The Strange Cases of ME Remissions Induced by SSRIs (Dr James / Dr Smith / Dr Le Fanu)

[caledonia]

This doesn't make any sense. Prozac is toxic to the mitochondria. The jury is sort of out on Zoloft - there is evidence for it being both harmful and protective of mitos.

I haven't any benefit from Zoloft for ME.

 

[silky]

@Jonathan Edwards @charles shepherd

I understand that you are both contemporaries of these doctors, what do you make of their theories and treatments?

 

[JES]

There are many ways how SSRI's could in theory be effective. Prozac as mentioned is anti-enteroviral. Furthermore, many antidepressants have effects on mTOR signaling, though it seems fluoxetine and sertraline do not. I trialed Prozac in case it would have an effect on enteroviruses, but noticed no positive effect from it. In hindsight though, the dosage was probably too small.

 

[Jonathan Edwards]

@Jonathan Edwards @charles shepherd

I understand that you are both contemporaries of these doctors, what do you make of their theories and treatments?

James Le Fanu is an old friend of mine and very good company. But I wouldn't take these episodes too seriously. I doubt James would now.

 

[silky]

James Le Fanu is an old friend of mine and very good company. But I wouldn't take these episodes too seriously. I doubt James would now.

Sorry what do you mean by episodes?

 

[Snow Leopard]

From a document on Dr Smith's protocol.

Wow, this document repeats so many myths (eg. the boom-bust nonsense, the "perfectionist"/"high achiever" myth) and makes a lot of claims about evidence that are actually unproven... It is clear it is written by a journalist who hasn't bothered to understand the underling scientific literature.

Also, the typical recovery double-speak:

Getting better from CFS/ME rarely means returning to some absolute point of recovery, he says. ‘It’s usually a case of reaching a level of functioning that the person is happy with

Sorry, but this is bullshit. Journalists and doctors who have not experienced this disease have no right to tell us what we consider to be recovery.

 

[silky]

the boom-bust nonsense

This is real no?

 

[Snow Leopard]

This is real no?

It has never been shown to be a common, nor perpetuating factor in studies that used actigraphy to measure activity levels of patients.

Doctors hear "PEM" and twist it into "boom-bust", because they don't bother to listen properly. Patients don't "boom" matching these doctors descriptions.

 

[Jonathan Edwards]

Sorry what do you mean by episodes?

A journalist telling readers to try a drug seems to me an 'episode' rather than a trial. I have not looked into Dr Smith's activities but it sounds much the same. It might be a 20 year episode but in the history of ME research it is still an episode if it leaves us no wiser than before.

 

[A.B.]

This is real no?

No, I think this is post-exertional malaise resulting in an activity pattern of rest and then mildly increased activity from a low baseline and they describe this as "boom and bust". As far as I know, studies with actometers have not shown that unusually high activity levels (relative to what is normal in the population) actually exist. Boom and bust seems to be the modern form of "overachievers working themselves into exhaustion and burnout" aka yuppie flu.

 

[IreneF]

Any large enough random group of people is going to include some with depression, and a certain proportion of them will be undiagnosed. So if you throw antidepressants at them, some are going to stick.

 

[me/cfs 27931]

Any large enough random group of people is going to include some with depression, and a certain proportion of them will be undiagnosed. So if you throw antidepressants at them, some are going to stick.

Perhaps. But in my experience, my mood didn't change much while on Zoloft (Sertraline). Just my level of functioning improved.

This is why I am revisiting Sertaline with my doctor: to see if I might regain a bit of cognitive function.

Even a 5% improvement in function would have a huge impact on my quality of life.

 

[Hip]

This paper on the immunomodulatory effects of sertraline, fluoxetine and other SSRI is interesting to browse through.

In particular, Table 1 indicates that both sertraline and fluoxetine have the ability to ameliorate the autoimmune conditions of multiple sclerosis and rheumatoid arthritis (in rodent models).

 

[Snow Leopard]

This paper on the immunomodulatory effects of sertraline, fluoxetine and other SSRI is interesting to browse through.

In particular, Table 1 indicates that both sertraline and fluoxetine have the ability to ameliorate the autoimmune conditions of multiple sclerosis and rheumatoid arthritis (in rodent models).

Regardless of hypothetical effects, these drugs have proven ineffective in clinical trials in CFS patients.

 

[Hip]

Regardless of hypothetical effects, these drugs have proven ineffective in clinical trials in CFS patients.

I am not sure if that is the case for sertraline; the only mention of a trial of sertraline for ME/CFS I can find is in this paper, where it says:

We found one RCT comparing sertraline with clomipramine in people with chronic fatigue syndrome, but the lack of a placebo group makes it hard to draw useful conclusions. 15

The reference 15 is to this paper:
Behan PO, Hannifah H. 5-HT reuptake inhibitors in CFS. J Immunol Immunopharmacology. 1995;15:66–69.

But I am not able to find a copy of that paper.

 

[ebethc]

That's my working theory too.

There is definitely a big impact on the gut by those drugs, in my experience... For me it was extremely negative. My digestion is much worse since then. I also gained weight, partly because severe carb craving like I've never experienced before (esp on paxil, but I tried them all..).. Plus, my stomach always hurt so all I wanted to eat was noodles and bread...

I kept telling my doctor(s) that I wasn't depressed; I felt like I was always walking around w 50% of the flu, persistent digestive problems, I always got sick, etc. They just kept telling me, "Oh, you have a somatic depression"... Then I got mono and took a nosedive....

That chapter (~15-18 yrs ago) is my biggest regret for managing this illness.. "First do no harm" is seriously BS, and buyer beware is everything.

Here's an interesting article from Yale Journal of Medicine w comments on the intersection of pharma + advertising + patient care; italics are my mine... Unfortunately, no comments on the whole trendy idea of rx'ing for "somatic" depressions or CFS.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3313530/

• Public controversies and medical uncertainties concerning antidepressants have become the norm [1,2,3]. Since direct-to-consumer (DTC†) advertising was approved by the FDA in 1997 [4], pharmaceutical companies have been accused of exaggerating claims of drug efficacy [5], downplaying the health risks of antidepressant use [6,7,8], and hiding behind smokescreen public relations slogans of medical “awareness campaigns,” while slyly growing drug markets by over-medicalizing everyday experiences such as sadness, anxiety, and shyness [9,10]. In this controversial arena, the science of antidepressants has become uncertain, and physicians, policymakers, and consumers are left with few brute facts about if and how antidepressants work. Yet physicians want effective medicines, patients and policymakers want clarity of information, and pharmaceutical companies need to appear to be providing both. To provide a better understanding of the current predicament around psychopharmaceuticals, this article will look at three issues: 1) How pharmaceutical advertisements and professional marketing literature portray an idealized and simplistic relationship between medications and psychiatric illness; 2) how other stakeholders (patients, scientists, physicians, regulatory agencies, professional societies) accept or challenge a simple neurobiology of mental illness; and 3) how the placebo effect has become an increasingly important issue in these debates, including the new role of drug advertising to influence the placebo effect directly.

 

[Snow Leopard]

I am not sure if that is the case for sertraline; the only mention of a trial of sertraline for ME/CFS I can find is in this paper, where it says:


The reference 15 is to this paper:
Behan PO, Hannifah H. 5-HT reuptake inhibitors in CFS. J Immunol Immunopharmacology. 1995;15:66–69.

But I am not able to find a copy of that paper.

Neither can I, but I don't much care. I was speaking about SSRIs as class of drugs.

The research community seemed to lose all interest at around 2000, probably for good reason - lots of null results.

 

[Hip]

Neither can I, but I don't much care. I was speaking about SSRIs as class of drugs.

The research community seemed to lose all interest at around 2000, probably for good reason - lots of null results.

When I skimmed through the above paper of immunomodulatory effects of SSRIs, not all the SSRI had the same immune effects, so it is possible that sertraline might do something unique that other SSRIs do not do.

And we know that fluoxetine has potent antiviral effects for enterovirus in the brain (but not in the blood, as fluoxetine concentrates in the brain tissues); yet other SSRIs tested did not have these anti-enteroviral properties. However, fluoxetine has not shown benefit for ME/CFS in clinical trails.

But I think you and @Sidereal are probably right that this SSRI treatment of ME/CFS could be more to do with the general hype about SSRI drugs when they first came out, rather than any major benefit they have for ME/CFS.

 

[Snow Leopard]

And we know that fluoxetine has potent antiviral effects for enterovirus in the brain (but not in the blood, as fluoxetine concentrates in the brain tissues); yet other SSRIs tested did not have these anti-enteroviral properties.

As yet, we don't yet have compelling clinical trial evidence that it has potent treatment effects in paitients with chronic enterovirus infections/encephalitis/acute flacid paralysis. (I must admit I'm curious about the latter)

 

[me/cfs 27931]

There is definitely a big impact on the gut by those drugs, in my experience... For me it was extremely negative. My digestion is much worse since then. I also gained weight, partly because severe carb craving like I've never experienced before (esp on paxil, but I tried them all..).. Plus, my stomach always hurt so all I wanted to eat was noodles and bread...

I kept telling my doctor(s) that I wasn't depressed; I felt like I was always walking around w 50% of the flu, persistent digestive problems, I always got sick, etc. They just kept telling me, "Oh, you have a somatic depression"... Then I got mono and took a nosedive....

That chapter (~15-18 yrs ago) is my biggest regret for managing this illness.. "First do no harm" is seriously BS, and buyer beware is everything.

I also have had my share of side effects after 3 dozen psych meds, including hallucinations, rashes covering my back, binge eating, dyskinesia, akathisia, severe insomnia and panic attacks so severe they resulted in hospitalization.

Also, like you, I was mislabeled a depressed patient for most of my life. If not for the 2015 Institute of Medicine report, I would still be.

And you are correct, doctors don't warn about the side effects, nor in my experience do they take any sort of responsibility when side effects happen.

Out of those 3 dozen psych meds, Sertraline is the only one I am considering trying again. Simply because it correlates with a remission and had few unpleasant side effects.