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

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.

 

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.

 

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.

 

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.

Exactly. I think they worked really hard to have a "balanced" committee.

And thank you. We had a really lovely day.

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.

 

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.

 

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.)

 

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.

 

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.

 

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.

 

Thank you! I'm not sure if anyone can see this, but this is us just after the ceremony:

 

Thank you, Trish!

 

Congratulations, Adam

The image is not showing up for me? No error message, just an empty IMG tag.

 

It might be a FB thing?

I've gone back and set it as an attachment.

 

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

 

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.

 

Congrats Adam!

And thanks so much Adam and Dave for the video explaining it all, very interesting, so much work put into the guidelines, so special thanks again to all the PWME in the committee.

 

Congratulations @adambeyoncelowe, you both look so happy. Thank you for your hard work for the guidelines. I bet it takes a toll on the patients on the committee, physically and otherwise.