What Psychological Topics Need to Be Researched?

[Invisible Woman]

In Croatia, the land of chronic fatigue = psychosis heh

But yeah, why I'm pushing the idea is because while we have countries whose establishment follows the cfs=psysomatic regime (and we will have them for a while longer), it is of benefit for them to at least have relevant research pointing to effective methods of supportive therapy.

I see what you mean. However, I am in the UK and have been ill for about 2 decades now. I have learned that the guise of "helping" and being "supportive" can be used to con folk and twist the narrative.

Take CBT for example: originally it was used in the supportive way. Then it's meaning became twisted before or around the time of the PACE trial. It became a stick to beat sick patients with. No longer supportive but now addressing false illness beliefs.

There is a wealth of info on PR about how low the standards in psych research are, how the names of things are twisted, etc...

We have seen that the likes of Chalder are taking their show on the road into Eastern European countries. It is very easy to subvert your reasonable wish for effective methods of supportive therapy to be subverted.

 

[ivorin]

I see what you mean. However, I am in the UK and have been ill for about 2 decades now. I have learned that the guise of "helping" and being "supportive" can be used to con folk and twist the narrative.

Take CBT for example: originally it was used in the supportive way. Then it's meaning became twisted before or around the time of the PACE trial. It became a stick to beat sick patients with. No longer supportive but now addressing false illness beliefs.

There is a wealth of info on PR about how low the standards in psych research are, how the names of things are twisted, etc...

We have seen that the likes of Chalder are taking their show on the road into Eastern European countries. It is very easy to subvert your reasonable wish for effective methods of supportive therapy to be subverted.

And yet a man's got to hope for something. I used to be able to handle it all just riding on Rituximab trial hopes when I was moderately ill, now that I'm bedridden I find myself searching more and more for psychological support. I guess it may be a matter of mental strength but I can't help but be naive and think a good piece of science literature in the right hands can save lives. Just my two tired cents

 

[me/cfs 27931]

In Croatia, the land of chronic fatigue = psychosis heh

But yeah, why I'm pushing the idea is because while we have countries whose establishment follows the cfs=psysomatic regime (and we will have them for a while longer), it is of benefit for them to at least have relevant research pointing to effective methods of supportive therapy.

I found a therapist (United States) who has worked extensively with AIDS patients. He had never seen an ME/CFS patient before me, but his background has been very helpful in finding coping strategies and energy management strategies.

Finding a therapist with extensive background working with severe chronic diseases might be a good starting point.

 

[ivorin]

I found a therapist (United States) who has worked extensively with AIDS patients. He had never seen an ME/CFS patient before me, but his background has been very helpful in finding coping strategies and energy management strategies.

Finding a therapist with extensive background working with severe chronic diseases might be a good starting point.

That's exactly what I'm looking for at the moment. I was thinking the same thing

 

[Invisible Woman]

And yet a man's got to hope for something. I used to be able to handle it all just riding on Rituximab trial hopes when I was moderately ill, now that I'm bedridden I find myself searching more and more for psychological support. I guess it may be a matter of mental strength but I can't help but be naive and think a good piece of science literature in the right hands can save lives. Just my two tired cents

I sympathize. The problem is that I have seen it happen before. For example when Action for ME (UK patient charity) decided to support the PACE trial. It would be well worth other countries to learn what went wrong for UK patients.

Support such as @Webdog is suggesting is no bad thing. That's very different from requesting psych research into ME though.

 

[trishrhymes]

I do understand the need for support and help with coping with severe chronic illness. I don't think research is the way to find the best therapy.

The quality of the therapy seems to me to depend on the ability of the particular therapist to help you find ways of coping, which is much more down to the person than the label attached to the therapy. It could be CBT, or counselling or clinical psychotherapy or whatever.

 

[NelliePledge]

I do understand the need for support and help with coping with severe chronic illness. I don't think research is the way to find the best therapy.

The quality of the therapy seems to me to depend on the ability of the particular therapist to help you find ways of coping, which is much more down to the person than the label attached to the therapy. It could be CBT, or counselling or clinical psychotherapy or whatever.

Definitely agree with this Trish. A good therapist is the key.

 

[BeautifulDay]

Thanks @sparklehoof for starting this conversation. I am very interested in the psychological aspects.

While I agree that we don't need research into the psychological issues that we are facing, what we do need are friends and therapists to help us along the way.

I have a fabulous therapist who has been seeing me for years. Through all the ups and downs, through all the doctors telling me it's just due to stress and I should get more sleep or take some SSRIs. She's been there when I went through a year of stomach issues and ER visits before the doctors figured out I have intermittent gastroparesis. She's been there when doctors were dismissing my fainting episodes as in my head, until my cardiologist documented my extremely low pulse pressure upon standing. She was there as I had to come to terms with my cognitive loss and forgetting my kids names and getting lost and not being able to follow along in conversations. She was there as I fought to find a way out of the memory loss. She was there when we discussed how my grandmother died in her 50's from an MS like disease where she had foot drop and severe memory loss and chronic fatigue. My doctors now believe she is the one who passed this onto my mother.

As I got more and more confused, we spoke about how it must have felt for Robin Williams having Lewy Body Dementia and forgetting people and things and having hallucinations and then taking his life. She was there for the moment of discovering that my chronic fatigue is due to Mitochondrial Disease and that my specific mutation had a 50% chance of being passed onto my children. She was there when I learned that while only 1.5 of my children should have the mutation, I passed it onto all three children. A definite "Oh F me moment", when only my mother got the mutation out of the three siblings. My therapist was there again when we figured out what to tell the children and how.

I have intermittent foot loss, where all of a sudden a foot (or hand) will go out for just a second and I fall to the floor (or drop things). 3 weeks ago, I had this happen as I was coming down the steps with the recycling and I fell on glass bottles and ended up with 15 stitches in my left thumb and no feeling on a large part of my thumb. Right now my therapist is working with me on feeling my feelings about the loss of movement and the loss of feeling. Grieving for what's lost, etc.....

So for me, I don't need any psychological aspects of ME researched -- what I need is my therapist. She had the tools and guidance and wisdom to get me through everything so far. And believe me with three sick kids (from hearing impaired, autistic spectrum, vocal cord and diaphragm weakness, foot drop, etc....) and a sick mom, there is a lot there for her to work with.

My hope is that everyone finds as supportive of a therapist and that insurance pays for it.

Thanks again @sparklehoof for starting this conversation. This has been a great thread for many of us to vent.

 

[sparklehoof]

To be honest -none.

Until we have an effective treatment then I would rather that all resources were spent on developing a treatment or cure. We have spent far too much on psychology/psychiatry already with only harms to show for it.

Thank you for sharing. I can definitely understand where you’re coming from.

 

[sparklehoof]

Okay, whilst I echo, strongly, the post above, I'll give the questions a go.

1. I have it, I do not have the other "invisible illnesses"
2. Yes, they are offered treatment, we are, at best, ignored apart from by BPS, charlatans, abusive media and as low hanging fruit by budget cutting government departments.
3. No, I'm old, and feel much older, by the time a treatment is devised and released I'll definitely be past "retirement" age, probably not even be here.
4. None*

*edit is "pissed off with the whole effing thing" an emotion

Thank you for your contribution.

 

[sparklehoof]

I wholly disagree that psych research is never useful.
I agree that almost without exception, in the CFS field it has never been useful and has been actively harmful, and the risk of either misrepresentation by the researchers or hijacking later makes useful research even harder to conceive of.

Having said that.
I have problems managing my activity level, and often do too much. Effective coping techniques to help with activity managment, and explaining to others may have reduced my severity at the moment from not bedbound to able to work part time.

A large part of this is solidly in the psych realm - this is not about how to determine proper regimens, but how to stick to them, perhaps in the face of confusion, and peer (or other social) pressure.

'put it all into drugs' - it should be noted that there are no clear druggable targets, and if it turns out there is no effective medication for all PWME, this is likely to be a 20 year delay even if a druggable target is found.
(It is possible a treatment regimen may be found that benefits everyone with rituximab, or cream-cakes, or whatever, in which case the delay may be considerably less)

Such research - even if it is optimal from the other perspectives, if it is spun as 'to cope with GET' or 'to manage exercise so you can get fitter' is actively unhelpful.

I appreciate your feedback. Thank you.

 

[sparklehoof]

And yet a man's got to hope for something. I used to be able to handle it all just riding on Rituximab trial hopes when I was moderately ill, now that I'm bedridden I find myself searching more and more for psychological support. I guess it may be a matter of mental strength but I can't help but be naive and think a good piece of science literature in the right hands can save lives. Just my two tired cents

I’m so thankful for your comments. I can definitely relate. Thank you.

 

[Alvin2]

Here is one that i would like to see researched, why do CBT/GET pushers refuse to accept reality and continue to try and "prove" their lies at any cost including harming patients?

 

[sparklehoof]

Thank you all for your comments and feedback.
I intended for my questions to be innocuous and supportive and I would like to apologize if they triggered negativity.

I fully agree that a cure is needed. I can also understand that research taken out of context can and has been used to the detriment of the ME community.

I wish that I could research the physical cause of ME and create a cure, but I’m sure that I cannot. I’ll give more thought to your replies.

I’ve lost a lost half of my life (and counting) to ME. I’m trying to come to terms with my personal feelings of vulnerability, fear and unpreparedness for the years to come.
I began asking myself, “is there any way that I could get through more college to increase my chances of supporting myself/entering the work force immediately, should I ever became healthy enough to work?”
I began thinking about possible careers and asking questions surrounding emotions such as fear, shame, and vulnerability in relation to chronic invisible illnesses. I began thinking about going into the field of psychology. It may be a while before we have a cure, so I was wondering if psychological research could be beneficial in the meantime.

If anyone has more research ideas or wants to share their experience going for a masters or PhD while scoring about a 65 on the MEA scale, please share.

Thanks

 

[trishrhymes]

Thank you, @sparklehoof for explaining your reason for asking the questions and provoking this fascinating discussion. I applaud your wish to help the ME community by doing useful psychological research.

I think someone suggested, perhaps tongue in cheek, that research could be done on the motivations and attitudes of the psychiatrists, psychologists and doctors of all sorts who brush us into the dustbin of psychosomatic, malingering, not really ill etc.

I think this would be a really valuable piece of research because I suspect it would show a range of motivations from a sense of arrogant superiority that classes us as beneath contempt to genuine misunderstanding and fear because they don't know how to deal with us, as well as all sorts of personal stories of, perhaps a sick sibling who got all the attention, to a sick parent who the child misinterpreted as uncaring.

I think it would be instructive for the doctors and psychologists to have the spotlight turned on them, and it might help them understand better their own motivation, false assumptions and limitations.

 

[ivorin]

Thank you, @sparklehoof for explaining your reason for asking the questions and provoking this fascinating discussion. I applaud your wish to help the ME community by doing useful psychological research.

I think someone suggested, perhaps tongue in cheek, that research could be done on the motivations and attitudes of the psychiatrists, psychologists and doctors of all sorts who brush us into the dustbin of psychosomatic, malingering, not really ill etc.

I think this would be a really valuable piece of research because I suspect it would show a range of motivations from a sense of arrogant superiority that classes us as beneath contempt to genuine misunderstanding and fear because they don't know how to deal with us, as well as all sorts of personal stories of, perhaps a sick sibling who got all the attention, to a sick parent who the child misinterpreted as uncaring.

I think it would be instructive for the doctors and psychologists to have the spotlight turned on them, and it might help them understand better their own motivation, false assumptions and limitations.

I second this wholeheartedly.

 

[tudiemoore]

I've been giving this serious thought.
I believe we all benefit from connection, support, encouragement--

However, the physcial piece usually prevents me from accepting these things.

I really just don't give a s###t -- give me the possibility of not having to decide which of the things I want/need to do today, of not being overwhelmed and feeling depleted by negative people, situations, of being able to enjoy my body with a walk, a bike ride, or even cleaning out my messy car and going to the car wash--

Maybe then I can hear the encouraging words, make the connections, accept the supportive well-meant conversations and actions.

But then, that's just me--
tm

 

[Wonko]

I have intermittent foot loss, where all of a sudden a foot (or hand) will go out for just a second and I fall to the floor (or drop things).

What a wonderful way of describing it, I've been trying for decades to come up with a description of it and have failed. Thank you

 

[chipmunk1]

I would like to see a MRI study looking for signs of brain activity in psychobabblers.

 

[Wonko]

I would like to see a MRI study looking for signs of brain activity in psychobabblers.

Unless you're testing for the simple presence of a brain then wouldn't a fMRI be a better choice? If you were to see evidence of brain activity on a MRI then it's time to worry, scream, and run, and possibly randomly nuke things, coz aliens are invading .