NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

As I see it this call for evidence is not NICE asking to send them any study on ME/CFS we find interesting or that we think they should read in formulating the NICE guideline. As I interpret it the scope is quite restricted to: management while the ME/CFS diagnosis is being made, monitoring of ME/CFS patients once the diagnosis is made and information on the experiences of patients who have followed treatment.

Please correct me I'm wrong. But if that's the case I see no need in trying to collect studies outside the scope. I assume these will already be passed on to the GDG. I suspect that the technical team could find few studies on the particular domains listed or in the case of patient experiences that they suspect patient surveys exist they can't easily retrieve using databases. So in those cases, it makes sense to ask for further evidence, for example, unpublished studies, unknown patient surveys etc.

 

Some journal articles are not listed in some databases such as PubMed, so can be missed in searches.

It depends what algorithms they are using. A lot of systematic reviews just focus on clinical trials so can miss other types of evidence. Also some publication types like correspondence often gets ignored in systematic reviews, unfortunately.

 

Here's something frustrating that happened with the AHRQ review in the US:


If I recall correctly, the employment data from the PACE Trial wasn't included. They used the WSAS questionnaire data from the initial paper, but not the actual employment data that was published in a separate paper.

 

Yes, that's right. With the caveat that Tom's post is also right (some things get lost, so it doesn't just have to be patient surveys sent in).

 

This is a bit of a worry and part of it all https://onlinelibrary.wiley.com/doi...U0xP2i7rLknzHV7d3L8PpLDbw2tKFdW24F-mGRX8dSfnE

 

We've definitely seen this.

 

https://www.s4me.info/threads/surve...ronic-pain-fatigue-2019-antcliff-et-al.10911/

 

And this.

 

I assume also this?

https://s4me.info/threads/the-norwegian-me-associations-report-on-severe-me.10140/

 

Had to w/t my Research Nurse at CureME today, so I asked that he check that someone there will be replying to the stakeholder letter with details of all their published research.

 

I had clocked it but it's good to be reminded. Our next meeting is on Thursday, so it's good to be refreshed!

Thank you.

 

Unfortunately but predictably

https://www.bps.org.uk/news-and-pol...ephalopathychronic-fatigue-syndrome-diagnosis

 

I sincerely hope the quality of any evidence will be properly scrutinised this time around, taking proper independent advice on that wherever they need to. Blindly assuming 'evidence' to be valid just because that's what a paper calls it, or because a Cochrane review 'endorses' it, should be totally ruled out. The BPS crowd may have all sorts of trials alleging 'evidence', but we all know it fails to stand up to proper scrutiny. If NICE fails to adequately address that issue this time around, then that will be deeply shameful.

 

I am putting together a submission for one of the registered stakeholders. Does anyone know if there is a template which we can work from for the document submission?

 

Not that I've seen.

ETA: See below.

 

I see Tom Kindlon's submission has a nice table format. I have asked if he can lend me a template!

 

That template is available on the NICE website, all submissions have to follow it.

It says:

 

Thank you!

 

They have now opened up the Oxford Brooks study with regards to children https://www.actionforme.org.uk/children-and-young-people/nice-guideline-focus-group/