Discussion in 'Action Alerts and Advocacy' started by Orla, Mar 25, 2010.
Ahh - I was so young and innocent then.
I still think I was pretty much bang on with this:
You could be right - I haven't analysed the papers in detail or looked at declared or undeclared interests, or know what Shepherd says.
It is utterly disgraceful, underhand and abusive behaviour taking place here disguised under medical titles such as 'doctor' , 'nurse' and hidden out in the open on hospital grounds.
No doubt there will be a new brand of it now disguised under smiles and friendliness. I wonder about the notes they are taking on patients.
I don't see much practical help for this. In fact the only charity I have seen to help me for this particular issue is:
The grace charity for M.E.
Under there documents section they have 'how saying NO can be positive. This is aimed at empowering those of us who wish to refuse psychological therapy for physical illness.
There is a document to send off to M.P.
There is a hospital booklet.
Someone said bits of it are out of date, it would be good for all M.E. charities to have empowering things like this on i think.
I have heard some people were prevented from trialling out physical treatments whilst on this Liverpool cbt course which just astonished me. Whether its changed now I dont know.
This paper, which was published in a peer-reviewed journal, might be of some use:
Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111.
Full text is available free at: http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx
I have not read all 52 pages yet.
The abstract of under reporting negative effects is not limited to M.E.
This has been going on throughout ALL medicine.
The SAARS was set up so patients can report side effects of medications. I was wondering if this could be applied to CBT/GET.
I am.going to find a link for it.
With these studies on the harm of get/cbt I suppose one must write a covering letter with the relevant bullet points in for a G.P. to read so that the G.P. understands and feels supportive and understanding if a 'NO' and doesn't simply assume it means we are not trying or wanting to be well or are being vexacious !
The other links to videos are unbelievable. I can't watch them yet as I must only take on the negativity it bite sized chunks. How can they be getting it so wrong?
Its SARRS - this little write up on this website gives an understanding in easy to read format of why under reporting of side effects have been occurring.
However what is interesting is that upon taking a drug, if it also does not do what it claims to do - this would be also cause of a SARRS .
I know of no Doctor who is reporting my adverse effects of drugs - ever. This will not be helping patients.
And isn't this just exactly the same as what has been happening with the CBT/GET 'treatments'.
This is something I'm interested in.
I think this is the main link for humans in the UK: http://yellowcard.mhra.gov.uk/
Is there a Data Sheet for C.B.T?
Not exactly sure what you mean but the CBT manuals for patients and therapists that were used in the PACE Trial can be seen at: http://www.pacetrial.org/trialinfo/ (also ones for GET).
I told a doctor of an adverse drug effect once. He looked up the list of known effects, then said it wasn't on the list so couldn't be due to the drug!
I was just wondering if anyone knows if this is still the same?
I know that when doing the CBT course one must sign a consent form to say one will not do other treatment .
If this is simply a lifestyle management technique being used here , then why this stipulation .
Put another way - I cant imagine it going down very well with a Cancer diagnoses -
I am delaying treatment so that I can do a CBT course....
Some people are trialling different physical treatments for M.E.
Does anyone remember or have a copy of the agreement that must be signed before undertaking the CBT course prohibiting other forms of treatment ?
Either at this clinic , or others across the country ?
I've read in papers about them trying to get patients to agree to that, but I didn't realise it would involve an actual contract that needs to be signed. I've never seen a copy of one.
No, but I do know of treatment guides (old ones) with that stipulation.
It is my understanding from two different people that part of the agreement to be signed is one only does CBT for the duration of the course.
Now , there maybe reasons for that but I am keen on clarifying this point . I expect CBT courses maybe run differently around the country too.
Are there new guidelines then? If a clinic is found to be using 'old guidelines ' are they breaking any rules ?
Do these new guidelines apply to UK?
Very few rules for. CBT for CFS I'm afraid!
From Tate Mitchell (posted on Co-Cure)
Shall we write a handout for the psychs? No swearing, please...
What, an educational document to correct false illness beliefs in the psychiatric community?
You can also try a Google Site Search
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