IOM's response to patients' concerns about panel selection

[beaker]

Obviously not everyone can do the test as usual, especially not the most severe. However some might be able to use a supine bike or hand crank. The real issue is whether or not it is wise to do so. On the other hand I suspect the most severe will need only one test - day one will show disability.

I did those tests as a part of a study 20 + years ago ( don't know why if they were using them as a marker then it has taken so dang long to make something official out of it ) . I was too ill at the time to do more then get hooked up and take 2 steps. That was day 1. Day 2 they didn't even make me do.
Another person who was sicker than I, sat on a chair on the treadmill (turned off of course) hooked up to the machine. no day 2 for them either. I think on the end of the study they couldn't do even that.
We had to have some kind of reading to at least be included in the study.
There are those sicker who wouldn't have been able to do that.
I know there certainly were times when I couldn't of done any hand crank that you suggest. {Thankfully now I could do a few} And there are those who are worse then I was then. It's not a matter of is it good for the seriously ill. They just plain can't.
I don't know how you get around that.
In my case, hooked up to the apparatus, I was in anaerobic at rest. There was no threshold. I was already past it as my norm. Maybe that would be a determinate in place of any testing.
But then, hooking up the machines would be impossible for some. Too much movement , too much stimulation for even that.

 

[leela]

There is no objective evidence of psychogenic disorder so it must be physical.

Isn't it so highly bizarre that this has not been more soundly iterated in medical science? You'd think they'd've been laughed out of the schoolyard for their completely illogical, unprovable stance.

It is interesting how totally obvious truths remain hidden--until they don't. Interesting how many people have swallowed the psychosomatic "argument" wholesale. It is mindboggling to me that I had not thought with the clarity of the above sentence
until Alex distilled it so well. Now it seems so completely obvious.

I feel like this whole sh8tshow is helping to do the Big Reveal on psychiatry and how its time has come and gone.
This could end up being really good for people everywhere, if clear thinking like the above becomes more prominent.

I think we may be honing in on our game-changing soundbites here. We ought to be acting like Fox News and relentlessly repeating phrases like this in every conversation with these people. Just hammering it home, again and again. And again.

 

[alex3619]

I think we may be honing in on our game-changing soundbites here. We ought to be acting like Fox News and relentlessly repeating phrases like this in every conversation with these people. Just hammering it home, again and again. And again.

Like in my signature? We do need to bring this home to them. Its a question of how. I have been working on this for years, I don't intend to stop soon.

 

[aimossy]

my favourite word at the moment is 'psychobabble' it is a very good word.
im using it a lot.....the two logical ones in my house giggle every time I say "blah blah psychobabble" to the other one in the house that likes psychobabble and to get into these discussions seems to shut it down quite effectively lol!
cheers @alex3619.tehe! its my new useful communication tool.

 

[leela]

Like in my signature? We do need to bring this home to them. Its a question of how. I have been working on this for years, I don't intend to stop soon.

Yes! Like in your signature, which I love!
However, your further distillation just makes it that much more concise--in the sense of short, sweet, and really speaking their language.

I think the time has come to just hold the mirror up to that whole sideshow, and have it actually be seen for what it is.
Down with the "tower of babble"!

 

[alex3619]

Yes, I had a blog about that: http://forums.phoenixrising.me/index.php?entries/the-fall-of-the-tower-of-babble.824/

People have been trying to put a stop to this stuff for at least 91 years! I was writing my book to, amongst other things, document their prolific list of fallacies. It isn't quite true to say Psychiatry (is) The Science of Lies (Szatz) but it certainly seems to be a Cult of Fallacy.

PS Holding the mirror up as you put it is basically a simple philosophy trick. It reveal fallacious things, and other kinds of BS.

 

[Snowdrop]

When a misplaced idea like psychiatric psychobabble takes hold and becomes mainstream I don't think it's about what any one individual within the system believes anymore.

So even if some individuals inhabiting relevant institutions have some sympathy for the fact that ME is physical they feel it's not their problem, nothing they can do about it. They're just there to perform their function not rock the boat.
This mentality also helped Nazi trains run on time but I digress.

While it is obviously patently nonsense that our illness is somatic the issue of getting this to change is political.
I think Esther12 said something to this effect.

Most people will simply not challenge the system, especially if there is no personal stake.
Thankfully we increasingly have people who do advocate for us alongside us.

The interesting part though is the possibility of a few of the well degreed, well respected, overpaid psychobabblers actually believing their own fantasy. That is, their position isn't merely political to maintain their turf but they've succumbed to their own delusion regarding the nature of ME. Is that somatoform do you think?

 

[Seven7]

Yes, I had a blog about that: http://forums.phoenixrising.me/index.php?entries/the-fall-of-the-tower-of-babble.824/
Psychiatry (is) The Science of Lies
PS Holding the mirror up as you put it is basically a simple philosophy trick. It reveal fallacious things, and other kinds of BS.

Alex, what I have learn about this whole IOM thing, is that the reason they get away with it all, is that they know how to play the game. Like I have just found out you need big studies, publish, replicate them, when all is set and done, no one will remember all the comments, controversy and bunch of BS the study was about. When this committee come along (like IOM), the only evidence is theirs!!! Nobody goes deeper to see what a bunch of crap it all was. So I think to beat them is to do what they do and bury them on replications.

I think our experts with something coming out need to hurry up and publish ASAP!!! So we can start replicating. A good one to replicate is the 2nd day exercise one.

Hmmm now I see why CDC (I think) didn't want to use the 2 day exercise testing, make sense, it would give us replication!!!!

 

[alex3619]

When a misplaced idea like psychiatric psychobabble takes hold and becomes mainstream I don't think it's about what any one individual within the system believes anymore.

So even if some individuals inhabiting relevant institutions have some sympathy for the fact that ME is physical they feel it's not their problem, nothing they can do about it. They're just there to perform their function not rock the boat.
This mentality also helped Nazi trains run on time but I digress.

While it is obviously patently nonsense that our illness is somatic the issue of getting this to change is political.
I think Esther12 said something to this effect.

Most people will simply not challenge the system, especially if there is no personal stake.
Thankfully we increasingly have people who do advocate for us alongside us.

The interesting part though is the possibility of a few of the well degreed, well respected, overpaid psychobabblers actually believing their own fantasy. That is, their position isn't merely political to maintain their turf but they've succumbed to their own delusion regarding the nature of ME. Is that somatoform do you think?

I agree. This is systemic. Its also a gross failure in responsibility for the entire medical profession and health related organizations, including government. Notice I said "responsibility" and not "blame". I hold these two to be separate. They are responsible because they could fix it. They are not to blame, for the most part, because they did not cause it.

My book covers rational analysis, politics, economics and managerial impact (plus a few other things I am not talking about yet). They all work together. Its still a long way from even the introduction being finished. This is not a simple problem.

Now I do think many believe in this stuff, but they have to have doubt. Many who practice psychogenic medicine are likely to have some degree of blame. However that blame is spread over large numbers of psychiatrists and organizations.

Having said that there are some individuals who have greater influence, and a higher profile in psychogenic medicine. They are not solely to blame, but they have a bigger share.

We are fighting not just psychobabble, but the medical, political, economic and managerial views that support it.

Biopsychosocial medicine is being used to support sweeping political, managerial and economic change. Its likely to be a serious failure, and is already probably causing maybe 41 deaths per week in the UK from the DWP/ATOS scandal alone (2012 data). The architects of that are not only responsible, they share blame between them. In this case the bulk of the medical establishment has taken responsibility and opposed these changes.

Both psychogenic medicine and the biopsychosocial movement are examples of Zombie Science. They are not science as we know it, and are propped up by other forces that benefit from their views. This includes government, business and medicine in general. I would like to stress that such benefit is not always financial. Sometimes it comes from increased legitimacy or influence.

 

[Snowdrop]

@alex3619

I agree.

The delivery of health care is now extremely complex. This is certainly a problem in that there are so many different agencies involved in the most basic transactions.

This problem reminds me of decades past when I could still read.
One book that I read a few times and found most interesting was 'Complexity' by Roger Lewin.

If there is too much rigidity in a system it will be stagnant and with no growth the system collapses because it lacks dynamism.
If there is too much change and increasing complexity the system will collapse under it's own weight.

We are losing out on at least two levels, to those people who's motivation is mainly financial and/or the legitimacy and influence you mention and to a system that is at least partly broken (for a variety of reasons).

As to many probably believing this stuff I don't see this as malicious either merely that it's a default position especially when their pay check is at stake.

Yet we press on because we must. If and when we can.

 

[Izola]

Like in my signature? We do need to bring this home to them. Its a question of how. I have been working on this for years, I don't intend to stop soon.

I'm pretty lame today but I'll see if I can say this or anything else right. I had one of those What a stupid jerk moments when I encountered yet another psychobabble pusher awhile back. It was on another's behalf. I spent quite some time researching to find any scientific research that even hinted that actual fact and scientific method or proof were undergirding any of the illnesses caused by neurosis nonsense. Oh, after a couple dozen "research" papers I mostly read the blurbs. I couldn't find a gurgle of factual underpinnings. What I did find was that the more you tried to find a diagnosis from the same or different doctors, the greater the chance you'll be diagnosed as psychosomatic. Of coure we know that.

 

[Izola]

Yes, I had a blog about that: http://forums.phoenixrising.me/index.php?entries/the-fall-of-the-tower-of-babble.824/

People have been trying to put a stop to this stuff for at least 91 years! I was writing my book to, amongst other things, document their prolific list of fallacies. It isn't quite true to say Psychiatry (is) The Science of Lies (Szatz) but it certainly seems to be a Cult of Fallacy.

PS Holding the mirror up as you put it is basically a simple philosophy trick. It reveal fallacious things, and other kinds of BS.

That the same Szazs who wrote "The Myth of Mental Illness?" As a freshman I struggled with it, but something must have sunken it.

Some years ago, when some of the psycho-somos were still setting up shop, I went toe to toe, nose to nose with a couple by email. Back then when I still had a caustic humor and a tight writing style. Lost are the copies of those emails. I/m sad. They would have given, I believe, some moments of levity for the CFS and ME communities.

 

[alex3619]

I'm pretty lame today but I'll see if I can say this or anything else right. I had one of those What a stupid jerk moments when I encountered yet another psychobabble pusher awhile back. It was on another's behalf. I spent quite some time researching to find any scientific research that even hinted that actual fact and scientific method or proof were undergirding any of the illnesses caused by neurosis nonsense. Oh, after a couple dozen "research" papers I mostly read the blurbs. I couldn't find a gurgle of factual underpinnings. What I did find was that the more you tried to find a diagnosis from the same or different doctors, the greater the chance you'll be diagnosed as psychosomatic. Of coure we know that.

There is no objective evidence of any psychosomatic illness. It doesn't matter if you go back to the time of Charcot, mid 19th century either. There is evidence of sick people, or people with problems, who have been diagnosed with a psychosomatic illness. This is not much different from the Inquisition diagnosing witchcraft or demonic possession. Its all based on interlocking beliefs with not one shred of evidence.

That is why I think there is a shift to looking at interventions. If people improve with CBT or GET then they have proven their theory! Not so. It tests the intervention not the underlying model. Further the evidence that CBT or GET helps with ME at least is underwhelming, and not remotely convincing.

They have failed at this so many times: diabetes, rheumatoid arthritis, lupus, gastric ulcers, multiple sclerosis - there is a very long list which I hope to assemble at some point. It might even go to hundreds of diseases, though currently its fairly solidly listed for maybe 10-30 diseases. If not enough is known about a disease to determine what it is they argue (irrationally) its psychiatric. I put forward the case on facebook that diseases of high complexity are difficult to research, and so are candidates for being misdiagnosed as psychiatric. As the complexity of the disease increases the probability of it being misdiagnosed increases. ME is so very complex, it makes diabetes look simple.

Szatz did indeed write the Myth of Mental Illness. http://www.amazon.com/The-Myth-Mental-Illness-Foundations/dp/0061771228

A big part of this seems to be a need from the medical profession to appear as always right, figures of authority, figures deserving trust. They usually have no trouble saying "I cannot prescribe opiod painkillers for this" but have huge difficulty saying "I don't know what is wrong with you or how to treat it". Their inability to cope with complexity and with the unknown is hampering the medical profession. The tentative title of my book is "Embracing Uncertainty" for a reason.

 

[justinreilly]

I have had a v difficult history with my folks over this disease, though now they are supportive. Basically because they can't accept uncertainty or ambiguity. It causes them anxiety bc they can't understand, much less control everything. And they like to be in control. A lot.

My Dad gets debilitating tension headaches if he is under extreme stress or if he drinks more than a glass of wine. By chance I came across a couple of papers describing tension headaches as somatization. Unfortunately I found those recently instead of earlier on when it might have shocked him into reality a bit.