Are endogenous depression and cfs close relatives?

[Richie]

In that case, why do you keep focusing on vague similarities and ignoring the many distinctive differences?

Which similarities are vague?
Which have I concentrated on?
The differences are largely agreed,it is the similarities or possibel overlaps and common roots athat are at issue.

 

[Mij]

@Richie post #21 defines the major differences, pointing out that NK killer cells are also found in some depressive disorders (including many other diseases) is focusing on vague similarities.

 

[Valentijn]

It is absolutely with the stigma, people get defensive, because they think CFS is a serious physical illness and not a "mental" one like depression. Like "It's not all in my head, I'm seriously ill, bla bla" well that's the misunderstanding right there, endogenous depression is just as physical as CFS and has many similar biomarkers, genetic, immune, neurological, mitochondrial.

Who has said that here, ever? Depression is a serious illness, and people who have it deserve compassion and support. And yes, it has some associated biomarkers - which are typically opposite to the ones found in ME/SEID. Hence they likely aren't related, and depression research is unlikely to be particularly relevant to ME/SEID, especially when we take into account the completely different sets of symptoms.

In related news, I'm fed up with being labeled as "stigmatizing" depression, simply because I do not agree that there are similarities between ME/SEID and depression.

CFS patients can benefit from advance in research of depresion and vice versa as it is a multisystemic illness and absolutely not homogenous. so interdisciplinary research is always beneficial.

Yes, there's a chance that such research might be beneficial. But patients aren't interested in it because 1) it's already been done to death without finding anything to suggest a connection, and 2) we have very limited funding for ME/SEID and want it focused squarely on the disease - not on peripheral issues and tenuous connections. If funding suddenly becomes unlimited, I'm happy enough to see it on the bottom of the list of things to look into.

While ME/SEID may be poorly understood, it's pretty well understood that it's vastly different from depression in every meaningful manner which has been explored thus far. Maybe there's a one in a million chance that the two will have a significant association (beyond the situational depression caused by chronic illness in general), but to promote that as anything other than a vague and unsupported hypothesis is absurd.

 

[amaru7]

to me a lot of those symptoms don't look related to depression but are just common ME/CFS symptoms - HPA dysfunction, interupted sleep, heavy palpitations, pain, fatigue, musle twitches, etc. I get all of those, it's just part of the ME/CFS as far as I'm concerned. I never really got any of those symptoms when i was depressed

depression is not a homogenous disease, so you might not have had these issues in your depression, but some do

Depression and -

HPA dysfunction

Studies over the last 40 years have demonstrated that hyperactivity of the hypothalamic-pituitary-adrenal axis is one of the most consistent biological findings in major depression psychiatry, but the mechanisms underlying this abnormality are still unclear.

http://www.ncbi.nlm.nih.gov/pubmed/18675469

The HPA axis is involved in the neurobiology of mood disorders and functional illnesses, including anxiety disorder, bipolar disorder, insomnia, posttraumatic stress disorder, borderline personality disorder, ADHD, major depressive disorder, burnout, chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, and alcoholism.[6]

http://en.wikipedia.org/wiki/Hypothalamic–pituitary–adrenal_axis

It has been well-established for nearly 40 years that depression is associated with dysfunction of the hypothalamic-pituitary-adrenal (HPA) axis. This manifests itself in two ways; activation of the HPA axis and blunting of the normal diurnal cortisol profiles.

http://www.diapedia.org/associated-disorders/depression-the-role-of-hpa-abnormalities

An impaired stress-hormone regulation plays an important role for the development of depression.

http://www.mpg.de/4752810/Antidepressive_Behandlung

Interrupted sleep

If you've been diagnosed with clinical depression, you may be having trouble getting to sleep or staying asleep. There's a reason for that. There is a definite link between lack of sleep and depression. In fact, one of the common signs of depression is insomnia or an inability to fall and stay asleep.

http://www.webmd.com/depression/guide/depression-sleep-disorder

Disrupted sleep is so commonly a symptom of depression that some of the first things doctors look for in diagnosing depression are insomnia and excessive sleeping. Now, however, scientists have observed for the first time a dysfunctional body clock in the brains of people with depression.

http://www.livescience.com/31961-brain-clock-disrupted-depression.html

Sleep disorders as core symptoms of depression

Links between sleep and depression are strong.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181883/

Depression and Racing/Palpitating Heart

Depression causes many alarming symptoms. An oversensitive nervous system, flooded with negative adrenalin, can cause missed heart beats, palpitating or racing heart, even sharp chest pains.

http://cornerstonethefoundation.blogspot.de/2009/11/depression-and-racingpalpitating-heart.html

Is there a link between pain and depression? Can depression cause physical pain?

Answers from Daniel K. Hall-Flavin, M.D.

Pain and depression are closely related. Depression can cause pain — and pain can cause depression. Sometimes pain and depression create a vicious cycle in which pain worsens symptoms of depression, and then the resulting depression worsens feelings of pain.

http://www.mayoclinic.org/diseases-...pert-answers/pain-and-depression/faq-20057823

http://www.webmd.com/depression/physical-symptoms

 

[amaru7]

I agree. Depression and ME/CFS are separate diseases but I get the impression most here have not seen people with very severe depression who are in a critical condition - catatonic, unable to drink or eat, unaware of what's going on around them, dying. Severe depression can be every bit as severe as severe ME/CFS and there is no reason to think it's anything other than an organic illness. To say there is no overlap or only mild overlap in symptomatology is not accurate.

Couldn't have said that better myself, cheers

It's pointless to suggest an overlap unless there is a shared mechanism though I think.
We would have ME and the MS overlap or ME and the RA overlap based on shared symptoms. It would be a big list.

There is a shared mechanism with ME and MS though and ME patients can very much benefit from Dr. Terry Wahls research, who cured herself from progressive MS. The book is called "Minding my mitochondria" http://www.amazon.com/Minding-Mitochondria-2nd-Edition-progressive/dp/0982175086

ME is not depression!

Who said it is?

Both are two complete distinct entities. The symptom patterns are remarkably different and quite easy to distinguish

There is some overlap you go on to say, so no to complete distinct entities we agree. Actually most diseases are related in one way or another

Of course there is some overlap. Depressed patients can develop severe fatigue and sleep disruption. But this doesn't mean anything. MS patients can develop the same, but do we have therefore MS? No!! People with autoimmune hepatitis suffer from crushing fatigue. Do we have that, because of an overlap in one core symptom? No!! I could go on and on...

We dont have MS or whatever, but why not think out the box and look at their research?

 

[amaru7]

All of these diseases may end up overlapping or have the same root cause but we don't know enough yet.

This is humble knowledgable, and the basis on what I'm trying to do here.

Again, a serotonin (or receptor activity) deficiency hasn't been noted in CFS, in fact quite the opposite.

I don't have so many sources like you did, but according to the clinical experience of the CFS hospital I went to it is very well noted in CFS as the professor told me.

From my understanding is that pain and depression share the same neuro pathway? It would be interesting to know if people who also have FM are the ones experiencing depression? I've known 3 people personally with FM and all 3 suffer from depression as well.

You're right, the links I posted above suggest this.

By what professionals and by what criteria?

Not sure, but by the Berlin clinic charité and Prof. Scheibenbogen

Is bartonella minor? Whch immune tests did you have?

I did these at the center for immunology in Berlin, I'm not into that research, in the letter it just stated "no immune dysfunction" so I left it there. It's like 2-3pages of immunological values

 

[Undisclosed]

This thread is now open. Please avoid personal attacks or you will be banned from the thread.

To make things a bit easier, we have changed the title of the thread to make it a bit more representative of the discussion.

Thank you.

 

[Richie]

@Richie post #21 defines the major differences, pointing out that NK killer cells are also found in some depressive disorders (including many other diseases) is focusing on vague similarities.

I agree about post 21. A good summary.
Depression is not ME nor is it integral to ME but they co-occur and are confused by doctors. The co-occur for a variety of reasons incl of course reactive, curcumstantial.
I see no reason why this topic should be off limits, any more than it would be on a PD or Lyme or MS board. Perhaps you agree.

As to NK cells and "vagueness"
Poor NK cell function is found in both (and in others). NK cell function has been touted as a marker (as has poor mt function). A depressive with low NK function might acquire infections as do some ME people and look like ME to a primary care provider. Do we want these people in our research groups?There is confusion among doctors, otherwise we would not have to bother at all with the issue of confusion. There are cynics who are out to strike down the legitimacy of the whole condition and delight in the discovery of biomarkers which are then found not to be such, when further research might find an important difference between low NK function among depressives and low NK function among ME people (they are already distinguishing mito probs in CFS from FM and some depressives), I would not call this "vague" and if you meant "trivial", I would not call it that either.

 

[Mij]

@Richie perhaps the better term is non-specific. We all come from our own experiences with this illness and if we focus on sleep problems, fatigue and serotonin depletion (which you mention is a big factor for you) then I feel we are moving in the wrong direction. It does not benefit us and many doctors would be glad to just write us a script for antidepressants..

I've been sick for 24years and fatigue (sleep issues) has never been a primary problem for me, I have the inability to produce energy on demand and PEM, this is what keeps me disabled. This is why I am glad we are moving forward and focusing research towards our distinctive differences

I am no longer stuck on the name M.E either. The symptoms of PEM are mandatory to our illness and if you don't have this then you can't be diagnosed with SEID.

 

[Richie]

@Richie perhaps the better term is non-specific. We all come from our own experiences with this illness and if we focus on sleep problems, fatigue and serotonin depletion (which you mention is a big factor for you) then I feel we are moving in the wrong direction. It does not benefit us and many doctors would be glad to just write us a script for antidepressants..

I've been sick for 24years and fatigue (sleep issues) has never been a primary problem for me, I have the inability to produce energy on demand and PEM, this is what keeps me disabled. This is why I am glad we are moving forward and focusing research towards our distinctive differences

I am no longer stuck on the name M.E either. The symptoms of PEM are mandatory to our illness and if you don't have this then you can't be diagnosed with SEID.

Mij
Basically everyone I know with an ME diagnosis complains of post exertional malaise to one degree or another. None of them complain mainly of depression.

If you want to use the term SEID for a specific type of PEM and to claim that this is a specific condition, or a symptom found in several conditions but worthy of investigation and treatment in itself, I won't argue - as long as the name ME is not then equated with a SEID and sequestered for one type of PEM shown on one test.

As to current ME diagnosed patients the following questions strike me:-
1) Is self reported PEM unique to them? Is at least one sort of objectively found PEM unique to one subgroup of them?
2) Is self reported PEM universal among them? ( I think so)
3) How sensitive and specific is any objective diagnosis of PEM? If diagnosed on delayed VO2 Max, what if PEM is recordable after say 6 hrs or 12 hrs but no longer after 2 days? Is that still PEM? (Back to semantics???!!!??, but still a valid question)
4) What of sufferers diagnosed with ME who do not show problems on VO2 max but are symptomatic for PEM?
5) Is it best considered a condition in itself or best as evidence of other underlying problems which may be various.

I am not asking you to answer, just saying that these imo are worthwhile questions.

What is undisputably good about VO2 Max confirmations of PEM, is that they show organic abnormality among some ME diagnosed and can be added to the stock of data showing bodily dysfunction among ME diagnosed.

Fatigue is massive among ME/CFS patients. That is just the truth. As are sleep problems. I am by no means alone in this. Serotonin depletion is another matter, but NB, my discussion of serotonin depletion is consistent with ideas of active infection, which the psychologisers are against. Having, for over 29 years suffered with ME consistent symptoms (with variations and fluctuations), I certainly do not wish to have any sleep and fatigue problems subsumed under "depression", with antidepressants and talk being the job lot of therapies. Perhaps I am mistaken but it seems to me that some, who most vociferously (and correctly) advocate the drawing of clear distinctions between ME and depression as conditions, seem, albeit tacitly, to be ready to push people like me down the "you've really got depression" route, despite our ME consistent symptoms being our primary problem. I may be wrong but that is how it seems and it is highly ironic.

According to my lab results I also have problems making energy in a variety of ways and for a variety of reasons. I could tell you more or less exactly over 30 years what type of PEM symptoms I have had - immediate, delayed by several minutes, encompassing days, more short-lived. All imo best described by the term PEM. No better term imo. I am not the "I feel like I have flu" type of ME patient. But I only had flu once when well. So my PEM may be less "fluey" than others', because of my genotype perhaps, and more like "lie down now" physical exhaustion. But, nevertheless imo PEM. None of them felt like depression.

We may have much in common. I have not done 2 day V02 max for PEM, but 50% of those tested on one trial,who had a diagnosis of ME/CFS did not either. Is this test sensitive enough?. Does it reliably test PEM or only by circular definition, that those who have problems on this test have "real" PEM and the others don't, despite having long standing ME/CFS consistent symptoms with definite post exertional exacerbation of symptoms?

Maybe some people have central PEM and some peripheral muscle based. Maybe some have heart involvement in a way others don't. All might still fit the classic ME/CFS of CC/ICC but be different in crucial ways. It all needs sorting out thoroughly.

I am sorry you have been so ill for so long and I also hope for proper investigation, proper research, proper diagnosis and proper drawing of distinctions between patients on the basis of such findings. Then we will have appropriate nomenclature too (I hope).
I hope you find what helps you.

 

[Valentijn]

If you want to use the term SEID for a specific type of PEM, which you have, and to claim that this is a specific condition, or a symptom found in several conditions but worthy of investigation and treatment in itself, I won't argue - as long as the name ME is not sequestered for that group alone . . . .

PEM is specifically described by the criteria which require it for diagnoses. If someone doesn't have a symptom which is mandatory for a disease, then they don't have that disease. At most they might be said to have an atypical form.

If you know of an ME criteria which doesn't require PEM, then someone without PEM could be diagnosed with that. But they'd be talking about a different illness than everyone else here when they refer to ME or SEID.

1) How is such PEM diagnosed objectively?

It doesn't have to be. It's diagnosed subjectively based on the patient reporting immune and neurological symptoms triggered in response to exertion, typically hitting about 24 hours after that exertion.

2) If on delayed VO2 Max, what if PEM is recordable after say 6 hrs or 12 hrs but no longer after 2 days? Is that still PEM?

Probably - actual onset and duration varies from patient to patient, and even from crash to crash. But the main point is that it is delayed. Symptoms starting during exertion, or very soon after, are exercise intolerance, but probably not PEM, especially without the immune and/or neurological symptom flair. Many people do not appreciate this distinction, and end up diagnosing ME/CFS when it's not appropriate.

3) What of sufferers diagnosed with ME who do not show problems on VO2 max but are symptomatic for PEM?

The two-day CPET is a relatively new area of research regarding ME/SEID, so it's possible that it would miss some actual PEM. But I'd think it's more likely that someone in that situation is confusing exercise intolerance or delayed-onset muscle soreness with PEM. This happens most often when the emphasis is placed upon fatigue, and immune and neurological symptoms are ignored or downplayed.

4) If it is a symptom found in numerous conditions e.g. as a consequence of different active infections, is it better seen as such or as a condition in itself or as organic proof of underlying e.g. infection?

A symptom is just a symptom. I would be difficult to see it as a disease unto itself when everyone who has it also has numerous other symptoms in common. But it's a symptom which is seen in no other disease beside GWS - which is probably just ME/SEID with a specific onset, since it has the same symptoms.

Fatigue is massive among ME/CFS patients. That is just the truth.

I disagree. I usually don't feel "fatigued". I often feel sick during PEM, or light-headed due to OI, but I don't get this general non-specific fatigue. My symptoms are accounted for by more specific descriptions.

Perhaps I am mistaken but it seems to me that some, who most vociferously (and correctly) advocate the drawing of clear diistinctions between ME and depression as conditions, seem, albeit tacitly, to be ready to push people like me down the "you've really got depression" route, despite our ME consistent symptoms being our primary problem. I may be wrong but that is how it seems and it is highly ironic.

Not in the slightest - there are many alternatives to having ME or depression. The problem is that sloppy diagnosis convinces some patients that they have ME despite not fulfilling the criteria, and those patients are then denied proper diagnostic tests and treatment. It also gets rather awkward when misdiagnosed patients with any physical or psychological illness claim to be ME patients who are helped by things which are useless or harmful to ME patients.

And please understand that when someone equates ME with fatigue and sleep problems, it feels like they're trying to redefine our disease and deny our reality. Fortunately the disease criteria are pretty clear in that respect, unless using Oxford or Fukuda, both of which are pretty whole-heartedly rejected by the ME community and ME specialists.

According to my lab results I also have problems making energy in a variety of ways and for a variety of reasons.

There are no mitochondrial/ATP type lab results which can be used to diagnose ME/SEID at this point. They certainly do not substitute for the actual presence of PEM.

I could tell you more or less exactly over 30 years what type of PEM symptoms I have had - immediate, delayed by several minutes, encompassing days, more short-lived. All imo best described by the term PEM. No better term imo. I am not the "I feel like I have flu" type of ME patient. But I only had flu once when well. So my PEM may be less "fluey" than others', because of my genotype perhaps, and more like "lie down now" physical exhaustion. But, nevertheless imo PEM. None of them felt like depression.

This does not sound at all like PEM - it should not be occurring mere minutes after exertion, and flu-ish symptoms are part of PEM. If someone's reaction to exertion doesn't have the described PEM delay, nor the described PEM symptoms, it seems like a poor choice to label that reaction as PEM.

Additionally, the "lie down now" experience is a common part of orthostatic intolerance (OI), which does often feature exercise intolerance. ME patients usually have OI in addition to PEM, but it's pretty distinct from PEM, though there can be some confusion because the exertion (sometimes just standing up) can trigger OI immediately, then PEM later. OI is also present in many other diseases, which can be a good reason to continue investigating the diagnosis. And it's usually very treatable.

We may have much in common. I have not done 2 day V02 max for PEM, but 50% of those tested on one trial,who had a diagnosis of ME/CFS did not either. Is this test sensitive enough?. Does it reliably test PEM or only by circular definition, that those who have problems on this test have "real" PEM and the others don't, despite having long standing ME/CFS consistent symptoms with definite post exertional exacerbation of symptoms?

Maybe some people have central PEM and some peripheral muscle based. Maybe some have heart involvement in a way others don't. All might still fit the classic ME/CFS of CC/ICC but be different in crucial ways. It all needs sorting out thoroughly.

Thus far it seems to select for those who have typical delayed, flu-like PEM. It's circular to the extent that that is the symptom which these patients report, and which is required in the disease definition. Some people have it, some don't. Those who do have PEM have a lot more in common with each other than they do with people who don't have PEM, so it makes sense to group them under a disease name and criteria - it is certainly better than making the definition so broad that people with very different illnesses are included.

It's not a matter of being meanies and excluding people who don't fit in. It's a matter of defining a disease and finding common pathology and treatments. If the disease includes everyone with any exercise intolerance, there will be many different pathologies and treatments. Some people with exercise intolerance benefit from gentle exercise, whereas others are made incredibly sick from any exertion. Nothing is gained by combining these groups together, and much is lost.

 

[Marco]

I'm not intending to join in this discussion as such and my own view is that depression is a symptom - no more and no less.

What I wanted to say is that I had severe depression for many years after onset which disappeared when my physical symptoms worsened after 12 years. It just occured to me recently (don't know why it took so long) But when I had depression (the symptom) it was actually relieved by bed rest as is my current PEM. I'd go to bed suicidally depressed and after a few hours sleep wake up feeling pretty much over it.

I don't recall ever coming across any discussions of depression relieved by bed rest.

 

[Mij]

Interesting, PEM for me is not relieved by sleep.

 

[Richie]

Valentijn
Your assertions on PEM are not in accord with the PENE of ICC. If we differ on this fundamental level, there is little point in arguing about whether I have PEM.
Here is http://www.meassociation.org.uk/201...ia-journal-of-internal-medicine-20-july-2011/
PENE section.
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.

2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms

3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.

4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.

5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

I would agree that the above description of PENE is necessary for a diagnosis of ME/CFS , but your definition is much narrower.
I am sorry you feel sick in PEM.
I agree fatigue and insomnia are not ME. I make no such equation, and I trust, as you have said that you do not intend to push people out of ME into inapprorpriate alternatives, that you make no equation of my ME with fatigue and insomnia.
According to my lab results I also have problems making energy in a variety of ways and for a variety of reasons.This is what I said in reply to Mij, who possibly thought that was their problem but not mine. I grant realtion to PEM is uncertain.

Sorry, but you cannot exclude me from ME on ICC and your presentation of PEM is different from ICC PENE.

 

[Richie]

Interesting, PEM for me is not relieved by sleep.

Classic symptom, sadly.

 

[Richie]

I'm not intending to join in this discussion as such and my own view is that depression is a symptom - no more and no less.

What I wanted to say is that I had severe depression for many years after onset which disappeared when my physical symptoms worsened after 12 years. It just occured to me recently (don't know why it took so long) But when I had depression (the symptom) it was actually relieved by bed rest as is my current PEM. I'd go to bed suicidally depressed and after a few hours sleep wake up feeling pretty much over it.

I don't recall ever coming across any discussions of depression relieved by bed rest.

Was that at any time or nighttime bedrest, or with or without sleep?

 

[Valentijn]

2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms

That's an "and", not an or. You've said you don't have the flu-like symptoms.

3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.

Yes, I think they got this wrong, and are conflating the more general exercise intolerance with the specific PEM - or they're understanding that some patients will conflate they two. Which isn't a problem when the patient has both.

Regardless, PEM requires flu-like symptoms.

 

[Mij]

From my own experience is that the immediate occurrence (within the next hour) of what felt very much like PEM was actually an underlying viral or immuno activation of some sort (seasonal allergies etc). I haven't experienced this very often though, maybe 3 times in 24 years. Maybe it was PEM, not sure. I don't think for me it's exercise intolerance.

My real PEM starts 16-18 hrs later and will continue for longer period depending on how much I overdid. If I stay within my boundaries I don't get PEM, I haven't experience it for several months.

 

[Richie]

That's an "and", not an or. You've said you don't have the flu-like symptoms.

Yes, I think they got this wrong, and are conflating the more general exercise intolerance with the specific PEM - or they're understanding that some patients will conflate they two. Which isn't a problem when the patient has both.

Regardless, PEM requires flu-like symptoms.

Given there is an e.g. before the lot your point is moot. You may object mine is also on the same grounds.

My reading is entirely acceptable.
Definition of "flu like" is also up for grabs.
You disagree with ICC and cannot claim currently that ICC supports your view. They "got it wrong" twice as they use the term "rapidly" so they must be pretty convinced.
You assert "flu like" symptoms are necessary. The text does not back this unless a comma always means "and" rather than "or". Unless you can point to further elucidations.

 

[Richie]

From my own experience is that the immediate occurrence (within the next hour) of what felt very much like PEM was actually an underlying viral or immuno activation of some sort (seasonal allergies etc). I haven't experienced this very often though, maybe 3 times in 24 years. Maybe it was PEM, not sure. I don't think for me it's exercise intolerance.

My real PEM starts 16-18 hrs later and will continue for longer period depending on how much I overdid. If I stay within my boundaries I don't get PEM, I haven't experience it for several months.

Mij
I have wondered if in some cases immune activation post exercise mimics other PEM, or indeed if measured would be a form of biological VO2X recordable as PEM.