medical professionals, psychologists, and researchers

I know we sometimes talk about getting the word out to GP surgeries etc, but what is the equivalent for ambulance crews, nurses, etc. How, for instance, would you get Dr Muirhead's article in front of them? If just a few read it, they may then talk about it. Sure, some would denigrate it, but there would also be others who would think more deeply about it, and maybe connect some dots. You cannot push this sort of education into the system from the top down. It needs to be readily available at all levels.
 
I’m signed up to go on a T2 diabetes prevention programme due to my considerable weight and slightly above normal Hb1AC. I had to go to get weighed and retested for HB1AC again as I’ve been on the waiting list for a while. The nurse who did that appointment was asking about my health obviously and I said I had ME she was great she immediately said oh well you’ve done well to lose weight when you can’t exercise. Turned out she has a brother with ME and she also mentioned scepticism her own mother in law a GP was dismissive about her brother and clearly the nurse was disgusted by that attitude. It was very refreshing to speak to an informed non judgemental health professional.
 
NelliePledge said:
Turned out she has a brother with ME and she also mentioned scepticism her own mother in law a GP was dismissive about her brother and clearly the nurse was disgusted by that attitude. It was very refreshing to speak to an informed non judgemental health professional.
Click to expand...
Which again brings home the reality that ME is only really understood by people who live with it in some way and also are open minded enough to not prejudge. It's the day-in-day-out familiarisation of having, or living with, a pwME that really helps you see the truth behind the symptoms. In all honesty, if my wife did not have ME, and knowing how hard my wife strives, I would probably still be one of those disbelievers who thought they knew what they were on about. The symptoms of ME are incredibly deceptive.
 
Barry said:
Which again brings home the reality that ME is only really understood by people who live with it in some way and also are open minded enough to not prejudge. It's the day-in-day-out familiarisation of having, or living with, a pwME that really helps you see the truth behind the symptoms. In all honesty, if my wife did not have ME, and knowing how hard my wife strives, I would probably still be one of those disbelievers who thought they knew what they were on about. The symptoms of ME are incredibly deceptive.
Click to expand...
But maybe I was in a minority - before I got ME I decided to believe in ME, although I didn't know anyone with it. I decided that the consequences of my not believing in it would/could be worse than the consequences of my believing in it.
 
Barry said:
I know we sometimes talk about getting the word out to GP surgeries etc, but what is the equivalent for ambulance crews, nurses, etc. How, for instance, would you get Dr Muirhead's article in front of them? If just a few read it, they may then talk about it. Sure, some would denigrate it, but there would also be others who would think more deeply about it, and maybe connect some dots. You cannot push this sort of education into the system from the top down. It needs to be readily available at all levels.
Click to expand...

I have pondered and checked my two ‘safe places’ and can’t find the article I was thinking of, but, many moons ago, there was a very intelligent article in (something like??) the Nursing Times (anyone else remember?), which was very thoughtful and caring towards PwME - perhaps we should include them on our list of professionals who need ‘continuing education’?
 
I think we're getting off topic but I too wanted to say that i am easily as nervous of the attitudes of nurses/paramedics as i am of doctors. I've had several nurses laugh in my face. I saw a consultant (for an unrelated issue) last week & when the nurse took me in pre-consult to check my blood pressure etc, she started of smiling & pleasant.... she opened my notes & I saw her scan down.... her face visibly changed at one point & it seemed obvious to me that she'd seen the CFS (while i could obviously be mistaken about that - she could for instance despise everyone with my particular gynaecological problem, or from my home town! but her later comments confirmed my suspicion). From that moment her expression became sour & superior, bordering on contempt. The temperature in the room seemed to drop. I wont say what she said as it could be identifying, but there were a couple of snide remarks, and i was only with her 5 minutes. The consultant was patronising but at least not unkind.

I've found nurses to be some of the most compassionate people around, and also some of the hardest, coldest most spiteful people I've ever met. It's extraordinary. In my experience the ones they feel deserve it get kindness in spades, but woe betide you if they think you dont... they seem to hate the so called 'undeserving' (in their eyes).
In some ways that's understandable i guess, they are having to give of themselves continually, for low wages & massive workload & high stress. So i imagine it must really piss them off if it's perceived that a patient is asking for yet more of their efforts when they dont actually 'deserve' it.

Having said that, long before I developed ME i had to have a major surgery, & the nurses on the ward seemed to be split into those 2 categories, some were kindness itself, others were distinctly lacking in any kind of kindness & rather cold, hard with an edge of contempt. My ward mates also were dismayed when these nurses arrived on shift, so it wasnt only me.

So yes, coming back to the OP i wouldnt wonder that all kinds of health professionals would want to hide their diagnosis, but it would be great if more of them would speak out with the facts, i hope a subforum could be developed here as @Trish suggests.

Good OP @Graham

Edited - to clarify that it was the nurse & not the consultant that was sour during my appointment.
 
Last edited:
I agree with @Barry, but also feel that we may have drifted dangerously off topic, given that the topic was to encourage medical professionals to tell their story, at least to @Graham, so it could, even anonymously, help with advocacy efforts.

Or that was my understanding of the topic, admittedly this is only based on the words @Grham posted so my understanding may be incomplete.

I may be a little confused.
 
I used to work as an RN. I am barely in contact with any of my former colleagues, but that is also true for many of my non-workplace friends and acquaintances as well now. I didn’t get the ME/CFS diagnosis until after I had to quit working, but a couple of my colleagues knew what was going on with me. Although they were kind and supportive (at least to my face), their patience was growing thin because the quantity and quality of my work was diminishing and that was affecting their work loads.

If I ran into one of the physicians I used to work with, I would be very reluctant to disclose my diagnosis. Partially because of cognitive symptoms; chances are high that I would not be able to organize my thoughts coherently enough to come off as authoritative and professional as I would like.

There was occasional general chatter amongst staff, including physicians, about whether fibromyalgia was “real”, how difficult patients with “functional” disorders are, references about referring to psych when they can’t figure out cause of symptoms. To their credit, the physicians at my last place of employment would acknowledge such patient’s symptoms are real and the cause may be more complicated than a simple physical vs mental dichotomy. At the place I worked before that (and unfortunately where I have to get my health care now), patients with FM, CFS, IBS, POTS, etc, were blatantly dismissed and avoided by staff at all levels from medical assistants to physicians.
 
You must log in or register to reply here.
Back
Top Bottom