenic suicide following dagnoses of psychogenic pain:

http://dxsummit.org/archives/1002

The author is a patient advocate, not a medical professional, but the article is on a site run under the auspices of the Society for Humanistic Psychology, which is trying to rethink the DSM and ICD classifications of mental illness.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
So by all means use suspicions about motivations to drive advocacy, but its the actual things we can demonstrate that will bring them down. Facts and reason. That and the science advancing to show their models and hypotheses are nonsense, which is actually happening right now.

Now this is different if we have a powerful political process in play. Yet even then ascribing motivations can backfire.

Now I don't doubt some are, if not actively engaged in bad research practices, at least aware they might be. Yet the human tendency is to explain this away. Their careers are on the line. Our lives are on the line. This is not a fight we can back away from. There is no way they can suppress advocacy forever, even using highly dubious tactics. Eventually facts and reason will make a difference, but it is the science and politics that operate in more reasonable time frames.

I am in favour, however, of asking why a lot about their actions, claims and methods, and doing so publicly. Don't make the mistake of ascribing bad behaviour, demonstrate a problem and keep asking why, why, why?

PS The entire field of psychiatry has some very dubious practices, practices that are enshrined in tradition. If it worked for them in the past, no matter if its valid, then they will continue to do this. Its unethical, and probably immoral, but its not easy to demonstrate this. It is easy to show its irrational.

That's something Ive thought quite a lot about of late with my own advocacy efforts. Its no good really saying this or that unless we can prove our point. Saying stuff we cant easily prove even if it is correct can and I think among the ME community often has, backfired.. leading others to think we are conspiratory theorists, over the top, paranoid or whatever.

Im too the point now that with any advovcacy, Im trying to lay of any judgements which I cant base on easy to demonstrate facts. If one does this, one has written something which isnt at all disputable so it makes it impossible for those who want to bury ME or the issues we have to knock.

The moment someone brings something into any advocacy which can be knocked, it causes the rest of whatever one has written to full under dispute too due to the other then placing judgement on the writer... and unfortunately most people wont take time to check if they get doubts.. instead they'll then just ignore the whole thing.

The only way we will win our ME advocacy battles is being clear, to the point and non disputable and not say anything which makes us look like loonies to those who dont know us better.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
My stuff in bold

Did you know that the field of Psychiatry labelled diabetes, lupus and MS psychyogenic? The field requires no hard proof at all for these theories and often argues with the scientific field of Neuerology? It's little more the dogma pretending to be science.

and I think that is an important thing to bring up and say to anyone who tries to say ME/CFS is psychiartic .. keep pointing out the facts.. that psycholology field cant be trusted as it has made big mistakes before and that we know that is what is happening now. Keep using facts to help open peoples views.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
@taniaaust1 , unfortunately some promoting psychogenic views don't seem to care about facts, and knock everything from a position of authority, often without a shred of evidence.

I have said this a few times now, the batting average of psychogenic medicine, where anything is proven to be real, to being proven to be wrong, is zero to many.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
That's something Ive thought quite a lot about of late with my own advocacy efforts. Its no good really saying this or that unless we can prove our point. Saying stuff we cant easily prove even if it is correct can and I think among the ME community often has, backfired.. leading others to think we are conspiratory theorists, over the top, paranoid or whatever.

You're not paranoid if they are really out to get you ;-)
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
@taniaaust1 , unfortunately some promoting psychogenic views don't seem to care about facts, and knock everything from a position of authority, often without a shred of evidence.

I have said this a few times now, the batting average of psychogenic medicine, where anything is proven to be real, to being proven to be wrong, is zero to many.

That is why the target you are battling needs to be carefully picked eg it would be no good to try to battle with someone like Wessely .. instead fight the misconception on the other battle grounds. (its why when Im targeting advocacy wise the IOM thing.. Im not going to focus at all on targeting the ones doing the IOM nor the HSS (not sure if i have the letters right) but target others over it elsewhere eg go higher up or lower down and get more public support over the wrongness of it).

Its chews too much energy fighting things at the level where the inground views are.. so fight the things at other levels.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
You're not paranoid if they are really out to get you ;-)

:) yeah true.. but no one is going to listen to you if they think you have that in thier eyes a false belief. So you need to sound as rational as possible. This may even mean having to play down situations so to gain more traction in being listened to and believed

eg for example. Ive had horrible ME/CFS abuse. A dr used me to get to the guy I was seeing.. had me leave my own home and move in with her under the guise of wanting to help my ME/CFS.. she then ended up sleeping with him!!! When I then confronted her about their having unprotected sex (my boyfriend told me).. she goes "I'll do as I fuckin like" (needless to say I was shattered by this and became suicidal over the betrayal of a dr who was supposed to be helping me and by my boyfriend..

what is even worst is it was agonising to be wanting to offically report her while at the same time not wanting to do as she was the only doctor who had diagnosed a couple of things lots of other doctors had missed and then enabled me to see the right specialists so I also felt like I owed her. Due to this I never offically reported her (I'd wouldnt be able to prove it anyway other then I had moved in and was living with her).

Ive learnt I cant share this too much even when telling my whole ME/CFS story and all the wrongs which have been done to me, as many people when they here that just then think Im crazy. Im in a situation where I have to play down my story and miss so much of it out, to be believed. Anyway.. sometimes we have to pick what is wise to be saying when we are doing advocacy for the best success and often leaving so much out.
 
Last edited:

Leopardtail

Senior Member
Messages
1,151
Location
England
Alex said:

"Psychogenic medicine reinvents itself all the time."

It may be beginning to get some pushback within the field of psychology. I found this article, on iatrogenic suicide following dagnoses of psychogenic pain:

http://dxsummit.org/archives/1002

The author is a patient advocate, not a medical professional, but the article is on a site run under the auspices of the Society for Humanistic Psychology, which is trying to rethink the DSM and ICD classifications of mental illness.

The problem (here in Britain) at least is that reputable competent psychiatrists consider it to be career suicide to voice their opinion that these 'Somatoform' theories are bunkum. The disreputable 'Authorities on ME' use the same bullying tactics with those in their own field that they do with bio-med researchers who disagree with them. Try looking at some of the letter pages in the Lancet, or the Psych journals here.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
:) yeah true.. but no one is going to listen to you if they think you have that in thier eyes a false belief. So you need to sound as rational as possible. This may even mean having to play down situations so to gain more traction in being listened to and believed

eg for example. Ive had horrible ME/CFS abuse. A dr used me to get to the guy I was seeing.. had me move in with her under the guise of wanting to help my ME/CFS.. she then ended up sleepingwith him!!! Ive learnt I cant share this too much even when telling my whole ME/CFS story and all the wrongs which have been done to me, as many people when they here that just then think Im crazy. Im in a situation where I have to play down my story and miss so much of it out, to be believed.

That's all too familiar Alex. My CFS affects the way my Insulin works (I also have diabetes) such that after three days of severe fatigue it stops working properly. It is causing absolute havoc (I even have detailed records to prove it). Yet due to lies told by a CBT/GET hospital word I was one I am treat as being too mentally incapable to add up (I have an IQ of 176 when my brain works).

I have come to the conclusion that it is better to have both friends and a partner that also suffer it. The few people with CFS I know in happy relationships both have it - it seems the only way to be understood by one's partner. Here's hoping (with fingers crossed).
 

Leopardtail

Senior Member
Messages
1,151
Location
England
That is why the target you are battling needs to be carefully picked eg it would be no good to try to battle with someone like Wessely .. instead fight the misconception on the other battle grounds. (its why when Im targeting advocacy wise the IOM thing.. Im not going to focus at all on targeting the ones doing the IOM nor the HSS (not sure if i have the letters right) but target others over it elsewhere eg go higher up or lower down and get more public support over the wrongness of it).

Its chews too much energy fighting things at the level where the inground views are.. so fight the things at other levels.
I came to the same conclusion Tania, I am looking to do research in a area that has not been touched before thus giving me a whole different sets of scientists and medics to educate, thereby bypassing all that rubbish. Most obviously specialists in fields where the Psychotics have already been and been proven wrong, are better places for us to start.