"But I've seen many clients benefit from ..."

[bubbles]

Is anyone aware of any papers that specifically address the issue of "but I've seen many clients benefit from ..." and therefore they are effective, despite the placebo evidence etc. It's a very hard point to argue against, since it is essentially "I'm right and you are not".

 

I've heard Goetsche and perhaps Whitaker talk about how it is probably the passage of time, rather than a specific drug effect; and Kirsch talks about placebo, but that isn't what I'm after. I'm specifically after something that addresses the question of why a provider might think that an SSRI might work, when it might in fact be those other things that Goetsche and Whitaker and Kirsch say.

 

I've looked through the journal articles, but can't see anything appropriate. I'm still looking elsewhere too but if anyone knows of something, it would be great.

Cheers, Bubbles

[Altostrata]

bubbles, that's just what doctors say when they're making their own guesses. I don't believe anyone would study that specifically.

 

Most doctors follow mainstream sources for medical information, usually the most prominent medical journals or medical societies, such as American Psychiatric Association and the American Journal of Psychiatry. They do not pay attention to critics such as Goetsche, Whitaker, and Kirsch. They don't believe anything unless it's in the AJP -- and still, many are so busy they're years behind in their reading.

[bubbles]

Yes, I agree. It's just impossible to argue against. I guess it's just a case of gathering original journal articles and insisting that they address that specific point, and now allowing the conversation to get bogged down in "but my patients benefit".

[GentleSteps]

22 hours ago, bubbles said:

"but I've seen many clients benefit from ..."

Hi Bubbles,

 

Another reason there might not be any studies is that, by definition, the doctors who say this are basing the claim specifically on their experience in clinical practice.  

 

Which in my mind ties into the related issue that the only studies on SSRI efficacy were for no more than 8-12 weeks.  So, putting aside (for the sake of argument) the no-better-than-placebo studies, any efficacy in the trials at best was based on short-term prescribing. 

 

Yet as we know - in clinical practice the psychiatrists  (and GPs) have been prescribing the drugs for far longer - for years and years, including telling some (many? who knows?) of their patients "you have to be on this forever, just like a diabetic and insulin," etc.  This practice has constituted a vast uncontrolled clinical-practice trial on millions of patients - with scant consideration of the long-term damage deriving from long-term prescribing, despite studies by, e.g., Fava, which have been available of prescribers to consult for many years.  So as you aptly point out, the prescribers' statements about "but I've seen it work with my patients" - based as they are on their unauditable private clinical practices - and also with respect to these indefinite, long-term prescribing patterns (unsupported by studies) - are completely impossible to refute.  They rely for their validity on the (presumed) accuracy of these prescribers' statements.  That accuracy, of course, may be highly questionable given the plethora of potential biases at play (including the need to feel that their "treatment" is working; direct and indirect indoctrination by Pharma; failure to consider confounding factors such as parallel psychotherapy with a separate therapist or psychotherapy with the prescriber; the effect of a patient feeling cared about by a doctor, etc.) 

 

Thank you for posting about your search for studies - for having us reflect on just why there might not be any.  

 

 

[bubbles]

I will keep looking but I think just the process of thinking about it has clarified this for me. I will insist that they engage with the literature, and leave if they do not. The trouble is that it is very difficult to do that when distressed.

[Happy2Heal]

I don't know of any studies nor do I know of anyone who might be eager to do them, however on this site, they address the issue of both clients/patients and drs believing that these drugs are effective, and why that might be

 

https://www.theinnercompass.org/learn-unlearn

 

I found this esp insightful because for years, I felt that the ADs had helped me in some way. I now realize that there were probably many factors that led me to think the drugs "helped"- my intense feelings of grief over the loss of my father and my anxiety and insomnia over dealing with issues related to mortality- all of those feelings were blunted by the drugs. This was ok for the short term but it also blunted all positive feelings too. 

 

another factor that many ppl ignore is that some ppl are on temporary disability for a 'mental illness' and may feel the need to be taking 'medication' to support their claim, and/or may not have a choice- for many disability claims to go thru, you must be "cooperating with treatment" which almost always includes medications.

There are many many reason for ppl to start taking these drugs, and for them to think they are helping or to report that they are helping or both. 

 

 

If antidepressants are not very effective, why do I/do some people seem to become much better when taking them?

If you read all of ICI’s mini-booklets on the major psychiatric drug classes you will notice that, based on the clinical trial information that was provided to the FDA, most psychiatric drugs seem to have at best very modest, short-term effectiveness in helping people diagnosed with mental disorders. These findings generally match the findings in the broader scientific literature as well. Yet some people report that they benefit immensely from taking certain psychiatric drugs. What is going on?

Many psychiatric drug trials do show that a percentage of people respond much more positively than most other people to certain psychiatric drugs. However, the studies generally cannot shed light on why that’s happening. Are these random, “lucky” occurrences? Is there a particular subgroup of people who respond better to certain psychiatric drugs due to unknown genetic, biochemical or lifestyle differences? Do a person’s responses tend to be greater or smaller depending on what is actually causing the person’s problems?

One important factor has been extensively studied: Psychiatric drug trials tend to have the highest placebo response rates in all of medicine. Most psychiatric drug trials show the majority of participants scoring substantially better on improvement tests whether they are taking a drug or placebo – apparently, simply hoping or believing that they are taking a potentially helpful psychiatric drug seems to be very helpful for many people. Indeed, in most trials this placebo effect accounts for a much larger portion of people’s apparent improvements than the drugs themselves. So while we can determine scientifically that the overall positive effects of a particular psychiatric drug are relatively modest, some people will experience the effect of the drug plus a very substantial placebo effect, which can make the drug seem to be much more effective than it otherwise might to those people personally.

There can also be, for example, “social placebo” effects, where having the encouragement and support of mental health professionals, family, and other people around you when you take a psychiatric drug can change both their and your feelings and behaviors in ways that can contribute significantly to the positive overall impacts of a drug. In addition, after experiencing some initial benefits from a drug, over time some people can have a tendency to attribute further positive developments in their moods and experiences to the drug while attributing negative developments to re-emergence of their own underlying problems.

Alternatively – and some experts argue most importantly – some people might simply more strongly like or have positive therapeutic responses to the sedating, numbing or stimulating effects of certain prescribed psychiatric drugs on their feelings, experiences or behaviors, in similar ways to how some people respond positively to the effects of coffee, cigarettes, painkilling medication, alcohol, marijuana or other drugs.
~~~~~~~~~~~~

 

from Inner Compass Initiative 

https://www.theinnercompass.org/learn-unlearn/intervention/antidepressants

 

[Happy2Heal]

oh there's another section on that site I'd not noticed before, check out this if you're interested:

https://www.theinnercompass.org/learn-unlearn/intervention/how-outcomes-are-measured-psychiatric-research

 

[bubbles]

18 minutes ago, Happy2Heal said:

oh there's another section on that site I'd not noticed before, check out this if you're interested:

https://www.theinnercompass.org/learn-unlearn/intervention/how-outcomes-are-measured-psychiatric-research

 

Great resource, thank you!

[Happy2Heal]

this was just posted on FB um, yesterday

 

there's a dr in Canada doing research, not on whether or not the drugs work,  I guess, but more on discontinuing them but there may be overlaps with effectiveness studies idk

 

 

http://www.cbc.ca/radio/whitecoat/i-was-sobbing-uncontrollably-patients-say-antidepressants-difficult-to-quit-1.4658787

 

"Dr. Dee Mangin is one of the few doctors researching what happens when people stop taking antidepressants. Mangin is a family physician and associate professor in the department of family medicine at McMaster University in Hamilton, Ont. 

...........

 

Dr. Mangin recently completed the first rigorous study involving long-term users of Prozac, which has not yet been published.

"I realized that I didn't have the data I needed to have a conversation with a patient about how long we should carry on (taking antidepressants), when we should stop, how we should stop," she said. 

"So we have a big chunk of people in the population taking these medications in the long term and really there are no studies in primary care to support that."

In the study, half of the patients were tapered off Prozac over time, the other half believed they were being tapered but got their regular dose. 

Mangin can't share all her findings until the paper is published, but she did reveal that some of the patients had to restart the drug because the withdrawal symptoms were unbearable.

She said it's evidence that doctors need to listen to patients when they report problems coming off antidepressants."

[JanCarol]

My opinion is this:  the drugs are destructive in a slow way.

 

The drugs induce changes (Joanna Moncrieff addresses this quite nicely in "The Myth of the Chemical Cure")  and we mistake those changes for "better."

 

Peter Breggin also compares ECT - people who are struck by lightning can be quite euphoric after the experience.  The changes can be dramatic, and are often interpreted as "better."

But whatever made you depressed - maybe you can live with that stifling job, crippled relationship, toxic house, overbearing friend, or narcissistic parent - now that you are drugged, these bother you less.  So you function.  This is "better," but the problem is still there.

Over time (and we're getting into my pet theories here, but I reckon Dr. Kelly Brogan would agree), your endocrine & digestive systems get slowly destroyed.  Mysterious illnesses like Chronic Fatigue, Fibro, Crohn's, IBS, and even cardiovascular events - are not tied to the drugs.

 

Someone who improves - has not been on the drugs for longer than 10 years.  It is extremely rare to find someone after 10 years who is not starting to struggle with:  metabolic disorder, gastric reflux, sexual dysfunction, muscle dystonias, chronic pain, other endocrine problems (who knows, maybe even PCOS or fibroids or endometriosis, too?), as well as direct drug damage like kidney & liver (tying into the metabolic issues).  But at 10 years they may not connect their myriad health problems to the drugs.

 

So - when you see someone who brightens and is so happy about their new prescription, just remind yourself, "it's the honeymoon," and that they've made an extremely bad marriage.  When I have had friends make bad marriages, I have learned to be there for them, and listen, and not offer advice or help until it is asked for.  Or let them know that there are other options - and then shut up.  It's hard, because I can watch their brain and health deteriorate (I have a lot of long term friendships!), but it can be impossible to get a friend away from a bad marriage/relationship, too.

This goes for rapid tapers and cold turkeys, too - there are many people who say they are fine, but they are not looking at the long term effects.  And many of the effects might be blamed on "chronic fatigue," "fibromyalgia" "fatty liver" or - most commonly, "relapse."

[Happy2Heal]

1 hour ago, JanCarol said:

So - when you see someone who brightens and is so happy about their new prescription, just remind yourself, "it's the honeymoon," and that they've made an extremely bad marriage.  When I have had friends make bad marriages, I have learned to be there for them, and listen, and not offer advice or help until it is asked for.  Or let them know that there are other options - and then shut up.  It's hard, because I can watch their brain and health deteriorate (I have a lot of long term friendships!), but it can be impossible to get a friend away from a bad marriage/relationship, too.

that's a really good analogy.

I have an extremely hard time keeping my mouth shut when someone mentions any kind of psych drug- I just have to walk away. 

 

 

 

I agree, these drugs do cause all sorts of damage, and it may be a long time before we know just how much, if anyone ever cares to study it.

 

[bubbles]

I don't know if that study will address effectiveness (I doubt it, from the last sentence in that news article), but she sounds like she's listening to patients and believes us, so it looks like it will be worthwhile. I look forward to reading it when it is out.

[mammaP]

Love the analogy of a bad choice of marriage partner, its perfect! 

 

There is also the reinstatement benefit. Someone stops the drug, goes into withdrawal and reinstates. They improve dramatically very quickly and that is taken as a sign that they have the illness that needs the drug. Doctors will NOT accept it is withdrawal and most of the time neither will the patient. I read it many time,  "I NEED MY AD" because they fall apart/cant sleep/function/ without it.  We have several medical documentaries that shadow doctors, hospitals, ambulance crews and police. Time and again someone is in crisis and suicidal, the first thing they ask is if the patient has missed medication and invariably they have stopped it recently. These documentaries show this as the mental health crisis, more and more people are needing medication. They NEVER see that medication is responsible, either by side effects or withdrawal.  

Edited May 16, 2018 by mammaP

[Rabe]

Hi Jan Carol...wanted to thank you for sharing that!  I started Clonazepam for my panic disorder with agoraphobia and was on it 25 years??

Along the way started with gastritis and GERD and colon problems and had a heart cath that was clear yet my stress test showed an ischemic L ventricle, CFS, abnormal stress tests and told table tests, problems with salt and foods, allergies, endometriosis, etc etc etc!!

I didn't connect it to the medication at all...I have thought about it more since starting tapering but reading your post really hit me in the face because just this morning again I was thinking to myself could all or most of my problems been related to the medication I was taking to not have the horrible anxiety cause when the dose was doubled I then had SO many HUGE problems starting with the psoriasis that has improved significantly as the dose has decreased (and that I was thinking I always had in one ear when I was taking it)....I mean I just think the Clonazepam caused so many other problems along the way that I and no doctor ever connected.  I went to the Mayo Clinic because of Cortisol issues and Adrenal issues and low BP then high BP etc and they could not piece anything together.  What a sad thing!!

Wish somehow they could all be informed!!!  Thank you again!!!!!!!

[Rabe]

I have no idea really if the K+ issues I am having are related to the Clonazepam or the Viibryd they started.  It is SO crazy!!  I SO wish I never would have started that as more than one thing and you don't have a clue who the real culprit is!!

[bubbles]

10 hours ago, mammaP said:

These documentaries show this as the mental health crisis, more and more people are needing medication. They NEVER see that medication is responsible, either by side effects or withdrawal.  

 

I think this is why doctors think there isn't much withdrawal. They only see the zaps as w/d and the rest is the illness returning.

[mammaP]

Last night I watched a fly on the wall documentary in a GP surgery. A girl there was obviously suffering side effects of ADs, she was angry, couldn't keep still, crying all the time and feeling useless because she couldn't look after her little one properly.  The doctor said they need to change the medication and she would prescribe venlafaxine. First she had to cut the escitalopram dose by taking half a tablet for a week then stopping. After  a few days 'washout' she can start the venlafaxine. I turned it off, I couldn't watch any more. 

[Happy2Heal]

21 hours ago, mammaP said:

Love the analogy of a bad choice of marriage partner, its perfect! 

 

There is also the reinstatement benefit. Someone stops the drug, goes into withdrawal and reinstates. They improve dramatically very quickly and that is taken as a sign that they have the illness that needs the drug. Doctors will NOT accept it is withdrawal and most of the time neither will the patient. I read it many time,  "I NEED MY AD" because they fall apart/cant sleep/function/ without it.  We have several medical documentaries that shadow doctors, hospitals, ambulance crews and police. Time and again someone is in crisis and suicidal, the first thing they ask is if the patient has missed medication and invariably they have stopped it recently. These documentaries show this as the mental health crisis, more and more people are needing medication. They NEVER see that medication is responsible, either by side effects or withdrawal.  

this, so much this

 

a Boston channel on TV was reporting an "alarming" increase in suicide attempts in children. They mentioned a 9yr old girl who tried to jump out of a moving car. Later they were interviewing the girl (she was a teen by this time) and she says "I didn't care what happened, I took all of my pills"

 

her pills... what pills would those be?? probably ADs

They are giving more and more children these drugs and other psych drugs, and blaming the increases in suicidal ideation and attempts and other behaviors on anything else BUT the drugs themselves.

 

it drives me nuts.

When there's a shooter situation, how many times have they said, he (usually it's a male) recently stopped taking his medication and immediately they take that to mean, he really needed that medication, because look what happened when he stopped it.

I admit, before I knew about WD, that would have been what I thought too. He's supposedly ok on the drug (who knows, cuz nothing dramatic happened) Goes off the drug, he goes beserk- must have needed that drug.

 

This is why the word needs to get out about these drugs.

Sadly, just the fact of having been prescribed these kinds of drugs immediately makes most ppl assume you're "nuts" and "needed" the drug, because what dr gives these drugs to ppl who don't "need" them.... so regardless of what your WD symptoms are, and how obvious it is that it's WD, ppl are going to be biased into thinking it's your "mental illness"

 

so even more than the fact that ppl need to know about WD, they need to know that Drs are Rxing this stuff for stupid sh*t like grief and a single panic attack, or for PMS etc etc

(I had a dr try to give me seroquel for PMS- his wife was on it and he raved about how much it made HIS life better because she no longer complained. Yeh she was too drugged to do anything most likely, seroquel is incredibly sedating. I was given it as a sleep med when I discontinued some other med and had WD and didn't know it, because I was told I had a new mental illness)

 

oh this entire situation makes me so angry some times.

ok most of the time, so that's why a lot of times I need to just walk away

 

 

so glad we have this forum so I can vent my frustrations about it all.

 

[FarmGirlWorks]

4 hours ago, Happy2Heal said:

a Boston channel on TV was reporting an "alarming" increase in suicide attempts in children. They mentioned a 9yr old girl who tried to jump out of a moving car. Later they were interviewing the girl (she was a teen by this time) and she says "I didn't care what happened, I took all of my pills"

Wow, just, wow... that last sentence was like a punch to the gut. It makes me sick when kids are drugged. Thanks for posting this.

[TikkiTikki]

I find this whole topic of whether ADs work really thought-provoking, because I am one of those people who feels they really did help me, and not in a placebo way.

 

Prior to ADs,  I was waking at 5am in absolute fear, unable to get thoughts out of my head, extremely 'labile' (crying all the time), constantly feeling all the pain in the world – everyone lonely, desperate, cruel and sad. Anything good seemed like an illusion, just people fooling themselves and working meaningless jobs to buy crap they don't need and raise disconnected kids etc etc And this view of the world felt like THE TRUTH, and anything else just some version of denial. OK, so I was clearly depressed, with the narrow, tram-track thinking characteristic of it, with constant stress hormones jolting my system etc etc.

 

When I took Zoloft the first time, it took a while, but I can remember the sudden feeling of safety and warmth that enveloped me. One day I just felt okay, and after a sublime evening nap, woke a little, smiled at my partner for the first time in months, and went back to sleep. Honestly, it was like a switch from black-and-white to full colour. Feeling safe and warm, on a cellular level, was my strongest feeling.

 

So did the Zoloft change my life problems and thinking styles that had got me in that mess in the first place? Of course not. That I had to do. But the AD wrought a biochemical change so profound that I was convinced, and still am, that I am one of the lucky (?) minority who respond well to SSRIs in the short term.

 

Contrast with my friend's mum, who took Effexor after her husband's death, felt no change whatsoever and after six months CTed with absolutely no withdrawal effects. 

 

So I would agree with JanCarol that this is a kind of 'honeymoon effect', and that longterm, these drugs do more damage than harm to most people. I should never have been on them for another 11 years, and they have caused other 'mental health' problems for me due to inertia, weight gain, blunting, lack of motivation, and disconnection from myself, and all the life choices that follow from those things.

 

But is it only a placebo effect when they 'work'? In my case, absolutely not. They do something, they change the brain, they reboot, whatever, and perhaps for some that is a profoundly positive effect, for the majority it has a middling to nil effect, and for others it has a profoundly destabilising and negative effect, from even a small dose.

 

[TikkiTikki]

Happy2Heal, MammaP – I agree so strongly with how overprescribing and no understanding of withdrawal distorts every news story we hear about people and ADs. 

And children ....arghhh

A friend of mine took her quirky, extremely intelligent, sensitive, probably ASD 6 year old to a doctor who prescribed an SSRI within minutes of the first consultation. Thinking of the misery contained on these forums and the delicacy of a 6-year-old brain makes me want to throw up.

[TikkiTikki]

On 5/17/2018 at 10:56 AM, bubbles said:

 

I think this is why doctors think there isn't much withdrawal. They only see the zaps as w/d and the rest is the illness returning.

 

Yes, yes, yes. 

[bubbles]

Quote

 

So I would agree with JanCarol that this is a kind of 'honeymoon effect', and that longterm, these drugs do more damage than harm to most people. I should never have been on them for another 11 years, and they have caused other 'mental health' problems for me due to inertia, weight gain, blunting, lack of motivation, and disconnection from myself, and all the life choices that follow from those things.

  

But is it only a placebo effect when they 'work'? In my case, absolutely not. They do something, they change the brain, they reboot, whatever, and perhaps for some that is a profoundly positive effect, for the majority it has a middling to nil effect, and for others it has a profoundly destabilising and negative effect, from even a small dose.

 

 

I think the issue with the honeymoon effect and whether or not they work in the short term is that for many of us there is no short term. I tried to discontinue after I'd been well for six months (as per guidelines) and it wasn't possible, although I followed my doctor's instructions so perhaps it wasn't possible doing it *that way*. If I could have discontinued then easily, maybe it would have been a worthwhile thing to have been treated by SSRIs, but I couldn't. And, I don't believe that many people do.

 

What I see is people who say "it's easy to get off an SSRI, just do what I did"; but then they crash soon after and end up on a new drug, or worse, get a new diagnosis and even more drugs... (Loads of them on YouTube.) So although there are people who do say they can get off, they are not getting off by my definition.

[TikkiTikki]

19 hours ago, bubbles said:

 

I think the issue with the honeymoon effect and whether or not they work in the short term is that for many of us there is no short term.

 

Yes, I suppose that is the big issue. I think, maybe if I'd been on it for 1 year, then tapered for 2 years ... and already that's looking like a fairly lengthy intervention, with a 2-year taper pretty optimistic. You may have been able to do something similar after 6 months, if you'd known how slowly to taper, but again, some people do a 2 years plus taper and still wind up in trouble.

 

I suppose I'm curious about how many studies come out stating ADs have little proven efficacy above placebo because it seems so at odds with my own experience. But i think understanding how to read scientific studies is a learning in itself that I am slowly coming around to. They investigate within very narrow parameters, and can both flatten and exaggerate the findings about any individual within them (obviously). And in my case, had I not embraced and run with the physical relief I felt to create changes in my life, after a few months I maybe wouldn't have felt that much better. 

[ChessieCat]

You might find this interesting.  Try to listen to it from a research perspective.

 

Kirsch obtained drug study information through Freedom of Information.  The video explains things fairly well but you might need to watch it a couple of times.  Video:  Irving Kirsch:  Emperor's New Drugs:  Antidepressants and the Placebo Effect (1 hour 20 minutes)

 

 

Approval Criteria Used by the FDA

Antidepressants and the Placebo Effect by Irving Kirsch (link to full article)

Abstract:

Antidepressants are supposed to work by fixing a chemical imbalance, specifically, a lack of serotonin in the brain.  Indeed, their supposed effectiveness is the primary evidence for the chemical imbalance theory.  But analyses of the published data and the unpublished data that were hidden by drug companies reveals that most (if not all) of the benefits are due to the placebo effect.  Some antidepressants increase serotonin levels, some decrease it, and some have no effect at all on serotonin.  Nevertheless, they all show the same therapeutic benefit.  Even the small statistical difference between antidepressants and placebos may be an enhanced placebo effect, due to the fact that most patients and doctors in clinical trials successfully break blind.  The serotonin theory is as close as any theory in the history of science to having been proved wrong.  Instead of curing depression, popular antidepressants may induce a biological vulnerability making people more likely to become depressed in the future.

Excerpt:

How Did These Drugs Get Approved?
....
The FDA requires two adequately conducted clinical trials showing a significant difference between drug and placebo.  But there is a loophole:  there is no limit to the number of trials that can be conducted in search of these two significant trials.  Trials showing negative results simply do not count.  Furthermore, the clinical significance of the findings is not considered.  All that matters is that the results are statistically significant.
....
(NB:  emphasis in abstract and excerpt are mine)

 

 

[bubbles]

I think we tend to dismiss the placebo effect as a bad thing, but I see it as positive. If most of the effect was placebo, then I got myself better. That means I can do it again. 

 

 

[Happy2Heal]

9 hours ago, bubbles said:

I think we tend to dismiss the placebo effect as a bad thing, but I see it as positive. If most of the effect was placebo, then I got myself better. That means I can do it again. 

 

 

 I could not agree more!

when I realized that so much could change by just believing something is going to have a positive effect, I was elated.

 

it can work the opposite way too: If you believe something won't  help or work,  chances are that you won't see any improvement. This is why  believing that your body is going to heal from the assault of these drugs is so important, in my opinion.  You need to believe it's possible to even be looking for the evidence that things are getting better. If you think you're stuck in a horrible dark place, you'll never look up and see the light that is there.  Or you may not recognize it when you do see it- because it doesn't fit in with what you are expecting to see.

 

 

there have been simple experiments done, you can do this one yourself- ask a friend to look a photo and find and remember all the things they see that are green

 

then take the photo away and ask them, how many things did you see that were blue? they won't be able to name many, if any, because they were looking for things that are green.

it's very much the same with our every day expectations.

 

 

 

This is great news to me, because it means that changing my beliefs has a huge effect on my emotions,  my thoughts, my moods and my life in general

 

This is a very empowering thing to know.  

 

I love this chinese fortune I got a couple of years ago - I keep it on my fridge

 

it simply says

YOU ARE WHAT YOU THINK.