Blog: Spoonseeker, "An Offer You Can’t Refuse"

strategist said:
English speakers, please help me out here: what is the word for disrespecting patient autonomy? (when a no is not respected, and patients are pushed or even forced to do things they clearly did not want to do).
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Phrases I’ve encountered which come somewhere close to describing the grotesque, Kafkaesque nature of this relationship concern the doctor or therapist ‘denying the patient’s reality’ or ‘refusing to acknowledge the patient as a reliable witness to their own reality”. At the same time of course they accept the patient’s subsequent, subjective account of their ‘recovery ‘ as irrefutable evidence that it occurred.

Trish said:
I have just read the blog at the start of this thread. It is heartbreaking and shocking that patients with physical illnesses are being treated this way when they are wrongly put in a mental health facility. What happened to listening to the patient. Apparently once you get a mental diagnosis, the staff feel they have the right to 'know better'.

I think Nigel Speight's response is important. He is emphasising the importance of getting a correct diagnosis, which we would all agree with, but the important thing he is saying is 'don't ask for treatment'.

I think what he means by this is, don't ask for ME/CFS treatment, because if you do, you are likely to be set on the path of CBT/GET/treatment refusal going on your record.

Perhaps, at least in the UK at present, it's more productive to seek treatment for individual symptoms - sleep, pain etc. rather than for the overall illness.
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Dr Speight is a hero of course for all the work he has done protecting children from the likes of EC. Nevertheless many patients will find his advice not to seek treatment controversial. I think Trish has provided an excellent interpretation of what he is saying. The trouble is: most patients encountering health professionals about their M.E. for the first time don’t understand this. They haven’t studied on social media. They haven’t a clue about the underlying politics and complexities of the condition. They want to be cured and after all they know they *can* be cured. They’ve read about it in the paper.

So they ask the doctor for more than he or she is able to give and it doesn’t turn out well. How could it? But how could they know? How could they know, for instance, that (with, as far as I know, one exception) the ‘physical’ doctors at the UK CFS clinics don’t do treatment, only diagnosis. The silly things had been expecting to see a doctor who would actually help them! No wonder it all goes wrong...
 
@Spoonseeker
This rings so true. We don ' t have any experts here. Info based on Bristol protocols with not much guidance at all. The insistence of having some form of educational involvement and " resetting hpa axis in 3 days" meant that it all went downhill.
Complete rest would have been my granny' s advice, somehow we are not allowed to do this.
 
This is terrible. And a salutary lesson. We're relocating to the UK this Summer. I'll ask my GP here in Israel, (where my "Chronic Fatigue" was diagnosed after exhaustive testing for many other suspects, and then mercifully ignored), to leave those 2 life-condemning words off my notes.

And if she won't, I'll doctor them. :whistle:

Should I also get rid of Fibromyalgia? I think so. Just leave the Chronic Migraines and Depression, as those are actually treated!

As they say in the comments on that blog post, UK doctors only need to know about my symptoms. If they get wind of one of those terms, I'll never get new symptoms treated again.

SO ANGRY for everyone!
 
when I asked my gp for a referral to a neurologist due to worsening cognitive problems he referred me to l/pool cfs clinic which I already knew from an online post of their patient pamphlet from some years before was run by people contaminated by the bps views on m e / cfs. it was a very good post were the pamphlet was well deconstructed to show how poorly the thinking behind their supposed treatment was . seeing how I believed things had changed for the better in recent years I phoned the clinic requesting an up to date patient pamphlet be sent to me the secretary for the clinic denied the existence of such pamphlets or any other patient documents so I politely told her to cancel my appointment. I do not see the point of wasting my limited energy on trying to educate the wilfully obtuse .after all their only true concern is for their salary and damn the patients their supposed to serve. so far I have suffered no comeback or even acknowledgement of my refusal to attend.
 
Esther12 said:
Reminded me of Derick Wade's response to PACE at the SMC:



http://www.sciencemediacentre.org/e...reatments-for-chronic-fatigue-syndromeme-2-2/
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shouldn't take us off topic from your bolded text, but this quote reminded me of a question i had about pace design. it claims that pacing is bad and that cbt and get are good.

in principle, saying that pacing does not work, taking horton's comment into account, is consistent with pushing a disease model or a large agenda, while saying that cbt and get work is consistent with intending to push those two.

in the trial design, i wonder if there were interests whose goals were slightly divergent. in principle one group might have been more pushing treatments as an end in itself, while another might have been more intending to bury m.e. do we have evidence, from tsg, for example, for or against divergent goals?
 
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Samuel said:
here we have both claims: that pacing is bad and that cbt and get are good.

in principle, saying that pacing does not work, taking horton's comment into account, is consistent with pushing a disease model or a large agenda, while saying that cbt and get work is consistent with intending to push those two.

in the trial design, i wonder if there were interests whose goals were slightly divergent. in principle one group might have been more pushing treatments as an end in itself, while another might have been more intending to bury m.e. do we have evidence, from tsg, for example, for or against divergent goals?
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in your link it mentions nice analysing the pace trial what exactly did they do have a chat about the abstract over coffee .since most intelligent people who actually looked deeper into it saw the flaws in the paper.
 
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