Epistemically Challenged "My thinking about science has been...affected by my experience with CFS"

[JaimeS]

And we trust that if they make a mistake, they'll be removed from the profession somehow. By Hippocrates himself if need be.

That, or no one wants to be the person who pays for the lawsuit!

-J

 

[JaimeS]

It is odd, especially now it's so easy to Google everything.

He's a technophobe. <---- Must be the most commonly used smiley on PR, after the smile and the wink...

 

[JaimeS]

Actually, I think I get it now. 'ME/CFS' has been placed into a mental category of exception-to-the-rule. Like, "doctors know everything there is to know EXCEPT about 'weird' illnesses like ME/CFS. Everything else is well-understood by medical science!"

While I think people know a lot more about liver disease than about ME/CFS, I will add that no one knows why people with liver issues' skin itches... though it is hypothesized that the irritation is due to deposits of bile salts in the skin. Hence bile salt chelators and TUDCA as treatments (the latter of which I am familiar with because @mariovitali has recommended it for ME/CFS.)

In other words, they don't know that much about it, either, and even if they did, there is actually such a thing as someone simply being terrible at their job.

-J

 

[meandthecat]

And unless they actually live it, their bubble won't burst. That bubble is a pretty darn comfy place. I'd stay if I could

Who would take the Red pill?

 

[Jenny TipsforME]

tually, I think I get it now. 'ME/CFS' has been placed into a mental category of exception-to-the-rule. Like, "doctors know everything there is to know EXCEPT about 'weird' illnesses like ME/CFS. Everything else is well-understood by medical science!"

Yes I think this may be right for non pwme. For me I lean the other way and forget that doctors can treat some things effectively. I probably have current symptoms they could manage better but it feels like an emotional ordeal to have to contact the doctors. I noticed when I started to wear a heart rate monitor that the things making my heart rate spike were standing (POTS), spiders (phobia) and doctors (phobia?!).

 

[worldbackwards]

doctors (phobia?!).

Experience.

 

[Jenny TipsforME]

My current GP is actually supportive but I have past dr-patient relationship baggage. Someone (Klimas?) talks about ME patients having PTSD from bad experiences with doctors rather than the ME itself.

 

[worldbackwards]

My current GP is actually supportive but I have past dr-patient relationship baggage.

Ditto. But I suspect people who've been repeatedly punched in the face by certain types learn to take guard early when they meet them.

 

[Jenny TipsforME]

1. They usually tend to think they will NEVER get ME. For some strange reason.

I've been thinking about this and realised that I missed out saying that I was the same! My sister had severe ME for 3 years before I got ill when we were teenagers. People convinced me that there was a personality aspect to it (not that it was psychological, we all thought she was very physically ill) but our personalities are different and I didn't think I'd push myself so much that I'd get it. Even when I got glandular fever it was the thought of being ill for a few weeks that was a bummer, I don't remember being scared of ME. Why? I had the same trigger and shared the same environment and many genes with my sister. Why would I not think I'd get it?

 

[ScottTriGuy]

things making my heart rate spike were standing (POTS), spiders (phobia) and doctors (phobia?!)

Experience.[/QUOTE]

Your physiological reaction is indicative of trauma. Doctors are your trigger because they were the original source of trauma.

 

[Jenny TipsforME]

@ScottTriGuy
Yes I think you may be right. I wear a sports heart rate monitor to try to stay under my anaerobic threshold as a strategy to avoid PEM. On Monday I noticed I went tachycardic when I remembered the process of getting diagnosed (that's overcoming the heart rate lowering properties of the beta blockers I'm on for POTS). Generally it's only standing that does this.

15 years ago I went through counselling with a ME charity because there is unnecessary trauma as repercussions of the physical illness/disability. I don't think my experience of doctors has even been that bad compared to some of the horror stories people have.

 

[ScottTriGuy]

"Horror stories" indeed.

I believe the psychological effects of medical system / allo doctor invalidation of our physical symptoms is vastly under played, ignored and diminished.

The fact that you are still physiologically triggered over 15 years later speaks to that.

I am also a firm believer in wielding shame as a powerful social lever to effect change. We are social animals and shame / marginalization is how society often tries to control people (prison for example). As me/cfs patients, we are too often shamed and marginalized.

Its time to turn the tables and shame those that deny our illness, experience, our being. We have emerging biomedical research evidence to support our physical symptoms. Shame should be firmly directed at this source of harm: Ministers of Health and (some) allo doctors.

Shame facilitates change.

 

[Evet]

I can sympathise with your phobia of doctors. Have currently a very good doctor, who takes the view that we are adults, and that if I feel a med is not good for me, I can simply stop taking it. This necessary because of recent (hospital) pressure to take statins, which I DO NOT WANT. What is worrying is that she's very active politically, and only works 2 days a week - it can take literally a month to get an appointment with her as distinct from some of the other clutzes at the practice. Both I and hubby have experience of MANY grades of doctors, from childhood onward. There are awful doctors, and there are doctors who are simply closed miinded, and there are doctors who are actually good at what they do.

But my question is HOW do we DO something about this? Shaming? How?

 

[bertiedog]

@JaimeS wow that must be so frustrating! It's like talking to a brick wall.

The vast majority of my friends are like this, it drives me mad. In fact I only have one person who takes an active interesting in what I find about this illness and how it might relate to my condition.

However my friends, the majority of which are in their early 70s have incredibly closed minds regarding illness and what might be causing it. They choose not to look at their lifestyle/diet as a basis for what might be contributing to their obesity/pain etc. Instead they would rather take many different toxic drugs with known severe side effects than do anything for themselves to see if it would help their condition. For example they don't want to try a change of diet like giving up gluten to see if it helps with acid reflux to the degree they need a proton pump inhibitor which can go on to cause other serious problems. Perhaps if they had to pay for their health care they might take it a bit more seriously (nothing to pay upfront with the NHS).

With our illness its way worse of course because there has been so little research until recently and I think my friends just think that nothing can be done for the condition so there is no point in talking about it!

All of this I find incredibly frustrating.

Pam