Discussion in 'Petitions' started by Sly Saint, Feb 23, 2018.
Brilliant! Well done.
That's the very first thing said in the CFS guidelines under Management:
But it gets ignored, just like the recommendation to use heart rate monitors with GET gets ignored. When NICE creates a guideline which makes a disease sound psychosomatic, they are sending very mixed messages with those warnings. Sure, patients have a right to choose, but not if they're incapable of making rational decisions, which is exactly what the rest of the guideline implies. Why take safety precautions with GET if symptoms are not reflective of an actual physical illness?
This is why a compromise between "it's a real disease" and "here's some psychosomatic treatments for it" is such an abject failure. It doesn't make sense, so doctors focus on the treatments, and the disease is then seen as psychosomatic. CBT/GET need to go, full stop, and every other psychosomatic insinuation.
For the PACE trial, the cognitive-behavioural interventions were not intended as adjunctive therapies to assist patients to adjust to their health problems, or to address secondary complications or comorbid disorders, but were intended as primary treatments to treat the presumed perpetuating factors and ultimately to reverse the illness itself. Thus, for an illness that is widely considered to be a biomedical illness, with many catalogued immunological and neurological abnormalities [13-22], we are presented with a psychotherapy which is intended to reverse the illness itself.
Despite the hyperbole and misrepresentation in the media reporting, the outcomes of the PACE trial do not support the fear-avoidance-deconditioning hypothesis in CFS/ME.
CBT was designed to reverse the illness, by addressing a hypothetical maladaptive fear-avoidance response to symptoms. If the illness itself had been reversed and successfully treated, then one would expect to see improvements in objectively measured outcomes of disability. But there were no improvements in any of the objective measures (e.g. a six minute walking distance test and a step test) after treatment with CBT in the PACE trial. So it seems clear that CBT failed to reverse the illness, demonstrating that the fear-avoidance hypothesis was not supported by the outcomes of the PACE trial project.
Furthermore, Chalder et al. acknowledge that CBT and GET failed to improve deconditioning (fitness assessed by a step test), and that the deconditioning hypothesis, upon which the PACE trial was based, was not supported by the outcomes: “Fitness measures did not mediate the effects of the treatments.” 
Because of the potentially severe adverse reaction to exertion experienced by CFS/ME patients, cognitive-behavioural therapies, including exercise therapy, are not necessarily benign interventions."
This needs to be hammered home.
If patients want talking therapy for anxiety, fine. If they want help in understanding about pacing ok,
but CBT/GET as they stand are not treatments for ME and should therefore not be in the guidelines.
@Gary Burgess please could you 'advertise' this if you haven't already. Ta Sly.
For sure. Thank you for flagging it up.
question was asked in Parliament on 20th Feb:
Paul Blomfield Shadow Minister (Exiting the European Union)
To ask the Secretary of State for Health and Social Care, what assessment has been made of the potential merits of removing cognitive behavioural therapy and graded exercise therapy as treatments for ME from the current NICE guidelines.
for reply see:
petition now at 2828
Numbers are a bit stagnant. Have just posted it to a local group.
Can we do any more? Would hate Nice to think they can get away with leaving it till 2020, or even leaving it on an ongoing basis. That decision hasn't been made.
How much publicity is this getting? My impression is that I see Dr Myhill's petition a lot but not this one.
EDIT: thanks @Gary Burgess for agreeing to flag it up, and @Sly Saint for keeping us up to date with numbers.
I don't think the choice of photo helps; plus I don't think it is that obvious (unless people read the blurb or go to the link) what it is about.........
anyone contacted the #stopGET lot?
eta: still nothing from AfME
Following the Forward ME meeting earlier this month, the Countess of Mar is going to write to Mark Baker, Director of the NICE Guidelines centre,
The minutes also note that,
The more we can keep the pressure up, the more likely Mark Baker and NICE will feel compelled to act. They can't say they don't know that GET is causing harm anymore.
Re: nothing from Action for ME
I posted the GET petition on their fb page this afternoon. How long it remains- who knows?
@Action for M.E. ?
ha; I had no idea they had joined. Thanks for the heads up.
Joined along with @Gary Burgess then. OK, would be good if we can get something positive from this for PwME.
No idea whether there was any connection. Gary has not said he is involved in any way with AfME.
Errrm........All I have done was post the GET petition on their fb page. What am I missing? What might they have joined? Along with @Gary Burgess? @Barry. Am very perplexed.
No connection whatsoever. The only charity I have a tenuous link with is the ME Association in so far as I signed up to get their magazine.
Some crossed wires on my part I would think then, from this post:
And importantly, for me there was not going to be a problem if there was a connection, just an opportunity for more debate.
can someone on FB post on Jen Breas FB page; ditto her twitter feed, and #MEActions twitter FB (I did email them).
heres the link again :
total now at 2980
Just checked AfME fb page and post I placed on Sat with link to vote is prominently displayed........
Would be great if it had some likes. Currently none.
The photo is from the person who posted the poll's book .
Not the greatest idea, in my opinion (photo / book association, not the poll itself!)
Separate names with a comma.