ME/CFS and depression co-morbid needing independent treatment

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Katie

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I know we haven't published the guidelines yet but publicly referring to someone as a troll either directly or indirectly will not be acceptable on these forums. Suggesting someone may be a troll because of their ideas rather easily falls into the 'pejorative characterization' category. Viewpoints should stand or fall based on the weight of evidence one brings to the table not on who's delivering the evidence.

If you feel that someone has 'invaded' the forums then please contact one of us privately but the idea of invasion itself is rather foreign to the concept of a forum. What we are chiefly worried about are people whose behavior - not their ideas - are disruptive to the free exchange of ideas.

But Alice did not call someone a troll, she spoke of a troll on another group that ended up with a police caution which is a serious matter and not something the police would do on spurious evidence. I don't see how Alice has been perjorative towards anyone. I don't mean to cause a fuss, but I found this post quite harsh for everyone to read publically. If suspicions should be dealt with via PM perhaps posts like this should be too.

Looking forward to some proper guidelines up soon then we'll know where the ground lies.
 

Quilp

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Troll and Quilp

Calling an individual a 'Troll' is totally unacceptable, we most certainly can agree on that; but with reference to the above quote I have to take exception.

No names were mentioned, no descriptions expanded upon. It was a throw away comment, possibly alloyed with slapstick humourous intentions.

I accept that there is a need for guidelines and I respect your attempts in evolving these parameters. I am sure it is to be welcomed by all; however every fibre of my being is telling me that this is wrong.

This board is multinational, much to your credit, with context, translations, phonetics, interpretations. In casting your net so far and wide, you risk catching those whose intentions are nothing if not honourable. Who then becomes the guilty party ?

I want to finish by telling you that 'Quilp' is a fictional character in a Charles Dickens book. He's described as an 'ugly, fiendish dwarf with bad intentions' :eek: !!! I just looked up the word Troll and i've found that we are one and the same !

Seriously, I think we need to take a closer look at this.

Kind regards, Mark
 

Mark

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Thanks everyone for your responses to my post about depression and paranoia, they've been most informative. Several people have echoed what I was thinking about, which was not really a psychiatric diagnosis of paranoia, but rather the doubt, fear and uncertainty caused by living with the often unvoiced suspicion that one might be subconsciously causing one's own physical symptoms. I think all the posts have showed that the evidence is clear that ME/CFS does not in itself cause depressive or other mental illness.

In the context of recent events, on reflection I can see that my post might have been easily misinterpreted, so in case there's any confusion about that, I want to make it clear that I was thinking primarily about my own experience there, and not about recent events. I've already described some of my depressive illness. Paranoia was perhaps the wrong word for the other part of what I was wondering about, because as has been pointed out, there's a big difference between the clinical and layman's uses of that word. I suppose I was thinking aloud about something that seems incredibly significant to me: the effect on an individual (me, and presumably all of us to some extent) of the suggestion or suspicion that their physical illness may have a psychological root.

In many ways I have been very lucky, because the psychologising of my own illness has been gradual, gentle, well-meaning, nuanced, and subtle. I have never felt that I would be in danger of sectioning if I declined the offers of CBT. Nevertheless, even before the first mention was made, I had begun to sense that there was something odd about my GP's attitude: he seemed to be excessively downplaying one or two clearly visible symptoms, and he seemed to be somehow suspicious of what I was describing, for no reason I could guess at. When I challenged him and discovered that he did indeed suspect a psychological cause behind my myriad physical complaints, his behaviour suddenly all made sense, and I quickly moved on to another GP.

I left the next GP in no doubt, from the word go, that I was not interested in any suggestion that my illness had a psychological root, and that if he believed that and failed to tell me so, I would consider that a disgusting breach of ethics, no matter what he learnt at university. So he hasn't troubled me on that score, but he still occasionally suggests that CBT might help me develop better coping strategies, and in any case, the damage is already done: I can't really trust a doctor now.

The fractional but nagging element of doubt has been there in my own mind ever since: is it really possible that my physical symptoms have a psychological root? I feel certain they do not, there is no reason to believe that they do, yet it's something I cannot disprove, and the medical world seems obsessed with this idea for some unknown reason. Could it really be true that they are right? I know in my heart it's not true, but once the idea is out there, it never quite goes away. And can I trust my GP when he says he does not believe my illness has a psychological root? I know how he was trained; I know he must have his doubts as well, and now I've seen training videos that instruct him not to reveal his suspicions to me directly! So now I know that trust between us is impossible, I know that I can't trust doctors, and maybe I can't even trust myself.

What I'm trying to say is: this concept is out there, and it seems to me that whatever you call the resulting disturbances, it has a ripple effect on us all. We deal with it in various ways. Sometimes we deal with it by outright, clear and angry denial: we allow no suggestion of psychological explanations, we even come to hate all psychology and psychologists, and we lash out at anyone who suggests they may be right. When we do, we are successfully resisting the idea, but it has still managed to change who we are. Some of us, sometimes, turn in on ourselves, and we are plagued by self-doubt and insecurity. Some take one path, some take another, and I suspect most (myself included) have reacted in both ways at different times. All of us are separated from our friends, family and society by the way we wrestle with this idea. And most tragically of all, we can become separated from each other by it, and we can fall to arguing amongst ourselves - all thanks to that original poisonous idea sowing seeds of doubt in our minds.

Cort, I hope you have misinterpreted Alice_Band's post: I read her mention of trolls as a friendly warning, not as an insinuation. I wasn't being naive, I just chose to read it that way. Alice isn't the only person to warn me that just because I have never met a troll, does not mean they do not exist, and out of respect I have to take that friendly warning seriously. I will have to be wary - so now I have a new seed of doubt, something new to fear, and a reason to distrust people who express contrary views. But the poisonous potential of that suspicion of trolling somehow reminds me of the poisonous potential of the unfounded suggestion of psychological illness - both are forms of fear and doubt which can separate people from each other.

Even if all that suspicion may sometimes be well-founded, all I do know for sure is that often it is not, and if I approach someone who is actually genuine with mistrust - because they betray Stockhausen-like behaviour, or because their reaction to the theory of the psychologists lacks the outrage and anger I feel myself - then I risk adding further abuse to a person who suffers like myself and currently deals with it in a different way. Such people are even less free of the psychological web of confusion than myself - perhaps I'm lucky to be stubborn enough to withstand the weight of that constant suggestion - so in the end I'm more worried about falsely accusing those people than I am of wasting my time arguing with a troll. Perhaps I'm just trying to follow the guideline my doctors seem to have misunderstood: First, do no harm.
 

flybro

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Cort, I hope you have misinterpreted Alice_Band's post: I read her mention of trolls as a friendly warning, not as an insinuation. I wasn't being naive, I just chose to read it that way. Alice isn't the only person to warn me that just because I have never met a troll, does not mean they do not exist, and out of respect I have to take that friendly warning seriously. I will have to be wary - so now I have a new seed of doubt, something new to fear, and a reason to distrust people who express contrary views. But the poisonous potential of that suspicion of trolling somehow reminds me of the poisonous potential of the unfounded suggestion of psychological illness - both are forms of fear and doubt which can separate people from each other.

Even if all that suspicion may sometimes be well-founded, all I do know for sure is that often it is not, and if I approach someone who is actually genuine with mistrust - because they betray Stockhausen-like behaviour, or because their reaction to the theory of the psychologists lacks the outrage and anger I feel myself - then I risk adding further abuse to a person who suffers like myself and currently deals with it in a different way. Such people are even less free of the psychological web of confusion than myself - perhaps I'm lucky to be stubborn enough to withstand the weight of that constant suggestion - so in the end I'm more worried about falsely accusing those people than I am of wasting my time arguing with a troll. Perhaps I'm just trying to follow the guideline my doctors seem to have misunderstood: First, do no harm.

I think this a fantastic couple of paragraphs.

I also think the advice from Alice is good advice to if you are considering handing out personal details, like addresses and phone numbers.

Otherwise i think trust and open debates is that which we should strive for.

My motto is, I trust evryone until they give me reasons not to. i might get shafted afew times, but generally it means I am free to enjoy our ineractions and feel free to voice my fears and idea's.

Thank You Mark
 

Dolphin

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I just read this study.

One technical point: I find it a bit odd that they who they analyse as having "comorbid" psychiatric disorders are the people who had them ever (lifetime).
I think a more interesting analysis or at least as interesting would be to look at those who had them at the time of initial assessment. The text is a bit odd as it gives the impression that there is a bigger reduction in the rate of psychiatric disorders over the two years than there actually is (from what I can see) - it uses the lifetime figure for some reason.
 

Annikki

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Using biochemistry to disprove the idea works too.

I think the silver bullet in debunking ME/CFS resulting from depression starts with research in other autoimmune diseases- like fibromylagia and interstitial cystitis.

Research has found that in those diseases tryptophan is broken down into kynurenine instead of serotonin.

Studies in fibromyalgia and interstitial cystitis have found that an abnormal indoleamine 2, 3 pathway exists in people with these autoimmune conditions.

IDO and fibromyalgia: http://informahealthcare.com/doi/abs/10.1300/J094v02n03_10


Some research into ME/CFS has looked into the IDO pathway as being related to depression in ME/CFS. The one study I found seems to want to put the cart before the horse and say the IDO induced depression causes CFS. I haven't found this idea in discussion about the IDO pathway in reference to other studies.

The good thing to know is that recently a method using infrared spectrometry has been developed to test for this abnormal tryptophan breakdown in autoimmune disease patients.

It was developed by a veterinary researcher working with both cats and humans to develop a blood test for interstitial cystitis (IC). Developing a test for IC which can be performed in a doctors office has been a big research goal in the IC community- its a crappy disease with a seven year wait before a diagnosis is made.

Maybe using the same blood test on CFS/ME people is an idea? :innocent1:
Here's some info:

Molecular Peaks

Infrared spectroscopy enables a scientist to determine the biochemical composition of blood according to where the molecules peak along the infrared spectrum. In this study, it was clear that blood samples from both humans and cats with interstitial cystitis showed the same molecular peaks.

The scientists then identified the chemical compositions of these molecular profiles and found that there was a minimum of 20% more tryptophan and kynurenine in the blood samples of the cats with IC than in the samples from the healthy cats. As tryptophan breaks down in the body, it becomes kynurenine. When levels of kynurenine are high, this suggests that tryptophan is being diverted away from its primary purpose of sending signals within the brain. The same testing method worked well in differentiating the human samples as coming from patients with IC, healthy patients, and patients suffering from other urological disorders.
Source:
http://www.fibromyalgia-symptoms.org/blood-marker-for-interstitial-cystitis.html

And this more technical article about this new blood test mentioned:
Its a powerful enough technique that we might even be able to identify subtle differences in patients with multiple diseases that exist in addition to, but that are unrelated to, the interstitial cystitis, he said.
http://researchnews.osu.edu/archive/icbiomarker.htm

I couldn't post this without mentioning that there is a serious link between the immune system and the IDO pathway. I will bury you in articles if I list them all. Here are a few for starters:

Relationship between interferon-gamma, indoleamine 2,3-dioxygenase, and tryptophan catabolism.
Taylor MW, Feng GS.
http://www.ncbi.nlm.nih.gov/pubmed/1907934

I include this because extracellular ATP is a big deal in interstitial cystitis- that and ATP seems to an ME/CFS culprit in a big way. If you look, dendrite development is altered by the ATP presence.

Thrombospondin and indoleamine 2,3 dioxygenase are major targets of extracellular ATP in human dendritic cells. Frdrick Marteu, Nathalie Suarez Gonzalez, David Communi, Michel Goldman, Jean-Marie Boeynaems, and Didler Communi. http://bloodjournal.hematologylibrar...0612/3860.full

This article states:
Extracellular adenosine triphosphate affects the maturation of human dendritic cells, mainly by inhibiting T-helper (Th 1) cytokines, promoting Th2 cytokines and modulating the expression of costimulatory molecules. In this study we report that adenosine triphosphate can induce immunosuppression through its own action on DCs, defining a new role for extracellular nucleotides. Microarray analysis of ATP-stimulated human DCs revealed an inter alia a drastic up-regulation of 2 genes encoding mediators involved in immunosuppression: thrombospondin-1 and indoleamine.."
 

heapsreal

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Is there any current info on why cfsers react so poorly to ssri's/snri's which is also my experience but dont have problems with tricyclic's or supplements with 5htp and tryptophan but have also react poorly to st johns worts similar to ssir's?

In reguards to antidepressants, im more interested in there cognitive improvements rather then mood effects. I also get good cognitive and mood improvements with the pain killer tramadol which also effects serotonin and noradrenaline, maybe the pain killing effects help as i consider brain fog a more chronic mild form of a headache.

when it comes to neurology there is so many things that can effect it also like hormones as well as neurotransmitters like serotonin ,noradrenaline and dopamine.
 
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Hey Heapsreal,

I am very sensitive to ssri's as well, although I do get benefits from 1/4 a starter dosage of the ssri citalopram (5mg). Through my readings this is due to people with cfs having low dopamine (and usually high serotonin). SSRI's lower dopamine, so when dopamine crosses a certain threshold the brain/nervous system kind of freaks out. There really is no legitimate research on ssri sensitivity, and I presume this is due to its relationships with *ding* *ding* brain inflammation (encephalopathy) and the viruses that cause it. Brain inflammation would be the route through which dopamine is lowered, as dopamine is in and of itself an inflammatory substance, so an already ailing brain will reduce dopamine. This is why I think "depression" is purely an immunological state, yet psychological factors can obviously influence the precipitation of depression.

On a side note, I have some tramadol a psych prescribed. How is it for depression? I have depression as part of my cfs/me, and I don't get much help from drugs because I can only take tiny amounts of them.
 

Dolphin

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Thanks Annikki - great to have somebody knowledgeable of developments in other fields.

Is there any current info on why cfsers react so poorly to ssri's/snri's which is also my experience but dont have problems with tricyclic's or supplements with 5htp and tryptophan but have also react poorly to st johns worts similar to ssir's?

In reguards to antidepressants, im more interested in there cognitive improvements rather then mood effects. I also get good cognitive and mood improvements with the pain killer tramadol which also effects serotonin and noradrenaline, maybe the pain killing effects help as i consider brain fog a more chronic mild form of a headache.

when it comes to neurology there is so many things that can effect it also like hormones as well as neurotransmitters like serotonin ,noradrenaline and dopamine.
You might find this study of interest:
Heterogeneity of serum tryptophan concentration and availability to the brain in patients with the chronic fatigue syndrome
From the discussion section:

"If the present results are confirmed, our proposals should have important
implications for the pharmacotherapy of the CFS. Serotonin- modifying and other antidepressants are prescribed to CFS patients to treat depression (if present), pain and/or fatigue. However, CFS patients with serotonin excess should not be exposed to, and are unlikely to benefit from, serotonin-modifying antidepressants, particularly selective serotonin-re-uptake inhibitors (SSRIs), to avoid a potential excessive serotonin hyperactivity. Similarly, in view of the well known TrpSSRI interaction, the latter should not be prescribed to CFS patients with high Trp levels or increased availability to the brain. By contrast, as suggested by a meta-analysis of previous pharmacological trials (OMalley et al., 1999) and a survey of psychiatrists (Hickie et al., 1999), tricyclic antidepressants have a greater likelihood of efficacy than SSRIs, are
preferred by patients with chronic pain, and have superior antinociceptive properties in fibromyalgia (McQuay et al., 1996). Also, our clinical impression suggests that tricyclic antidepressants improve sleep disturbances in, and are better tolerated than SSRIs by, CFS patients.

A high level of brain serotonin may also be important in relation to other therapies, which influence this indolylamine, such as exercise and diet. Exercise is a recognized therapy of the CFS (McCully et al., 1996), but it is also known to increase serum [free Trp] and the [free Trp]/[CAA] ratio in normal subjects (Newsholme et al., 1991) by a mechanism involving NEFA-mediated release of serum albumin-bound Trp. In CFS patients, however, exercise fails to increase Trp availability to the brain (Castell et al.,
1999). In this latter study, only one exercise session was conducted, and it is therefore important to establish if a repeated exercise programme in CFS patients is associated with normalization of the above Trp response and whether such a potential normalization is related to, or indeed predictive of, therapy outcome. Food can also have profound effects on Trp disposition, with carbohydrate increasing (Madras et al., 1973), and protein decreasing (Mller, 1985), brain [Trp] and hence serotonin synthesis and turnover. If our results are confirmed, CFS patients with excess serotonin could be advised to avoid eating carbohydrate-rich foods and targeted to adjunctive
nutritional strategies aimed at reducing their high central serotonin levels.

The present results suggest that further research on the serotonin status of patients with the CFS should yield important information for the appropriate management of, and advice and ultimately a better service provision to sufferers from, this condition, in accord with the aims of recent recommendations (Clark et al., 2002)."
I know one PWME who had (yeuck!) overflow diarrhoea. She was taken into hospital and they did all sorts of tests on her bowel. Eventually when she stopped taking an SSRI it all stopped - so presumably what she had was serotonin excess.
 

Annikki

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You are welcome Dolphin. These are all biological diseases and have nothing to do with psychiatry.

All autoimmune diseases are co-morbid and have physical traits. Solving the puzzle for ME and fibro, IC, MS, Lyme and more is an interdependent effort. So is fighting the Wessely school through establishing the reality of our suffering is an interdependent effort. The biological correlations of very physical traits in all these diseases offer clues to their cause.

Wessely too, has also placed most all of them in his sights. Very interesting. The more I do research, the more amazing things I find. I'll keep you posted. FYI, there is no biological test for depression, showing the absurdity using depression as some marker for CFS/ME. Psychiatry is subjective, ensuring that windbags like Wessely can say pretty much what they want.
 

heapsreal

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Me too.. I am also wondering about the experiences with the MAOIs.
Interesting although MAOIs do have alot of side effects and certain foods have to be avoided like cheese etc but from what i have read are very good for resistant depression, not sure on energy cognitive stuff. Moclobemide is a reversible MAOI which has alot lower side effect profile then other MAOIs and tyramine foods like cheese dont have to be avoided. I remember reading an old study where it helped with energy levels in cfs. I havent had any personal experience with moclobemide and have forgot all about it actually, could be something i might consider looking into again. Because this drug has a short half life it is dosed twice daily for depression, so a short half life could work well for someone like me with sleep problems by dosing only in the morning when waking and not taking the night time dose to avoid sleep problems???

Interested to hear if anyone has used moclobemide.

cheers!!!
 

Ema

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Did you ever try this or hear from anyone who has used it before? I am curious as well to know if it might be worth a shot. Thanks, Ema
 

taniaaust1

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I'd like to see a psych study done on the percent of us who's state has worsened, either mentally or physically, due to others disbelief (including disbelief of doctors) and due to the negative attitudes towards us.

That study could be a shocker in its results.
 
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Hi Tania, a few weeks/month ago, there was a thread on an excellent masters thesis reviewing all the literature on the social aspects of CFS (with a local study in South Africa) including the aspect of stigma. I'll have a look if you can't find it.
 

Nielk

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I would think (no cited studies to prove this)that many patients with ME/CFS, especially the severely affected, would develop situational depression. When and if these patients would be cured of their ME/CFS, the depression would just disappear without any treatment.
I take myself as an example. I did not suffer from depression before I became ill. I do suffer now from depression from time to time but, noticed a direct correlation with the way I am feeling physically and how it leaves me limited and isolated because I am house/bedbound.
I know that when I have some better days and I can function partially, my mood is fine. When I'm in a deep crash and can't move from my bed for weeks, I find that I get very depressed. It just makes sense. the physical limiting illness is the cause of the depression. In the beginning, when my internist tried to treat me with antidepressants, it didn't work at all. As a matter of fact, it made me worse, much worse.
 

Vitalic

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I would think (no cited studies to prove this)that many patients with ME/CFS, especially the severely affected, would develop situational depression. When and if these patients would be cured of their ME/CFS, the depression would just disappear without any treatment.
I take myself as an example. I did not suffer from depression before I became ill. I do suffer now from depression from time to time but, noticed a direct correlation with the way I am feeling physically and how it leaves me limited and isolated because I am house/bedbound.
I know that when I have some better days and I can function partially, my mood is fine. When I'm in a deep crash and can't move from my bed for weeks, I find that I get very depressed. It just makes sense. the physical limiting illness is the cause of the depression. In the beginning, when my internist tried to treat me with antidepressants, it didn't work at all. As a matter of fact, it made me worse, much worse.
This mirrors my experience 100%. I call it logical depression, it would be unnatural not to be depressed in that situation, just like it would be unnatural for a parent not to grieve the loss of their child for example. Trying to correct a logical reaction is non-sensical, if the depression was disproportionate in severity however, then it might be something you would want to treat.