Thank you for your patience with all of us,
@MelbME.
I want to describe a very, very common experience for ME/CFS or LC patients.
I’m 29, bedbound and I live with my parents. I’ve had a therapist for three years because being severly ill is hard.
She describes my mental health as robust and she has sent a writren statement to my GP.
Every single healthcare worker I’ve talked to, except for a former ME/CFS researcher, have asked about my mental health. Every single one.
It would be fine that they asked to make sure that I’m doing okay, but all of them have assumed that I’m not. When I was unable to sleep for weeks, my GP put me on meds to calm my thoughts, even though I stated very clearly that I don’t have thoughts that keep me up. This caused me to go additional weeks without sleep, and I developed lasting visual disturbances due to what’s most likely neurological damage.
My parents still believe to some degree that I am negatively affected by my mental health. Because why would everyone ask about it if it wasn’t important? I’ve had so many discussions with them about it and I’ve experienced lasting deterioration to my health because of it.
The worst part about being sick is that my parents don’t understand me. I’m living dead. I’ve lost my life and everything in it. I don’t have much hope for my own future. But that doesn’t come close to how soul shattering it has been to feel so incredibly alone, mistrusted and misunderstood. Can you imagine being completely dependent on someone to survive, yet look forward to the days that they are not home? Now imagine that those are the people that you love the most.
I’m not sure that I will ever be able to fix my relationship with my parents. They love me and they want to help me in any way they can, but they don’t understand that they are causing lasting harm. I’m not even sure I want to tell them everything, because it would destroy them to know what they’ve done when they tried to help. But it isn’t their fault. This is 100 % on the healthcare workers (and the BPS lobby).
This is what happens when you let psych anywhere near ME/CFS. This is common. It happens because the psychosomatic trends have caused everyone in our society to believe the mind-body bullshit.
If you or your research team ask these questions of the parents, you can and will do lasting damage to the children. Most parents are not Hutan - they don’t know any better. I didn’t either before I got sick. The questions will negatively influence the GP, the parents and their child. It is unethical and it’s harmfull.
In my opinion, the neuropsych part of this study should be stopped. It’s not worth the risk, and the benefit of your research doesn’t outweigh the damage or cost of theirs. It’s unethical to enable this to happen.
I have so many friends with the same experiences. I’m not alone in this.
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