Depression Poll

[JaimeS]

Is it possible that they gave you a blank look because they don't recognise or use the term ME in the US?

Yes - but using 'chronic fatigue' is not, I feel, entirely accurate. I have the frontal lobe white matter lesions, the post-exertional recovery issues, POTS, and other signs/symptoms that appear to be the province of ME alone, and are not considered associated with the entity 'chronic fatigue' at all. The Fukuda criteria seems to be what people think of here when I use the phrase.

-J

 

[Mij]

Yes - but using 'chronic fatigue' is not, I feel, entirely accurate. I have the frontal lobe white matter lesions, the post-exertional recovery issues, POTS, and other signs/symptoms that appear to be the province of ME alone, and are not considered associated with the entity 'chronic fatigue' at all. The Fukuda criteria seems to be what people think of here when I use the phrase.

-J

Sorry, what I meant to say was that they might recognize Chronic Fatigue Syndrome as a possible neurological disease though? They use this term in the US instead of ME . I agree saying you have chronic fatigue would not describe your illness but some doctors might be more familiar with the term CFS.

 

[MeSci]

Sorry, what I meant to say was that they might recognize Chronic Fatigue Syndrome as a possible neurological disease though? They use this term in the US instead of ME . I agree saying you have chronic fatigue would not describe your illness but some doctors might be more familiar with the term CFS.

Yes - chronic fatigue is symptom of numerous illnesses, whereas chronic fatigue syndrome is a diagnosis, albeit a wastebasket one. A lot of doctors regard ME and CFS as synonymous, and a lot of docs refuse to recognise ME, so we have to make do with a diagnosis of CFS.

The media have a nasty habit of using 'chronic fatigue' when they may (or may not) be talking about ME or CFS (or vice versa), and unfortunately it is often in the context of quackish 'cures' like Lightning Process, so that we then have to cope with friends, relatives and acquaintances telling us that we can get cured that way.

 

[MeSci]

Just want to draw people's attention to a new poll arising from this one and the Hornig/Lipkin findings. Hope you can come on over and vote!

 

[lift]

I'm actually shocked at the poll results. I was expecting 80%+ to vote Yes.

 

[MeSci]

I'm actually shocked at the poll results. I was expecting 80%+ to vote Yes.

I wasn't. We are a cheery lot on the whole!

 

[Jon_Tradicionali]

I wasn't. We are a cheery lot on the whole!

I too was surprised.

I'd say we are determined.
I wouldn't say cheery though.

Maybe I'm just speaking for myself.
Not sure.

Edit: Depression is often cited as comorbid with CFS.

 

[A.B.]

An anecdote: I've looked at forums for people frequented by patients with a diagnosis of depression and there is clearly a difference in the atmosphere.

 

[MeSci]

I too was surprised.

I'd say we are determined.
I wouldn't say cheery though.

Maybe I'm just speaking for myself.
Not sure.

Edit: Depression is often cited as comorbid with CFS.

Clearly there is wide variation, and also studies may use poor criteria for defining depression (see earlier posts). Having had depression, I am very aware of whether I am depressed or not. I think that when one is depressed, it can be hard to imagine feeling any other way. It colours everything.

 

[Jon_Tradicionali]

Clearly there is wide variation, and also studies may use poor criteria for defining depression (see earlier posts). Having had depression, I am very aware of whether I am depressed or not. I think that when one is depressed, it can be hard to imagine feeling any other way. It colours everything.

Yes there does seem to be no specific pattern between depression and CFS.

Still surprising, considering the 25+ symptoms and lack of research/treatments.

Nevertheless, I've been subtly vocal regarding my own decade-long battle with depression of the worst kind, which is ongoing.

With something like depression, a vicious cycle ensues, and as you say, it is hard to imagine feeling any other way.

 

[dean]

Almost...almost everyone who is sick is depressed because of their illness. Not everyone, but most.
I know that for years I said I wasn't depressed with this illness. I was frightened of that stigma. I say stigma because when I was first diagnosed with CFS, all docs thought I was just mental and yes...that's a stigma because they treated me like I was crazy. I'm not scared of that "stigma" anymore. I know I'm sick. Docs know I'm sick. I've got blood work to prove it and yup, I'm depressed. It's a shame they started believing me in my 30's.

And I know there are so many lurking in the shadows that read these posts, rarely comment...they are depressed and I know this because they email me.
And let's not forget how many people end their lives because of this illness. They weren't happy when they went out, that's for sure.

Bravo for your courage. Every other group of people with chronic illness and dissablities have higher rates of depression and suicide than healthy counterparts. How is it as a group we are any different. Bravo for accepting your illness and " knowing" you are sick" and not being afraid to admit to having been seriously affected by it. I sure admit it. We are no different than other people sick with dissabilities...diabetes, MS, chronic kidney and heart disease, convulsive disorders, all sort of cancers etc etc

 

[Misfit Toy]

@dean I was very upset by this post. 70% of people with chronic illness saying they are not depressed and only 30% saying they are. I call, bullshit. People talk all the time ON HERE about how this is so hard, how they are so sick, how we need advocacy...don't tell me you aren't depressed. If you are so happy, or content, why are you on here reading these posts of illness? Posts of sadness and depression. Why are you so invested in a virtual reality of illness, confusion and never ending questions of symptoms, and how one is feeling awful...get out and be happy!!!

The last place I want to be when happy is on a forum of illness. I am out living my life. I am not on here.

I went to my therapist and told her about this thread. I told her my posts and how people were coming at me for saying it's crap that people aren't depressed. She sees mostly CFS/Lyme patients.

She said, "I don't know why they are saying that (it's a facade), but everyone that comes to me with CFS or Lyme is wickedly depressed or depressed in that this is impacting their life. Their lives have changed, they have been impacted. They may still be able to work, but they are depressed. They work and do nothing else, or their whole day revolves around their condition.. if you have just said, "To hell with it" and you are living in the confines of your home...one is depressed. It might not be a suicidal situation, but you can't be overjoyed with being indoors all of the time. Your life has changed. Many of those people are not being honest. I can't even tell you how many tell me they want to end their lives. Just this week I had to help 2 patients find a psychiatrist to get them on medicine due to the impact this illness is having on them."

YES. Yup. I would much rather be outdoors on this fairly nice day then be indoors, in my pajamas looking at bird videos on Youtube. I am laughing hysterically at these videos, but I would much rather be out walking, getting an ice cream and kissing a lovely man then doing what I am doing right now. And...seeing that someone ended their life has me down, but not suicidal.

I own my feelings. I don't care what anyone thinks. Yup, I am depressed, but I had a good day. I am not morose today. I had a great conversation with someone on here. We laughed....another like minded person on here.

And I will laugh and cook dinner and I will still be depressed because I want more. I want my life back.

If you are in the UK and saying you are not depressed because of how it is over there...how stigmatized folks with this condition are over there, I get it. But, if you are in the states and saying, yes..."I rarely get out, my finances suck, I have no help, but I am truly happy"....BS.

Even if you have come to accept your condition, you can't be thrilled and I think it does us all a disservice to say this to each other on here, of all places. To say you aren't depressed. A place where people should be able to come and talk of how this condition is impacting them. Look at what is happening, people. Saying you aren't depressed. People may start to not really want to admit what is going on and then fall off of the cliff. We need to be able to talk of how we are feeling so we can help others. This illness sucks, be real.

Look, we need to be honest with ourselves and each other and help each other.

Just the fact that people are trying so many different modalities and supplements shows they are depressed. Why? Because if they were truly happy with the way they felt, they wouldn't need to try and get better. They would be content with their current state of ill health and just "be."

 

[dean]

I assume it wasnt my post that was upsetting you...right :=}

again bravo. I was also particularly touched by the recent suicides of young people. To me suicide is something to learn from as a sign of a failure someplace, suffering not acknowledged, signs ignores, help not offered, someone not listening.

Depression is a symptom that dares not speak its name.....however that is changing for some of us. Good for you....

 

[Jon_Tradicionali]

@dean I was very upset by this post. 70% of people with chronic illness saying they are not depressed and only 30% saying they are. I call, bullshit. People talk all the time ON HERE about how this is so hard, how they are so sick, how we need advocacy...don't tell me you aren't depressed. If you are so happy, or content, why are you on here reading these posts of illness? Posts of sadness and depression. Why are you so invested in a virtual reality of illness, confusion and never ending questions of symptoms, and how one is feeling awful...get out and be happy!!!

The last place I want to be when happy is on a forum of illness. I am out living my life. I am not on here.

I went to my therapist and told her about this thread. I told her my posts and how people were coming at me for saying it's crap that people aren't depressed. She sees mostly CFS/Lyme patients.

She said, "I don't know why they are saying that (it's a facade), but everyone that comes to me with CFS or Lyme is wickedly depressed or depressed in that this is impacting their life. Their lives have changed, they have been impacted. They may still be able to work, but they are depressed. They work and do nothing else, or their whole day revolves around their condition.. if you have just said, "To hell with it" and you are living in the confines of your home...one is depressed. It might not be a suicidal situation, but you can't be overjoyed with being indoors all of the time. Your life has changed. Many of those people are not being honest. I can't even tell you how many tell me they want to end their lives. Just this week I had to help 2 patients find a psychiatrist to get them on medicine due to the impact this illness is having on them."

YES. Yup. I would much rather be outdoors on this fairly nice day then be indoors, in my pajamas looking at bird videos on Youtube. I am laughing hysterically at these videos, but I would much rather be out walking, getting an ice cream and kissing a lovely man then doing what I am doing right now. And...seeing that someone ended their life has me down, but not suicidal.

I own my feelings. I don't care what anyone thinks. Yup, I am depressed, but I had a good day. I am not morose today. I had a great conversation with someone on here. We laughed....another like minded person on here.

And I will laugh and cook dinner and I will still be depressed because I want more. I want my life back.

If you are in the UK and saying you are not depressed because of how it is over there...how stigmatized folks with this condition are over there, I get it. But, if you are in the states and saying, yes..."I rarely get out, my finances suck, I have no help, but I am truly happy"....BS.

Even if you have come to accept your condition, you can't be thrilled and I think it does us all a disservice to say this to each other on here, of all places. To say you aren't depressed. A place where people should be able to come and talk of how this condition is impacting them. Look at what is happening, people. Saying you aren't depressed. People may start to not really want to admit what is going on and then fall off of the cliff. We need to be able to talk of how we are feeling so we can help others. This illness sucks, be real.

Look, we need to be honest with ourselves and each other and help each other.

Just the fact that people are trying so many different modalities and supplements shows they are depressed. Why? Because if they were truly happy with the way they felt, they wouldn't need to try and get better. They would be content with their current state of ill health.

Thanks for having the energy to say what I was thinking!

 

[Misfit Toy]

You got it @Jon_Tradicionali ---we need to be real. I wish I could have talked to Beaver. Not that I have any power, or could have talked him into just hanging on. What a beautiful man and talented. Poor lad. This is so sad. We need to be honest and say...."yes, this illness has me down. You, too?" So sad.

People need to feel like they can be honest on here.

Honestly, I speak up. You like me...great. You don't....oh well. Not trying to win a popularity contest. Just being me.

@dean - when I was younger I was scared of telling the doctor my symptoms or that I have CFS...not anymore. I just go to a different doctor if he is on the fence. Where I am and I guess I have an advantage (good docs), in one way....I have other illnesses that have been deemed as being legitimate (in the medical professions eyes) so they listen. But honestly, all illness are scrutinized. Not just CFS. My other conditions are serious and even those docs don't want to deal with them because they are too hard and complicated. They want a quick fix. Dean, didn't you have a post on here? Where did it go? I guess we are supposed to shut up now? Note: dean's post was not removed--it is still here.

This is not contagious....we are not all going to commit suicide now. Gosh, if anything...I want to live more.

 

[SOC]

@dean I was very upset by this post. 70% of people with chronic illness saying they are not depressed and only 30% saying they are. I call, bullshit. People talk all the time ON HERE about how this is so hard, how they are so sick, how we need advocacy...don't tell me you aren't depressed.

I call bullshit back.

It is hard. We do need advocacy. That doesn't mean I have to be depressed about it. I'm not. Sometimes I'm angry. Sometimes I'm frustrated. But I'm not depressed.

Depression may be your response to difficult situations, but it isn't everyone's. We're not all the same.

If you are so happy, or content, why are you on here reading these posts of illness? Posts of sadness and depression. Why are you so invested in a virtual reality of illness, confusion and never ending questions of symptoms, and how one is feeling awful...get out and be happy!!!

There's a long distance between depressed and happy and content. My mood is mostly upbeat, but I'm not happy that my life is as limited as it is. I'm certainly not content with it. I'm fighting all the time. That doesn't mean I have to be depressed.

I am here reading about illness for a number of reasons. One is that I want to learn more about the illness so that I can improve my quality of life. Another is that I think it's important that patients stay on top of the political and advocacy issues if we are going to make progress with this illness. I also think that those of us with years of experience with this illness have a lot to learn from others about how to manage it and a lot to share with newbies to make their lives with this illness a little less difficult than ours has been. I'm not here because I'm depressed... I'm here for hope and education. Depression is not necessary for that.

The last place I want to be when happy is on a forum of illness. I am out living my life. I am not on here.

That's your choice. I think there's a lot of reason to be here even if one is happy.

I went to my therapist and told her about this thread. I told her my posts and how people were coming at me for saying it's crap that people aren't depressed. She sees mostly CFS/Lyme patients.

She said, "I don't know why they are saying that (it's a facade), but everyone that comes to me with CFS or Lyme is wickedly depressed or depressed in that this is impacting their life. Their lives have changed, they have been impacted. They may still be able to work, but they are depressed. They work and do nothing else, or their whole day revolves around their condition.. if you have just said, "To hell with it" and you are living in the confines of your home...one is depressed. It might not be a suicidal situation, but you can't be overjoyed with being indoors all of the time. Your life has changed. Many of those people are not being honest. I can't even tell you how many tell me they want to end their lives. Just this week I had to help 2 patients find a psychiatrist to get them on medicine due to the impact this illness is having on them."

Well who's surprised? She's a therapist who sees CFS patients. Of course she thinks we're all depressed. Gee, every CFS patient who goes to this psychotherapist is depressed? No shit, Sherlock. They wouldn't be going to a therapist if they didn't need therapy. That doesn't mean ALL ME/CFS patients are depressed and need therapy. Her perception is very likely distorted by both her training and the limited subset of patients she sees.

I'll believe the patients' reports about their emotional state before I'll believe the assessment of a psychotherapist (who has not seen those patients) who believes all PWME are depressed. Broad generalizations like that are rarely, if ever true.

If you are in the UK and saying you are not depressed because of how it is over there...how stigmatized folks with this condition are over there, I get it. But, if you are in the states and saying, yes..."I rarely get out, my finances suck, I have no help, but I am truly happy"....BS.

Who is saying they are "truly happy" with their limitations? There seems to be a lot of black and white thinking going on. It isn't an on-off switch -- you are either a) depressed, or b) truly happy.

This illness sucks, be real.

I am real. This illness sucks. It is not true, however, that the only possible response to that is depression. That's where your logic is flawed.

Just the fact that people are trying so many different modalities and supplements shows they are depressed. Why? Because if they were truly happy with the way they felt, they wouldn't need to try and get better. They would be content with their current state of ill health and just "be."

There's some serious false logic there. Trying to get better doesn't show that someone is depressed. We don't have only two choices: depressed, or truly content with our state of health. There is a lot of ground in between.

Your response to this dreadful disease is depression. That's not my response, or the response of the majority of patients who answered this poll. Why are you claiming that because we don't respond the way you do we are lying? Why are you calling BS on us? Our responses to this illness, as varied as they are, are just as legitimate as your response. What on earth makes you think that everyone has to think and feel and respond to things exactly the way you do?

 

[lansbergen]

There's some serious false logic there. Trying to get better doesn't show that someone is depressed. We don't have only two choices: depressed, or truly content with our state of health. There is a lot of ground in between.

Well said.

 

[SOC]

I've never known a doctor who tried to convince his/her patient that they weren't depressed

(note: this post was removed by the author)
Especially if the "doctor" is a therapist who treats CFS patients. The best will help the patient learn to cope. The worst will insist that the patient must be depressed if they have ME/CFS as if it's definitional. They're never going to try to convince a patient they're not depressed.

 

[Mij]

She said, "I don't know why they are saying that (it's a facade), but everyone that comes to me with CFS or Lyme is wickedly depressed or depressed in that this is impacting their life. Their lives have changed, they have been impacted. They may still be able to work, but they are depressed. They work and do nothing else, or their whole day revolves around their condition.. if you have just said, "To hell with it" and you are living in the confines of your home...one is depressed. It might not be a suicidal situation, but you can't be overjoyed with being indoors all of the time. Your life has changed. Many of those people are not being honest. I can't even tell you how many tell me they want to end their lives. Just this week I had to help 2 patients find a psychiatrist to get them on medicine due to the impact this illness is having on them."

It would make sense that a therapist would see more depressed patients, no? My integrative doctor treated many CFS/M.E patients told me he was quite surprised at how many didn't feel depressed, but hopeful for a better life with treatments.

 

[Gingergrrl]

I am not addressing this solely at SOC but it gets so tiring for me of the constant bashing of all therapists and mental health professionals across the board. It is the one reason that I often consider leaving PR but I stay b/c there is so much other stuff here that I find to be of value and several friends that I have grown to love and cherish.

I worked as an LCSW/therapist in mental health for 16 years. My employer held my job for me for over one year until I was finally "medically separated" yesterday due to my illness. I worked in a mental health team with psychiatrists, nurses, social workers, occupational therapists, etc, in an outpatient hospital based program.

Contrary to what I read here, none of my team was in this profession for the money and if I could by the grace of God regain my health, I would work for the rest of my life for free. I would volunteer once a week right now if my health permitted it and I volunteered on a hotline for ten years.

Believe it or not, there are both doctors and therapists who know how to conduct a proper assessment for depression. When I met with a new patient who reported to be depressed, they may or may not have outwardly appeared to be depressed as often the internal emotions do not match the outward presentation and someone acutely suicidal could present as "happy" or even manic.

I could assess if the person was depressed from a psychiatric issue such as Major Depressive Disorder, Bipolar Disorder, Schizoaffective Disorder vs. a depression that was co-morbid with drug or alcohol use. I could assess if there was an organic brain injury or cognitive impairment/dementia (which can mimic depression) and I could assess if the depression was situational (a recent break-up or loss) or if it was due to bereavement and grief over a recent death. Lastly, I could also assess if the depression was a by-product of living with a severe physical, biological illness. Of course many of these overlap and it is not so cut and dry as I am making it sound. Two of the most key questions are asking the person in their own words to explain how THEY feel and what is THEIR goal for coming to treatment.

Everyone on PR seems to be horrified when ME/CFS patients are mis-portrayed (myself included) but it seems absolutely okay to trash all therapists, social workers, and mental health professionals across the board and I really do not understand why.