Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
He's the medical advisor to Action for ME.What's this guy's background in the ME world?
Sorry, didn't think.What is "Action for ME"?
It might be because I'm American but I haven't heard of it.
Eeyore, I agree with much of what you've written but I just wanted to comment on this point summarising part of Alistair Miller's talk. No doctor treating cancer or RA would say to their patients "We have this really useful therapy called CBT which some patients have found has helped them to cope with the impact that some of their symptoms have on their lives. Therefore, we won't be offering you radiotherapy / methotrexate. How's that with you?"7) It is logical to use psychological approaches to help patients just as it is logical to do so in cases of cancer and RA
6) Like any disease, the hard line between psych and physio goes against everything we understand about the human body
7) It is logical to use psychological approaches to help patients just as it is logical to do so in cases of cancer and RA
There are actually studies suggesting psych therapy can improve survival in cancer.
Oh - my former PCP used to push the "you should go out and have fun more" line. Yet I still liked him, and found him to be a compassionate and intelligent doc, even if that line irritated me. I think he told me once I'd be better off stranded on a tropical island or something.
However, when I came to him with an idea, a concern, or a request for testing or treatment, he listened, was open, thought it was interesting, and helped. I always appreciated that. I think the problem is that ME isn't taught correctly to the medical profession, and they don't understand why we are disabled, in part because it's really hard to explain it.
I was in this position recently with my PCP, whom I really like (current PCP) - and she was trying to nail down what symptoms were debilitating. I realized it's quite difficult to put into words sometimes. Part of it, I think, is that we've been ill so long we don't really know what it feels like to be normal anymore - we've completely forgotten - so we don't notice the differences anymore. We just know we feel lousy and don't want to do much as a result.
We should really think about how to communicate this better to doctors. Maybe you're better at it than I, but really am not good at it. I'm so used to the "norm" being crappy that I don't notice the contrast between that and being healthy - but it's there, and it limits me, and makes me unable to do stuff.
After a few decades you forget what it's like to feel well.
Expecting too much from a PCP is a problem to be sure. As someone in Ontario I realise my Dr's limitations are often imposed one's and I have said so elsewhere.
Lucky for you you are male and have degrees in the sciences. this goes a long way to being believed. I'm not saying that your Dr would certainly treat women without science degrees different but you might be surprised to find that this attitude would not be out of the question.
My husband and I have shared Dr's over the years (we've had a few through moving from place to place). they have all been decent compassionate people. But when we compare notes as regards treatment it's been quite illuminating--not for me but for my husband.
That's what I remember reading as well. The research on which the conclusion that CBT extended life with cancer had the usual flaws of psychological research. More rigorous statistical studies did not support the conclusion that psychological intervention increased lifespan in serious illnesses.I thought most people now thought that the way in which some claimed CBT should be routinely used to help cancer patients was just quackery. It had been claimed that CBT and other psychological interventions could affect life-span (with vague allusions to the mind-body connection, neurology, hormones and the immune system) but that now seems to have been given up on. CBT for cancer related fatigue looked like BS from the studies I read.
(bolding mine)No trial in which survival was chosen as the outcome of interest a priori has demonstrated a survival effect for patients with any type of cancer, when psychotherapy was not confounded with improved medical surveillance or treatment.