Format of NICE stakeholder meeting?

Agree.

 

Do we know how a patient rep gets chosen for the guideline development group?

 

I'm strongly in favour of supporting the needs of children and the most severe raised by @Amw66 and @Keela Too . They're our most vulnerable and should be able to count on the rest of us.

 

It will probably be difficult for them to achieve much in an introductory meeting like this, but hopefully some worthwhile nudging can be done. Thanks to all taking part.

 

Remember that physiotherapists, psychotherapists and psychiatrists are also 'stakeholders' here. My feeling is that what should really happen is that a NICE committee free of stakeholders should make a decision based on the evidence. It is a dire reflection of the commercialisation of healthcare that everything is now considered in terms of stakeholders, with the tacit implication that this first and foremost means the people who are going to make money out the situation. When rituximab was licensed for RA, I , the inventor of the treatment, was not consulted, because I was not making any money out of it. Only the drug company was allowed to provide evidence.

At least it seems that NICE have realised that there is a need for a patient representative on these committees. I take the point about being able to attend but someone like Charles Shepherd is well placed to fill that sort of role and he manages to get to meetings on a regular basis.

I appreciate people's concerns about severe patients and children but my worry is that we do not have any specific evidence relating to these issues, of the sort that guidelines can be based on. Special pleading from patients without evidence makes special pleading from therapists without evidence legitimate too. And I think to a considerable extent the best way to protect vulnerable patients is to remove the inappropriate guidelines about therapist-delivery treatments. These seem to be what legitimises inappropriate care. If there is no guideline for CBT or GET then mumbo-jumbo based inpatient treatment units are not going to get funded by commissioning groups.

And I think it will be very interesting to see how doctors who deal with ME/CFS react if CBT and GET are removed from the guidelines. I can imagine that those without wide angled perspectives will say to themselves 'gosh, why have they been removed'. I think it is important that the answer is 'because it was realised that there was no evidence base' not 'because the patients insisted'.

I know this goes against the grain but spending a lot of time with legal cases, as I do, I appreciate the need to leave decisions to an impartial judge. One always wants to make another point, but then the other people can make another point and it goes on for ever.

 

@Jonathan Edwards

You invited requests for input.
I would be happier that the patient perspective would be put strongly if the person reporting from each table were a patient not the NICE representative.
It is easy for the essence of a discussion to be seen differently by different participants. Let us ensure that the patient voice is strong.

EDIT: crossposted with Jonathan Edwards

 

If the international paediatric primer could be used as an official resource this would be a step forward - whilst consensus documents are a compromise , this is better one, and is wholly different from the UK one.
The removal of GET and CBT for paediatrics too, would be valuable for those that do have ME.
Note - there appears to be a large proportion of adolescents and children with Autism ( specifically aspbergers ) as a comorbid condition - CBT has a detrimental effect to them ( I will try and find some back up for this, I have a friend who is a speech therapist specialising in autism in children who has confirmed this to me)

 

Removal of CBT as per PACE, but supportive CBT OK when applicable, same as it can be for cancer sufferers etc. But absolute clarification that that is what it is.

 

I doubt that CBT is in the guidelines for cancer. I think we should keep things simple.

 

Ahh, OK. I was getting confused by the fact I know for sure that cancer sufferers are offered (often much needed) counselling, but I obviously inferred too much from that.

Nonetheless, is there a legitimate application of supportive CBT re ME? It's been mentioned by quite a lot of others - including CS - that that is the case. My real point is that if people such as Charles are validly saying supportive CBT is OK for ME, then we should not just bake a blanket statement to NICE that "CBT" (tacitly implying any kind) is unacceptable, because we would be undermining each other and scoring an own goal.

 

IMO counselling is fine. CBT to alter perceptions is just plain manipulative.

 

If we do not actually have any evidence then I see no reason for it to be in a guideline. I would personally call supportive counselling supportive counselling. I have no idea what the words 'cognitive behavioural therapy' really mean. All I am proposing to say is that there is no evidence that CBT is effective for ME/CFS so there is no reason to have a guideline recommending it specifically.

 

Anyone at anytime has the right access CBT or supportive counselling for just about anything, there's is no need for it to be named as a specific treatment for anything especially when there's zero evidence it achieves anything.

By attaching it to specific illnesses within a guideline its just going to be misleading for ill informed doctors and patients in terms of the efficacy.

 

At the moment, there's no good evidence that supportive CBT is useful for ME/CFS. I think that having CBT in the guidelines in any way would risk letting things continue as they are.

 

I'm struggling to think of a way in which 'supportive CBT' would be useful to me in 'managing' ME/CFS that would be superior to a mix of (my personal) experience and common sense.