r/CFS is the biggest shithole I've ever seen

[stellaluna]

Can I say something controversial? Something that always gets me attacked on that subreddit?

I find that biofeedback has been helpful for me. I am absolutely NOT saying that it treated my illness. What it did do was give me a small bump in my quality of life. It helped me gain some autonomic control, which can be beneficial for pacing and rest. I personally think that any improvement in quality of life is precious.

People on that subreddit are very reactive to this. I think it’s a similar situation to the ivermectin (e.g., reactivity to the mental associations to that word). People get very upset and tell me that it harms ME patients. I never said it didn’t. Just that it was helpful for me personally.

I am very averse to CBT due to previous experience with it (even pre-illness it was harmful to me). While I have such strong feelings about CBT, I would never bash someone who said that CBT improved their life. If it helps, then that’s great.

Oftentimes with ME the first approach to treatment is not to treat the illness itself (because we don’t really know how to treat it), but any additional factors that CAN be reasonably treated (e.g., POTS, MCAS, mental health, etc.)

But really I guess it’s just really frustrating when people refuse to hear me out…

 

[Rufous McKinney]

I find that biofeedback has been helpful for me.

I hope you can feel comfortable enough here to express such views.

I"d say we have a pretty broad array of perspectives around here. (But still, somebody might show up to disagree, due to the human nature factor) We are both hapless victims of the laws of physics, AND Wizards who have considerable power to speak to the body. I think both things are true.

Just that single factor called stress- can we have far less of it? It affects us greatly. CBT does have some tools for reducing some of this stress.

In many ways, it's in this area that we have the greatest chance for personal growth, as a being. We have some control over Our Relationship To the Thing. Our attitude about our illness and how we view This Beast, is a huge aspect of our daily struggles. We can improve our own attitude far more than, say, anyone else's.

I think it’s a similar situation to the ivermectin (e.g., reactivity to the mental associations to that word). People get very upset and tell me that it harms ME patients.

is this from the COVID-baggage?

I live in a country where Ivermectin is very commonly taken periodically to rid one of parasitic infections. Doctors outside the U.S., use it extensively. My GP gave me an RX for Ivermectin, early on in the COVID pandemic before any vaccine existed. My GP is a brilliant doctor, btw. I still have that Ivermectin, and I"d take it if I were to get COVID.

Then, I had to witness the ridiculous ivermectin backlash, and it's described as horse dewormer and you get it at the Vet. I listened to Rhodes Scholars on National Television, state that.

GOOD GRIEF.