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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Depression Poll

Are you depressed?

  • Yes.

    Votes: 55 38.2%
  • No.

    Votes: 89 61.8%

  • Total voters
    144
Messages
91
Many studies show high rates of depression in CFS patients, but usually use inappropriate questionnaires which take physical and cognitive symptoms as an indication of depression. Hence actual rates are difficult to even guess at.

"Many studies show high rates of depression in CFS patients" EXAMPLES please ...

psychiatric guidelines for ME by psychiatrist Dr Stein, Rates of secondary depression r SIMILAR 2 that in other chronic diseases !!!

Wessely etc used 2 advocate antidepressants years ago, NOT anymore even they know they r USELESS, antidepressants r NOT useless in depression hmmm ...
 

Cheshire

Senior Member
Messages
1,129
This is simply NOT true and is psycho blah blah
maybe u should read the psychiatric guidelines for ME by psychiatrist Dr Stein
Rates of secondary depression r SIMILAR 2 that in other chronic diseases !!!

A bit too speedy when reading maybe Dr Speedy... The rest of the quote

but usually use inappropriate questionnaires which take physical and cognitive symptoms as an indication of depression.
is totally unambiguous!
 

snowathlete

Senior Member
Messages
5,374
Location
UK
I feel sadness at what my life has become, no doubt about that, but it isn't depression. They are certainly different things though not everyone understands the distinction. I had depression when I got dumped as a teenager (I know, what was she thinking, right?) and it'very different.
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
The poll should of read as follows:

Is your Depression primary Yes or No
Is your Depression secondary Yes or No

Everyone deals with Depression..
The level depends on the level of trauma one suffers through life.

This poll,,is like saying (if this were a Cancer sufferer support forum)

75% of Cancer patients do not have depression.
 
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Valentijn

Senior Member
Messages
15,786
The poll should of read as follows:

Is your Depression primary Yes or No
Is your Depression secondary Yes or No
That's not what the crappy research papers ask - they claim to merely look at prevalence rates. And those are the rates which need to be disputed.
This poll,,is like saying (if this were a Cancer sufferer support forum)
Try to at least read the first post in the thread before jumping to the wrong conclusion. This poll is about estimating actual rates, and calling into question the badly inflated and spun rates in the BPS research.

By getting accurate prevalence rates, where physical and cognitive symptoms of ME don't fulfill depression criteria, it then becomes more apparent that ME depression rates are indeed similar to what you'd find in acknowledged biomedical illnesses with no psychiatric component.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
I recall reading somewhere how one doctor distinguished ME/cfs from major depression:

With major depression, patients are generally unable to tell you what they would do if only they were not depressed.

With ME/cfs, patients have no trouble describing the many things they would do if only they didn't have ME/cfs.

It was Lenny Jason, apparently the one psychologist who understands, and, IIRC, is himself an ME patient. I read it here someplace yesterday.
 
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Undisclosed

Senior Member
Messages
10,157
It is absolutely against the rules to 'disparage' forum members. It would be extremely difficult for members if they were not allowed to comment that they thought a doctor wasn't up to their expectations or was offering a treatment that they thought was dangerous or even bogus or had made them worse. There is a huge difference between disparaging and criticism. I wonder how that would work, having a rule where we can't discuss a doctor in a negative sense or a treatment either. So somebody comes along and says "hey, I have just seen Simon Wessely and the CBT and GET he prescribed are doing wonders and he gave me such good information". To respond critically or 'disparage' GET and CBT as a treatment or say that Wessely may be offering bogus psychobabble would be against the rules. That just doesn't work.

There should be open conversation here about doctors, treatments, lab tests etc.

Anyways, if you wish to discuss rules, it's best to do it in the moderation forum. :)

To whom it may concern.

If you want to lift what I said here and post it on a 'closed' forum or FB page or where ever it is that you copied it to, why don't you at least read what I have said and not come up with a stupendously erroneous comment like the following:

So the head moderator on Phoenix Rising posted this telling patients they cannot talk about Wessley in a negative way on her forum. How many patients have died as a result of what Wessely's psychobabble propoganda has caused for decades?

Apparently this started quite a s**t storm with tons of posts. Did anybody actually read what I said or did you just blindly accept the erroneous comment? Just exactly where did I post telling patients that they can not talk about Wessely? READ what I said. I said that having a rule that does not allow members to post negative comments about doctors, treatments, and tests would not be a good thing because that would mean that members would not be allowed to post negative comments about doctors like Wessely, negative comments about so called treatments like GET and CBT, or question the validity/reliability of tests. What I said was basically people can and should be able to post negative comments about Wessely and GET/CBT. If we had a rule that forbade this, I would be gone in about 2 seconds.

So basically, if you are going to post negative things about me at least read what I have said and get it right.

For anybody that reads what I say, it is patently obvious that I abhor psychobabblers like Weasley that suggest GET and CBT as treatments for ME.

I just wanted clear that up so I don't get any more emails requesting we delete their accounts because of totally misconstrued comments. I am very sorry for taking this thread off-topic but I felt like I should say something. I just get sick of the lies.
 

Valentijn

Senior Member
Messages
15,786
Apparently this started quite a s**t storm with tons of posts. Did anybody actually read what I said or did you just blindly accept the erroneous comment? Just exactly where did I post telling patients that they can not talk about Wessely? READ what I said.
Aww, cut 'em some slack! Illiterate ME patients need forums too :rofl:

Though it is curious that someone feels compelled to constantly misrepresent reality over there. I wonder what it is they hope to gain?
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
I feel depressed when i feel bad. So i guess its clinical depression without the lacking motivation etc. Like @snowathlete pointed out, its hard to take in how limited you are compared to before. And one is often reminded of this, when in a crash or relapse. On an intellectual level its also depressing to a certain degree that the condition is reasonably out of your hands, and that its so unpredictable. In other words: It`s a nightmare for the conscious mind to make sense of the situation (and even more so when your sense of "self" also is affected by the physiological dysfunction). You finally feel better and get hope, you do something relatively trivial, and bang, hope can be crushed. I dont know of many other diseases that punish effort and willpower so relentlessy.

^depressing:p
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Okay, I'm probably going to start another wild jump in another wild direction, but nothing ventured...

A few weeks ago I was pretty sure I was about to be diagnosed with a psychiatric disorder, because I live in the US and everybody - and I mean every medical professional I've spoken to - gives me this completely blank look when I say 'ME'.

I'd gotten an appointment at the Mayo Clinic, but I had to be referred by my GP for insurance reasons. My GP raised his voice and patronized me. Woven into his rant were the following:
  • If I'd just stop researching and thinking about it so much, I'd feel better (ignore it, and it will go away!)
  • I'm "just depressed" and when I'm "ready to admit" I need an SSRI, I can get one from him
  • I need to acknowledge that the Mayo Clinic is a last-ditch effort that will likely yield no new information
  • I need to acknowledge that if four experts in two disciplines can't find out what's wrong, there is nothing wrong.
  • It was heavily implied that depression wasn't causing my neuromuscular symptoms, but that I was inventing them as a result of my depression (or other delusional states unspecified).
Note that he had been pushing SSRIs on me ever since I first became ill, without evidence or explanation as to why he thought it was a good idea. The appointment before this, he'd tried "it seems you're upset about your illness, and I think an SSRI could help." Uhhh huh.

My Mayo visit culminated in an ITT test and a confirmation of severe adrenal insufficiency, and a tilt table test with a diagnosis of POTS. (And a lot of other 'weird stuff' consistent with what I know of ME.)

I was SO relieved to have a non-psychiatric diagnosis that I had to question what it was about having an affective disorder I would have found so profoundly shameful. Certainly the physicians seemed to think it would be: I'm thinking of their behavior towards me, pre- and post-diagnosis. Compare-contrast: delicate-disbelieving-condescending vs empathetic-kind-concerned-informative. Everyone I know says it's great to have a 'real', 'physical' diagnosis - like if I had been diagnosed with, say, panic disorder, it would have been spiritual. Like the brain is floating somewhere in the aether, rather than firmly in the skull, where it shares resources with the rest of our very real, very concrete bodies.

ME patients have two (very logical!) reasons for being so concerned with the issue of depression in ME. The first is that, even if some of us do have depressive symptoms, we don't want the other symptoms ignored, downplayed, or viewed as some kind of byproduct of the depression lest medical professionals think that if they treat the depression, the other symptoms will 'disappear'. The second, simpler answer is that we don't want to be treated the way that the world treats people with mental disorders. That is, abysmally. We want ME firmly in the 'real', the 'concrete', the 'physical', because anything else would mean we would be treated with even more condescension than we are now.

Everything that is happening to me is happening in my body, and my brain lives here. It's bathing in (mostly) the same hormonal soup as the rest of me. This illness is neuro-immuno-endocrine, so it affects my hormones and to claim that doesn't affect my behavior at all would imply I am above my own chemical makeup.

At the same time, I clicked 'no'. I love this world and the people in it, and I see the future as a positive place. I think I identify depression as a pattern of thinking/feeling that I don't believe I express. But I hovered the mouse over both buttons for quite some time.

-J
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
@JaimeS - my reason for objecting to a psychiatric diagnosis for a physical illness is very simple. It's wrong. A wrong diagnosis means that you get the wrong advice, the wrong treatment, etc.

I have had no problems with diagnoses of anxiety or depression when I have gone to a doctor in the past with anxiety or depression. In fact I didn't need him/her to diagnose it - I told them I was anxious/depressed!

But when I was diagnosed over the phone with a panic attack when I was in fact suffering a severe side-effect of a prescribed drug, it could potentially have cost me my life.

The other problem is that if you are telling the doc that you have a physical illness and they repeatedly refuse to accept it, that is downright insulting. You are being dismissed and disrespected.

There is nothing shameful about mental illness. But if you don't have it, you don't want a diagnosis of it! Just as, if I went to the doc with signs of possible bowel cancer, I would not want to be just sent away with a diagnosis of IBS.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
The first is that, even if some of us do have depressive symptoms, we don't want the other symptoms ignored, downplayed, or viewed as some kind of byproduct of the depression lest medical professionals think that if they treat the depression, the other symptoms will 'disappear'.

That is, we don't want physicians believing:
  • that depression is a feature of the illness
  • that depression 'causes' our other symptoms, when it DOES occur
  • that therefore, our symptoms will mystically vanish if the depression is addressed
So what I'm saying is that we don't want to be misdiagnosed with depression! That, exactly. :)

Re: shame. When I think about being bedridden or my illness making me poverty-stricken enough that I might have to move into my mother's house so that she can take care of me, I'm ashamed. I don't think others should blame me, and I would not blame myself, but I would still feel shame to think that my mother's life, while not over, is going to be significantly narrower and bleaker because of me. I think about having to tell others that, in my thirties, I live at home and I feel ashamed. Whether that's logical or not.

So I fully agree with "there's no shame in being mentally ill" in terms of its spirit. The same way I fully agree with "there's no shame in having ME". Except that sometimes I do experience shame as a direct result of my ME, and I expect other people with other illnesses do as well. Here in the good ol' US of A we barely talk about mental illness, and there is a definite sense of shame associated with being diagnosed with one, although from numbers I've read, it appears that vast swaths of us are medicated regardless. The social stigma is very real. Realization is the first step to becoming more rational, though. ;)

-J
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
So I fully agree with "there's no shame in being mentally ill" in terms of its spirit. The same way I fully agree with "there's no shame in having ME". Except that sometimes I do experience shame as a direct result of my ME, and I expect other people with other illnesses do as well. Here in the good ol' US of A we barely talk about mental illness, and there is a definite sense of shame associated with being diagnosed with one, although from numbers I've read, it appears that vast swaths of us are medicated regardless. The social stigma is very real. Realization is the first step to becoming more rational, though. ;)
-J

I guess I just don't accept other people's labels, and I don't self-apportion blame for things that are clearly not my fault. But maybe if I was in a position where I could perceive myself as being a burden on someone, I might feel guilty. I'm glad not to be in that position, and hope I never am.

If people blame me when I am actually a victim, my response is more likely to be indignation and anger, as indeed it is, because I have experienced a lot of undeserved blame.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
"I don't think others should blame me, and I would not blame myself, but I would still feel shame..."

Shame =/ blaming myself for my illness. Shame results when I compare what I think I 'ought' to be able to do, or ought to have done, and I compare it with my actual capabilities and actual past actions. That includes ways in which I can no longer logically expect to keep up, like energy levels or ability to focus. It is not necessarily linked to feeling culpable for this disconnect or believing that others will believe I am culpable.

I feel like we're getting off track. Regardless of replies, peace out.

-J
 

Mij

Senior Member
Messages
2,353
A few weeks ago I was pretty sure I was about to be diagnosed with a psychiatric disorder, because I live in the US and everybody - and I mean every medical professional I've spoken to - gives me this completely blank look when I say 'ME'.

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