David Tuller interviews Adam Lowe about his experience as a lay member of the NICE ME/CFS guideline committee

Trish said:
And yet the Chronic pain and Long Covid guidelines are pretty bad. So I conclude that the ME/CFS guideline was good because the people on the committee did a good job.
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I was going by what @adambeyoncelowe said in the video about development of the ME/CFS guideline, and I trust what he said on that score; I was not talking about the other guidelines. But I do agree, the ME/CFS guideline committee did an extremely good job.
 
Barry said:
Of more recent times anyway, once they started to realise they needed to find something between "a thing of beauty" and "total cr@p".
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They always engaged in double-talk. In the studies, they were more reserved in calling it a "modest" or "moderate" effect. In press conference, Trudie Chalder falsely stated that twice as many in the intervention groups got "back to normal." They hyped the word "recovery." But when criticized, they could say, we wrote it was only a "modest" effect. If that were the case, then why did they insist that every single person who wanted benefits should be forced to go through them? that's a bit much for only a "modest" effect, I think.
 
Lucibee said:
I think YouTube adds closed captions automatically as long as the language settings have been correctly assigned - but that can also be done [by the person who uploaded it] once it has been uploaded. [tagging @dave30th]
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Thanks. someone sent me a transcript I think from youtube (I didn't even know how to upload from zoom to youtube and put it on Virology Blog, so now I do). Hopefully in the next day or two I can edit it to correct weirdnesses (I recently read a transcript about an interview on neurotransmitters and serotonin came out as Sarah Conan) and then post it.
 
Trish said:
I was also very interested to hear how thoroughly the NICE evidence reviewers and committee looked into the argument put to them by the BPS people that the PACE and other trials had included people with PEM - and found that actually none of those trials gave any indication that they were diagnosing PEM correctly, generally equating it with fatigue after exertion.

I hope I remembered that correctly @adambeyoncelowe.
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Yes, that's right. Some of the studies didn't even mention PEM. They just said which criteria they used. Others just referred to fatigue worsened by activity, etc.
Barry said:
Brilliant. Many thanks @adambeyoncelowe and @dave30th.

Really brings out how well NICE managed things, and ensured their rigorously evidence-driven process was beyond reproach - highly worthwhile as things turned out.

Given that perfection is impossible, and compromise inevitable, it really came across how very well the committee did to achieve such a very good compromise on behalf of pwME; could so easily have gone very badly wrong otherwise.

Interesting that the BPS trials' evidence being very low or low quality was not the only issue anyway, given that GET exceeded the £20k cost criterion as well. And so the only way GET could ever have been considered for inclusion would have been if it were considered exceptionally beneficial to patients, which even the BPS people have grudgingly conceded, in as many words, that it most certainly is not. They would presumably have needed to get their evidence quality lifted from very low / low to something more like high / very high - even they might have to accept a tricky one for them ... albeit they likely would not.

And major congratulations on your marriage :). Glad it was a great day for you both.
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Exactly. I think they worked really hard to have a "balanced" committee.

And thank you. We had a really lovely day.
Jonathan Edwards said:
But also those people were on the committee because people like Charles Shepherd and Margaret Mar had convinced Mark Baker that an attempt at an independent committee was needed. Certain people were very obviously bounced, even if some others were not. The decision to have a committee to consider de-recommending GET had been made in effect. For chronic pain and Long Covid I do not think the pressure would have existed.
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Precisely this. In some ways, it was very much an exceptional set-up.

Of course, that means we will need to be vigilant for the next guideline review so it doesn't just go back to how it was.

I think Peter Barry and Ilora Finlay also played a huge part in how things turned out.

They did a lot of their own independent research before we even began and you could see that, as outside observers, they thought the flaws in the BPS theory were self-evident.

It's always heartening when people who have no stake in the matter realise that patients are telling the truth and the research is all, to put it frankly, bollox.
 
Wonko said:
That is upsetting, now I will have to watch it, to find out how at most 12 'sessions' of GET could possibly cost over £20K.

I assume that this could only be justified by having someone who is expensive to hire, like the Pope, to deliver the 'therapy', and not a junior grade 'therapist' following a script.
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The interview was really helpful and reassuring... as at one time, In 2017, I did not know if NICE themselves were part of the problem..or that dark forces within and serving NICE might have been at work.
I am immensely grateful to lay and expert members and chair and vice chair for their skilful handling.

As for the cost analysis process for NG206, and high tariffs for GET CBT- the high costs were identified in The 2007 CG53.
The clinics embracing GET and CBT (like Barts) delivered this to the exclusion of services for their most vulnerable patients, severely affected immobile and children. Their high annual patient tariff (approx £4500), was one of the reasons in 2014, our Suffolk Commissioning and development work rejected 2007 NICE.
No sound business case could.be made for it.
That argument has remained over last 7 years.
 
Suffolkres said:
The interview was really helpful and reassuring... as at one time, In 2017, I did not know if NICE themselves were part of the problem..or that dark forces within and serving NICE might have been at work.
I am immensely grateful to lay and expert members and chair and vice chair for their skilful handling.

As for the cost analysis process for NG206, and high tariffs for GET CBT- the high costs were identified in The 2007 CG53.
The clinics embracing GET and CBT (like Barts) delivered this to the exclusion of services for their most vulnerable patients, severely affected immobile and children. Their high annual patient tariff (approx £4500), was one of the reasons in 2014, our Suffolk Commissioning and development work rejected 2007 NICE.
No sound business case could.be made for it.
That argument has remained over last 7 years.
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So my day-to-day engagements were with Rupert Franklin at NICE (and Simran at the NICE PIP team), Kate Kelley at the NGC/RCP, and the chair and vice chair (Peter and Ilora). All of them were incredibly supportive and professional.

I only chatted to Paul Chrisp and Gill Leng a couple of times, and they did express concern for getting it right, and that they had personal or professional experience if ME/CFS.

But it was my impression that NICE wanted to get it right. They all seemed to have a huge amount of compassion for patients.

The thing to bear in mind is that NICE is a bureaucracy first and foremost. They care very much about process. Once you understand that, you realise that NICE has never had any malice against pwME.

I think it heartening that reasonable people finally looked at what was going on and said, "Hang on a minute. This makes me deeply uncomfortable."

Another thing to bear in mind is that no one at NICE thought that any of the decisions taken by the committee were controversial. They continually told us that the decisions we made were reasonable and had been used in other guidelines. (Just in case the usual suspects start banging on about perversions of the process again.)
 
adambeyoncelowe said:
It's always heartening when people who have no stake in the matter realise that patients are telling the truth
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Its would be nice to think that the extraordinary way our community responded to the challenge will ripple out and change things for the future. Not every patient group is so organised or so well-informed—most probably aren't—but it's a case study on what can be achieved. That can only be a good thing for all parties.
 
adambeyoncelowe said:
So my day-to-day engagements were with Rupert Franklin at NICE (and Simran at the NICE PIP team), Kate Kelley at the NGC/RCP, and the chair and vice chair (Peter and Ilora). All of them were incredibly supportive and professional.

I only chatted to Paul Chrisp and Gill Leng a couple of times, and they did express concern for getting it right, and that they had personal or professional experience if ME/CFS.

But it was my impression that NICE wanted to get it right. They all seemed to have a huge amount of compassion for patients.

The thing to bear in mind is that NICE is a bureaucracy first and foremost. They care very much about process. Once you understand that, you realise that NICE has never had any malice against pwME.

I think it heartening that reasonable people finally looked at what was going on and said, "Hang on a minute. This makes me deeply uncomfortable."

Another thing to bear in mind is that no one at NICE thought that any of the decisions taken by the committee were controversial. They continually told us that the decisions we made were reasonable and had been used in other guidelines. (Just in case the usual suspects start banging on about perversions of the process again.)
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Do you think NICE will have gained any insights from this, with a view to possibly better handling of future guideline development? Selections of future committees? Etc?

One thing is for sure: For any future guidelines that even have a sniff of psychiatric involvement, they will move heaven and earth to try and prevent such an objective development process from hereon.
 
Barry said:
Do you think NICE will have gained any insights from this, with a view to possibly better handling of future guideline development? Selections of future committees? Etc?

One thing is for sure: For any future guidelines that even have a sniff of psychiatric involvement, they will move heaven and earth to try and prevent such an objective development process from hereon.
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Probably. I think lots of people changed their minds about a lot of things during that process. We ended on very positive terms with NICE and the NGC, so I think they will remember those positive relationships with the lay members. Sometimes, that's all it takes.
 
adambeyoncelowe said:
Thank you! I'm not sure if anyone can see this, but this is us just after the ceremony:

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Congratulations, Adam :hug::heart:

The image is not showing up for me? No error message, just an empty IMG tag.
 
mango said:
Thank you so much! Really really lovely photo :) Just loving seeing people happy, enjoying themselves and life -- especially nowadays..! Thank you for sharing this with us :) Wishing you both infinite happiness :heart:
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Awww, shucks, that's lovely! Thank you!

I've just rewatched the video and there was so much more I could've said, but not enough time in the world. But I think we did a good job.
 
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