Petition: Remove CBT/GET from NICE guidelines NOW (ALL COUNTRIES can sign)

Signed, now at 1597.

 

bump

 

Unsurprisingly no mention from AfME

eta: now at 1901

 

Can we find any examples? What level of evidence has been required in the past for them to take this action?

 

I think that when it comes to safety, in all walks of life, then Joe Public should not have to prove beyond doubt that something is harmful, before precautionary action is taken. Once reasonable concerns are raised, even in the form of convincing anecdotal evidence, the burden of proof should fall on the purveyors to prove an acceptable level of safety; it really should not fall on recipients to first prove harm.

Edit: Are there legal precedents for this?

 

Well, this is where the PACE trial has been quite well designed (sarcasm), hasn't it? They deliberately asked questions in such a way as to under report PEM and failed to adequately report harms.

In addition, we have lots of anecdotal evidence such as the questionnaires by AfME and MEA and letters to Carol Monaghan, but it seems that the CFS clinics who push GET aren't feeding this back. There should be feedback from them to their local authorities showing the treatments aren't working or are even causing harm. Why aren't they flagging this up?

As far as I know we have the patient surveys, other anecdotal evidence such as letters to MPs and works such as @Tom Kindlon 's report of under reporting of harms and other criticisms of PACE.

I think I PMed you with some references I was given by a consultant in the past. Let me know if yoiu want 'em again.

As far as I know, that's it.

 

Signed. #2389

 

I think you misunderstood what I meant. I mean involving completely different conditions, not ME.

When has NICE acted on these safeguarding caveats in the past? Then, if we find examples, how do these compare? It might be that they’ve never actually responded to safeguarding issues in this way or it might be that they withdraw treatments before a review quite frequently. Quite possibly it always involves drugs and placebo controlled trials showing the drug arm causes harm.

 

2521 signed

next target 5000

 

They have added warnings when drugs have been labelled unsafe, I think. I'll see if I can find any examples.

 

I wonder about the Yellow Card system. Why does it not apply to psychosocial therapies?

http://sallyjustme.blogspot.co.uk/2018/02/yellow-cards-psycho-social-therapies.html

 

I haven't looked but the current revelations about use of vaginal mesh implants is one to watch and see what they do. The guidelines appear to have been done last year:

https://www.nice.org.uk/guidance/ipg599/chapter/3-The-procedure

The guidelines for this are not due to be reviewed until 2020 but given the number of incidences of people now suing the NHS they might have to take earlier action.

 

Not sure if this is relevant or not (drug interactions rather than contra-indications), but in case it is:

https://bnf.nice.org.uk/interaction/doxycycline-2.html

Note that quite a few of the entries simply cite evidence as being 'anecdotal', as per:



I've included it because it does seem to show NICE providing clear drug treatment safety advice, based on anecdotal evidence alone in some cases. Why should the same not apply to GET, which is still a physical treatment even if not a drug?

Edit: Would this count as a valid precedent?

 

if you do a search on 'nice guidelines exceptional review' it comes up with loads. (I haven't looked through them).

 

So if there’s a concern it triggers a review process? But we’re already in a review process so we can’t ask for that.

 

Surely NICE could remind people that current Guidelines on CBT and GET are "optional", not mandatory, ie with the patient's (or family for youngsters) agreement and should ONLY be suggested for those at the milder end of the severity spectrum.

They should NEVER be used as a threat of forced hospitalisation/intensive inpatient treatment/sectioning.

If Prof Baker was as shocked as he said he was, by the distorted use of the current Guidelines then surely this is the absolute minimum that should be put on their website/sent to GPs/relevant Consultants/Royal Colleges/CFS Clinics etc and publicised by all ME charities and organisations that are patient-centred.

 

It sounds to me as if the original committee had a majority of people pushing for CBT/GET, but a vocal minority unable to support them. So they came up with a compromise of putting it down and making it subject to patients agreeing to it. Little did the minority realize that 120 lines on CBT and GET with an opt-out would be taken as a firm statement that ME was primarily psychological in nature, and that opting out would be seen as refusing treatment.

 

My MP has written today that he has signed the petition.