Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

[slysaint]

Why are there more psychiatrists in the review group of experts than were on the original guideline group?

no concerns have ever been expressed by patients attending the clinic about the diagnostic criteria used in CG53

Time for NICE (and the NHS) to stop mincing their words and come out and say that they regard ME/CFS as psychological; then see how patients react.

 

[Sbag]

In regards to my comment above, reading the last file, commentator three sounds like Crawley, as to what criteria to use for their research etc broad behavioral therapies if we want To be strict let's add Fukuda in?
I agree commentator six is likely a neurologist.
Is a four out of six no need to review vote really good enough, I'd expected it to be overwhelming. I'd also expected the decision to be reached through some type of expert discussion or board meeting where people could be challenged and points debated rather than a few opinions just sought and then non experts making a decision.

NICE will be having a meeting to discuss it and the findings of the experts will be used in that meeting. The result from the experts is not the final say but is used by the rest of the committee to make a decision (so they told me). The meeting is internal only though as this is not an actual review or consultation but just a decision on whether a review is necessary.
There is a NICE Board meeting on the 20th September though in Birmingham and there is a question time session held before the main Board meeting. "This session offers a great opportunity for you to raise any questions you have about our work and is open to the general public."

 

[Mrs Sowester]

NICE can't fail to notice the gaping chasm between the views of the 'experts' and those of patients, charities and entire rest of the world.
The question is whether they decide to do anything about it.

 

[Esther12]

I don't know if this matters, but I thought I'd mention that NICE have tried to use concern about online 'abuse' to avoid releasing some important information.

I don't think that criticism of someone in a position of medical authority who makes claims unsupported by the evidence should be seen as abuse... but who knows what's acceptable according to the values of the UK Establishment. Personally, I reckon it's worth being a bit cautious and thinking more than normal about the possible costs/benefits of what one posts.

Also, while I thought that there were some problems with the patient representative's submission, and there's no need to pretend it was perfect, I'll try to be kindly on their role - they were in such a difficult position, and don't have the advantages of the sort of support provided to those working in academia, and in doesn't look like NICE provided assistance to help them express their concerns in a way that would be most effective. If I was them, I know that I'd have felt under a lot of pressure to try to make things better for other patients, while being in a very difficult spot with NICE. It's really not fair that patients are having to do so much to try to clean up the mess made by shoddy researchers!

 

[Mark Vink]

I don't think so, I think this is to capitalise on FITNET. They do not believe phase 3 will show anything. If it does none of this is relevant anyway. NICE guidelines do not survive the stampede of biological facts for long. They held out against anti-TNF and rituximab for RA for a few months each but they could not keep up stonewalling. The problem at the moment is that there are no biological facts to get them with - not the sort that are needed. A positive phase 3 would overturn that completely.

I don't think so, I think this is to capitalise on FITNET. They do not believe phase 3 will show anything. If it does none of this is relevant anyway. NICE guidelines do not survive the stampede of biological facts for long. They held out against anti-TNF and rituximab for RA for a few months each but they could not keep up stonewalling. The problem at the moment is that there are no biological facts to get them with - not the sort that are needed. A positive phase 3 would overturn that completely.

Maybe someone should point out the truth about FITNET to do them http://www.mdpi.com/2076-328X/7/3/52/htm

 

[Barry53]

Maybe someone should point out the truth about FITNET to do them http://www.mdpi.com/2076-328X/7/3/52/htm

They seem to be highly resistant to any kind of enlightenment.

 

[Barry53]

From Rosa's story ...

... as I had been told that that pain wasn’t a big deal ...

That of course can be a Yes or a No. Pain is one of the body's key warning mechanisms. In some circumstances it can pay to not take the warning too seriously. And in other cases it can be a disaster to ignore the warning.

The medical profession always presumes the former for PwME, which is a very high risk strategy they seem happy to take of behalf of PwME. It's a bit like someone playing Russian roulette, but pointing the gun at you not themselves.

 

[TiredSam]

The medical profession always presumes the former for PwME, which is a very high risk strategy they seem happy to take of behalf of PwME. It's a bit like someone playing Russian roulette, but pointing the gun at you not themselves.

That's one of my main arguments for not taking anyone's advice when it comes to my M.E. - who pays the price if they're wrong?

 

[Cinders66]

NICE shouldn't even be accepting views from Drs who regard this illness as emotionally driven. The fact they are says it all about their own underlying prejudice to CFS. The IOM report was based on a year review, if it's just dismisssed by uk Drs like this and NIce Accept that, their process is so flawed it's unacceptable. I'm shocked by how bad things are there. The starting point has to be this is serious, systemic disease, then they consult based on this to make a fitting guideline. There's wasn't even attempt to "balance" the pro CBT model lot vs pro biological model lot, although days of giving the CBT brigade equal weight should be over.

 

[Barry53]

NICE shouldn't even be accepting views from Drs who regard this illness as emotionally driven.

That is a really good point. How do you get objective (ha!) expert opinions when all the supposed experts, and most of the medical community, are so highly biased anyway? NICE need to take a few good steps back and consider their own objectivity, and "expert selection" bias.

 

[Goldfishliveson]

I've just been asked to post these documents up, and it sounds like David Tuller got them via an FOI request, and is planning to publish a blog on them later this afternoon. It looks like it will take a few posts to get everything uploaded, so bear with me!

Looks like there's some annoying stuff in there.

edit: Here is Tuller's blog http://www.virology.ws/2017/09/11/trial-by-error-the-nice-topic-expert-reports/

Iam Amanda Rankin who wrote the document submitted by the patient expert . Seeing as they didn't remove my first name , thought I'd just go public .

 

[Esther12]

Iam Amanda Rankin who wrote the document submitted by the patient expert . Seeing as they didn't remove my first name , thought I'd just go public .

Hi Amanda - welcome (back?) to the forums. There were a few places where I'd have made edits to your submission, but it also included a huge amount of useful information. Thanks for all of your work on this.

 

[Keela Too]

Iam Amanda Rankin who wrote the document submitted by the patient expert . Seeing as they didn't remove my first name , thought I'd just go public .

Hi Amanda - I appreciate you volunteering yourself as a patient expert, and that you have identified yourself now as the patient expert. Thank you.

Are you able to comment on how/when you were selected?
And whether NICE are likely to consult more than one patient expert as the re-drafting of the new guideline gets underway?

 

[Mithriel]

It is not easy being a patient representative. you show more courage than those poor researchers who are too terrified of us to give their names

 

[Goldfishliveson]

I've just been asked to post these documents up, and it sounds like David Tuller got them via an FOI request, and is planning to publish a blog on them later this afternoon. It looks like it will take a few posts to get everything uploaded, so bear with me!

Looks like there's some annoying stuff in there.

edit: Here is Tuller's blog http://www.virology.ws/2017/09/11/trial-by-error-the-nice-topic-expert-reports/

Just to be clear . I am not the patient expert . I submitted what I wrote to them as they were asking for patients input . And what I wrote is the larger document which they submitted . I also asked Rosa if I could pass on her blog and she said yes . That is why my first name is mentioned in the other attachment that also mentions Rosa .

 

[Goldfishliveson]

Hi Amanda - I appreciate you volunteering yourself as a patient expert, and that you have identified yourself now as the patient expert. Thank you.

Are you able to comment on how/when you were selected?
And whether NICE are likely to consult more than one patient expert as the re-drafting of the new guideline gets underway?

Hi Amanda - I appreciate you volunteering yourself as a patient expert, and that you have identified yourself now as the patient expert. Thank you.

Are you able to comment on how/when you were selected?
And whether NICE are likely to consult more than one patient expert as the re-drafting of the new guideline gets underway?

I am not the patient expert . I submitted the attachment that was provided by the patient expert as they were asking for info from patients

 

[Goldfishliveson]

It is not easy being a patient representative. you show more courage than those poor researchers who are too terrified of us to give their names

It is not easy being a patient representative. you show more courage than those poor researchers who are too terrified of us to give their names

I am not the patient expert . I submitted the document attachment that the patient expert provided .

 

[trishrhymes]

Thanks for clarifying. It's all very confusing!

 

[Goldfishliveson]

Hi Amanda - welcome (back?) to the forums. There were a few places where I'd have made edits to your submission, but it also included a huge amount of useful information. Thanks for all of your work on this.[/QUOTE

I am not the patient expert . I submitted the large attachment that they provided , as I was informed by another patient that they were asking for input .

 

[Goldfishliveson]

Thanks for clarifying. It's all very confusing!

Individuals can submit input through stakeholders , and so I guess that is why they were asking if anyone wanted to provide an input , which I was informed about , and which other individuals did too . From seeing Tullers post in here , I saw that what I had provided was submitted , and that my first name was mentioned on the other submission attachment, regarding Rosa's blog .