NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

Just caught up with this thread. It’s good to know that we’ve got at least two level headed members of S4ME to fight the good fight.

Thank you @adambeyoncelowe and @Keela Too in advance for this commitment. Look after yourselves ....this is going to be draining, not least of it trying to keep everyone happy. I’ve made a note to myself to be extra considerate of this.

As far as the rest of it, I’m waiting and seeing. At work you often invite the pigheaded difficult one to a group so that they can’t say they weren’t there and even if they are difficult, they end up having to endorse what’s been decided by the fact that majority rules and they were there. Hopefully this is why we have the BPS contingent? (He says very optimistically for a change).

I just hope for a few more objective people. I think I would like a few more people who are just good at looking at scientific evidence from another discipline, to hopefully cut through the politics.

 

I hope you are right. I am in the US and the distinct definition for ME has been excluded repeatedly by our CDC, the rumblings sound like NICE is following suit.

 

Evidently not endorsing medical torture was a disqualifier.

 

Except we don't know it's THE distinct definition, all we have are people expressing an opinion that it is without it being scientifically proven. And the only rumblings that I've heard is that NICE will look at all the available evidence in order to determine an appropriate clinical diagnosis.

 

If they've been working in CFS centres but have failed to speak out about the problems with things like PACE, the way patients were being smeared, then they shouldn't be given positions of authority like this.

I think that we deserve better than people who will quietly make their money from a system that mistreats patients and spins evidence. As it is, it seems like people included on this committee have been actively making things worse.

 

I was asked about my personal experience. I said that GET doesn’t work and backed it up with the survey that we had already submitted to Peter Barry (I am also a stakeholder representative of a national group of parents of children with ME/CFS). I said that I came to the conclusion that the PACE trial was flawed and I could explain why. That the experience of our children and young people with CBT was that they were being told that this was all psychological and I disagree with it.
I was then told that

I asked this question during the interview (not PACE specifically but about evidence). Every NICE committee has a Technical Team that looks at evidence and only the evidence that makes it through the Technical Team is then considered by the committee.

 

Do we know who is on this team?

 

So this would imply that the fact that you understood how to interpret science in a technically correct way was seen as enough of a 'conflict of interest' to not allow you to take part here? Did I miss something?
This is literally not what the term 'CoI' means.

 

Don't forget that the interviews are organised by the National Guideline Development Centre RCP........ not NICE,... so do they have some of their own rules...?
so who did the interviewing (those that were interviewed should know?).

 

Perhaps they were thinking more "Prejudicial Interest" rather than COI,

i.e. come to meeting with an open mind not a preconceived view?

This is required of elected members of a committee in local government and planning in my experience.

https://en.wikipedia.org/wiki/Prejudicial_interest
In UK local authority politics, the term prejudicial interest is used to describe a particular type of conflict of interest involving councillors. When a councillor has an interest in a topic under debate that may affect their ability to fairly and objectively consider the subject, he or she is said to have a prejudicial interest. An example would be a councillor discussing a planning application for a company in which he or she has an interest. The councillor has an interest in the plans being approved and is therefore considered to have a "prejudicial interest".

The Standards Board for England is the body responsible for investigating allegations of undeclared prejudicial interests. It is the responsibility of the councillor to declare their interest prior to discussions or votes and, once declared, they must leave the room for the duration of the discussion or vote.

Anyone can make an allegation of an undeclared prejudicial interest although the Standards Board for England can only investigate reactively rather than proactively - i.e. they cannot intervene to stop an offence from taking place, only investigate the offence once it has taken place.

 

It seems to me that this might be even more important than who is on the committee?

 

Dr Norma O'Flynn certainly gave the impression at the Stakeholder meeting that the lay members would be selected by "them" (the RCP National guideline centre NGC) . They wanted people, she said, who would be able to examine the evidence with a fresh eye and who had not already made up their mind.

They were also there, not to represent any group as a rep but to bring their own experience to the table.

 

Is that the same Norma O'Flynn who works at the same GP Surgery as Mrs Wessely?

 

Looks like it, yeah:

https://uk.linkedin.com/in/norma-o-flynn-72b2932b

I wonder what opinions on CBT/GET she thinks should be viewed as COIs.

 

I know as yet the NICE guideline committee have of course not chosen a clinical criteria/definition (an existing one or perhaps develop their own version?) that they will include in the updated guidelines. However, I will say if they choose to follow the CDC and also choose the IOM SEID definition as the current diagnostic criteria (CDC as we know have listed all other criteria as historical) as the CDC have done, then I will be bitterly disappponted.

I know there have been threads on here discussing the SEID diagnostic criteria, now being referred to as ME/CFS by the CDC, but my view remains the IOM core symptom complex (fatigue, unrefreshing sleep, post-exertional malaise, with either vague cognitive symptoms or OI) can be found in other chronic illnesses and again will not give the medical establishment a sufficient description of how the illness presents.

I know our experience of the illness contributes to our thoughts on the core features of the illness. I am always surprised though by any clinical criteria, SEID being one, that does not include as a core feature the need for people with this illness to limit sensory input just as much as exertion to avoid worsening of all symptoms.

 

How many other chronic illnesses, in your view, have this as a symptom?

 

Not sure it has been posted on this thread already, I spotted in the MEA's members magazine that Dr Shepherd applied to join the committee.