how do you guys respond to the psychiatric accusations

[Aerose91]

OK. I may not gather much of a following with this.
I had psychiatric symptoms and still consider myself vulnerable. I had Bipolar forever and when I moved against mercury Bipolar was replaced with ME (after the fillings were removed in a less than optimal way).

With ME, I had an "all-low-monoamine depression" and that left when I started mB12. I am truly amazed by anyone here who does not have a psychiatric component to their illness.

We have myelin sheaths being chewed away, wonky REDOX systems and not enough BH4 assist in the formation of neurotransmitters. And I am not even going to touch all of the gut issues around here and the new ideas about mental health issues being tied into the gut biome.

I don't deny that I have presented with psychiatric symptoms. I tell them that they are the my brain's way of saying if is unhappy. My retinas made the same announcement by developing holes and my colon by growing over 100 polyps, and my skin by getting eczema and psoriasis, and my endocrine system by going off line......By now, they are attempting to drive away....

And I don't really give a s**t what people think about how my brain is functioning. Maybe that comes from decades of dealing with this sort of thing. But with Freddd's Protocol people have seen an improvement and are starting to listen. They know that I am on to something.

I'll end with this. Remember, I am too far away to shoot A percentage of the people here will not have full insight into the degree of psych symptoms/ depression/ anhedonia that they had until later in their recovery. Only then will tey perceive themselves
as others have. Truce??

I don't disagree with you, stridor. There are certainly plenty of psychiatric problems that arise from this physical illness. But therein lies the difference. Our MINDS are fine, our brains are damaged. People who think we are psychiatric believe that our minds are distorted and we need psych drugs because of that. In fact it is our brains that are distorted and we need relief of the physical illness in our brains in order to function correctly again. Psych med.s are both a band aid and the start of a rabbit hole that I personally don't want to go down. They will heal nothing.

 

[stridor]

@Aerose91
I see your point and don't disagree. You choose to interpret similar symptoms differently. I certainly support your decisions around this concerning treatment. But I have some comments:

I think that I have grown somewhat immune to certain perceptions. My wife has not and will become quite upset if anyone suggests that I have a psychiatric illness.

For me, and perhaps it is because I had psych symptoms for decades before finding the cause, I seem to have more tolerance. The brain only has so many ways of saying "ouch" and will produce a variety of what have been categorized as psychiatric symptoms to communicate this.

If someone suggests that I am depressed, I am not insulted anymore than if they tell me that I am bleeding from a cut. I may not differentiate as much as some between the physical and mental aspects of my illness. This changes with Drs as I am hard-wired to fight against institutionalized ignorance (regardless of the practicalities of doing so).

My mind was not fine and it still is not. Much better, but I am still a bit fogged and more than a bit when I get tired or have been stressed (adrenals shot). No matter how I define "mind" - whether perceptions and interpretation of my world, incorporation of my thoughts and feelings, or my inner sense of "self" and the self-talk or inner voice, my mind was not OK.

This in turn affected how I interfaced within my environment....and the people in it. It was this change that they were picking up on. I would explain that a) it made no sense to treat the symptoms of one aspect of what was wrong with me when the opportunity existed to go after the cause and thereby improve everything. Plus, b) I needed these symptoms to gauge the effectiveness of my treatments.

In 2011, I had to take my wife to all of my appointments because I couldn't understand what people were saying to me. nor remember it. I was incapable of feeling joy or happiness, I lost interest in the world and I drifted into a monochrome existence. I would play solitaire all day and then fall asleep in front of the TV.

I was a broken record and all I could think and talk about was mercury toxicity. How my wife stood it is one of life's mysteries. I can think of no facet of my Mind that was not affected except perhaps for my stubborn will to push forward.

I don't want to sound "preachy" but it is hard to communicate some ideas without the possibility that it will come across this way. I respect everyone's need to deal with this horrible illness in any way they can.

But I wonder....until we embrace the full spectrum of this disorder (as much as insight will allow) can we really hope that anyone else will?

To me, if we downplay or decline to consider the mental/psychiatric component to the illness does this differ much from those who choose to deny, ignore or downplay the fatigue component? Again, that is offered in a non-judgmental and conversational tone - brad

 

[Raines]

I have used a similar tactic myself, which is this: I ask people to name just five of the symptoms and conditions that ME/CFS patients face, not including fatigue, because with a name like chronic fatigue syndrome, the fatigue symptom is a bit of a giveaway.

I never thought of this, thank you for this brilliant idea.

 

[SOC]

Because of how much they did for me in the beginning I owe them at least a second chance should they want to take a different approach, they just haven't done that yet.

Of course. No broad generalization ("We should just dump anyone who is difficult") applies to every situation. Life is full of subtleties.

FWIW -- in my experience, the people who I think really do care about me (sister, father) but were stuck in their critical mental rut, came around after I cut them out of my life. They needed the shock of realizing their behavior was so unacceptable that I was willing to disconnect from them rather than put up with it any longer. I suspect there was something in their heads telling them if I was willing to listen to their untruths, I must at least partially believe it. No one puts up with people telling horrible lies about them, right? The shock of realizing how truly rude they were being finally brought them around, but it took action on my part, not just telling them their behavior was rude and abusive.

They came back willing to keep their mouths shut and even seem to have developed a slight grasp of the reality of the situation. They tend to avoid the whole illness issue -- in fact it's kinda funny to watch them try to dance around it so they don't have to acknowledge it -- but they are not critical.

 

[Aerose91]

Of course. No broad generalization ("We should just dump anyone who is difficult") applies to every situation. Life is full of subtleties.

FWIW -- in my experience, the people who I think really do care about me (sister, father) but were stuck in their critical mental rut, came around after I cut them out of my life. They needed the shock of realizing their behavior was so unacceptable that I was willing to disconnect from them rather than put up with it any longer. I suspect there was something in their heads telling them if I was willing to listen to their untruths, I must at least partially believe it. No one puts up with people telling horrible lies about them, right? The shock of realizing how truly rude they were being finally brought them around, but it took action on my part, not just telling them their behavior was rude and abusive.

They came back willing to keep their mouths shut and even seem to have developed a slight grasp of the reality of the situation. They tend to avoid the whole illness issue -- in fact it's kinda funny to watch them try to dance around it so they don't have to acknowledge it -- but they are not critical.

I'm glad you were able to somewhat mend things. That hasn't happens yet for me, they think that I'm an asshole since I turned away from them after they helped me so much. What they don't know is that wasn't a quick decision and don't realize that most of the time I'm too sick to contact them anyway. Who knows, it's just better when it doesn't come up either way.

 

[SOC]

I'm glad you were able to somewhat mend things. That hasn't happens yet for me, they think that I'm an asshole since I turned away from them after they helped me so much. What they don't know is that wasn't a quick decision and don't realize that most of the time I'm too sick to contact them anyway. Who knows, it's just better when it doesn't come up either way.

Yes, it's hard when you have to turn away from people you care about. Even if it's the right decision, it's an incredibly difficult decision and it's a wrench. It took my family a couple of years of practically no contact with me to realize that (surprise, surprise) they missed having me in their lives, even if I am sick.

It came about slowly. They would call me occasionally, even if I wasn't calling them. If they could carry on a civil conversation without criticizing me, we would talk. If they started in on the old garbage, I'd say, "I'm not putting up with that" and hang up or walk away. It's like training a puppy -- reinforce the good behavior, discourage the bad behavior. Violence, while occasionally tempting, is not necessary.

My family wasn't into the psych theory. In a way, their position was harder to fight. They belong to a religion that doesn't use medical care. They believe God heals everything. If you remain ill, it's because you are not praying hard enough, or have some kind of erroneous religious thinking. Kinda like the psych theory, but with strong religious underpinnings that are almost impossible to argue. They would have to give up their entire religious philosophy in order to accept that it's not my own fault I'm ill. They firmly believe that if I'd just try hard enough I'd be healthy.

In the end we managed a truce. They still believe I could be better if I really wanted to be. However, they've accepted that's not going to happen and that my life is difficult, even it's my own misguided fault. They aren't going to help me in my misguided beliefs (and certainly not with anything medical), but we can have perfectly fine conversations about family, the weather, and current events without them always criticizing me and my decisions about my health. We just avoid the issue, which is rather silly given how ME affects every minute of one's life. Still, they're kind in their own way. They feel sad, not angry or irritated, when I can't do something with or for the family. They're happy for me when my health improves, even if they don't accept that it's good medical care and not changing the way I think that it effected the improvement. It's not perfect, by any means, but it's better than a constant barrage of criticism and frustration.

 

[SOC]

To me, if we downplay or decline to consider the mental/psychiatric component to the illness does this differ much from those who choose to deny, ignore or downplay the fatigue component? Again, that is offered in a non-judgmental and conversational tone - brad

I think the main issues are the claims of causality and universality.

The causality theory claims that ME is caused by psychological issues ("bad thinking", not organic problems in the brain) and that all that is required is that we correct our thinking. No medical intervention necessary or wise. They have no evidence whatsoever to back up this claim. It's pure conjecture based on the fact that they can't see the organic cause.

The universality theory claims that all PWME have mental illness by definition. Again, no evidence to back up that theory. I accept that some PWME also have mental illness. Why not? Some people with cancer also have mental illness. It also seems reasonable that the trauma of having a life-destroying chronic illness can cause some people to become anxious and depressed. Some people with cancer become anxious and depressed. No surprise. Finally, it's also possible that given the neurological nature of the illness, the illness may be causing organic problems in the brains of some PWME. It does not follow that because some PWME have comorbid psych conditions, all PWME have psych conditions or that ME is primarily a psychiatric illness.

I, for one, have no depression or anxiety (or bipolar disorder, or anything else of that nature) with ME. Decades before ME hit, I had depression as the result of life circumstances. I had good therapy and was cured of depression long before ME struck me down. I know very well what depression and anxiety are and how they feel and I don't have them now. Not even close. I am not alone in that. ME and mental illness do not necessarily go hand-in-hand.

So while I have much empathy for PWME who have comorbid mental illness, I categorically deny that ME is primarily a mental illness, that all PWME have mental illness by definition, or that treatment for mental illness will cure ME. There is, quite simply, no evidence to support any of those theories any more than there is evidence that mental illness is a either a direct cause or symptom in all cancer patients or that psychotherapy will cure cancer.

 

[chipmunk1]

if ME were a "depressive illness" you would expect to see a better response including "cures" from antidepressant medications.

 

[redaxe]

Another easy way to shut people up is to say that the Red Cross will refuse to take blood from a patient that has active or past CFS. If it was psychological no need to ban blood donations.

 

[Valentijn]

Another easy way to shut people up is to say that the Red Cross will refuse to take blood from a patient that has active or past CFS. If it was psychological no need to ban blood donations.

Even the psychobabblers can't claim it's for our own good. After all, doing something "normal" and healthy like donating blood should surely be encouraged among deconditioned hypochondriacs, or whatever it that they're calling us currently.

 

[capnJack]

I can't believe that at 2 years now I'm still getting psychiatric accusations, and from the same people who thought that since the beginning. I don't think my friends ever believed me that I had a serious illness and thought I was embellishing. They thought I would move back home, rest a couple months and be good to go. Now, 2 years later and much sicker they present it as "we say this because we care, we want to see what's best for you" and since I've gotten worse assume that that's proof of me being psychiatric.

I've told them everything I can and will always offer to share all my medical records. The insult with comments like that runs deep and I'm flat out of ideas of what to say. Not to mention exhausted.

I think that people just aren't familiar with what a metabolic disease plus about half the doctors were brainwashed that it is a mental disease so you're stuck educating people and hoping that they get it. You have to be strong and demand people take you seriously.

 

[stridor]

@SOC
I don't think that there is much difference between our positions on this. I also categorically deny that ME is the product of a psychiatric/psychological problem.

In my case, I have not found it t be particularly useful to divide my symptoms into medical/mental or on which side of the blood-brain-barrier the symptom originates. I see the same processes in play whether it is OI, CCSVI (blood going the wrong way in my neck), depression or having to use the handrail to pull myself up stairs. Somewhere there are cells having a problem doing their jobs.

One of the earlier things that I noted as I began to recover was that people would seek out conversation with me again. They were not responding to my increase in energy, shorter recovery times, or ability to stand for longer periods of time. They were responding to changes in the psychiatric symptoms, cognitive functioning, and personality.

I understand how this might end up being viewed primarily as a psychiatric condition. That is all that others (including Drs) see any compelling evidence for - not that they exhaust themselves searching out alternative explanations.