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

[Peter T]

That might be a good approach. Split the issues and timing of raising them.

Not with it enough to look back through this thread but someone earlier suggested that the issues arround the individuals with clear financial conflicts of interest (eg marketing training re MUS), etc need specifically addressing, as NICE policies should exclude them from sitting. This is a different proceedural point to the overall concerns about bias and it was suggested that mixing the two together could cloud the issue.

 

[Skycloud]

I agree, that we should be raising the conflicts of interest in specific individuals now, where there are also clear arguements showing NICE's own policies are being breached,

Any one willing to take on responsibility for drafting this?

I agree an S4ME group letter would be a good idea.

 

[Peter T]

Any one willing to take on responsibility for drafting this?

I agree an S4ME group letter would be a good idea.

I had a surprise birthday party yesterday, that was great, but ... ... So do not at present have the intellectual capacity, but if no one takes it on I will later (after some more sleep) go through this thread to pick out the relevant information.

 

[Sasha]

In haste - #MEAction have come up with something but I haven't had time to read the form-letter provided:

https://www.meaction.net/2018/11/03/action-needed-nice-appoints-committee-rife-with-bias/

 

[Peter T]

In haste - #MEAction have come up with something but I haven't had time to read the form-letter provided:

https://www.meaction.net/2018/11/03/action-needed-nice-appoints-committee-rife-with-bias/

Here is the body of the MEAction suggested draft for people to adapt to send to NICE

I have no confidence in the committee’s ability to scrutinise the evidence put before them. NICE has a duty to act in the best interest of patients. The professional membership of this committee must change.

This committee is biased.

The committee is markedly skewed towards those whose work stems from a single model. For decades the field of ME in the UK has been dominated by a small group who promote a psychosocial model of ME, which is at odds with the international consensus of experts and biomedical evidence on ME. The continuing harm from these treatments is real: the majority of patients report deterioration during the treatment based on this model. Parents of children with ME live in fear of being referred to social services and having these treatments forced on their children. At least one appointee has previously attempted to take this action.

Committee members exhibit conflicts of interest, according to NICE policy.

The NICE policy on conflicts of interest appears to have been unevenly applied. I am especially concerned that expert ME nurses, doctors and scientists have been turned down from the committee. However, according to NICE’s own policy documents, the current appointees exhibit conflicts of interests that include, but aren’t limited to:

- Being actively involved in ongoing trials
- Advocating for lobbying groups
- Publishing clear opinions about the matters under consideration
- Holding professional positions that depend upon one model of this illness being upheld throughout the guideline.

We deserve better.

NICE needs to introduce independent clinicians and professionals from other fields into the process. Without this, and without the excluded ME experts, the guideline is destined to be a foregone conclusion.

The NICE guidelines influence health policy worldwide. Rewriting these guidelines is an opportunity to vastly improve the standard of care for millions of people with ME. Patients deserve guidelines based on the best scientific evidence. This committee is not up to the task.

I urge you to make the bold, decisive changes to the committee membership necessary to end the avoidable suffering.

Although very relevant, the MEAction approach allows NICE to potentially mix the issues of bias and with conflicts of interest as defined by themselves. The feeling of those commenting here seems to lean towards dividing the two, trying to deal with formal conflicts of interest now, but addressing the overall bias when the full committee is announced.

 

[MEMarge]

Posts relating to the drafting of a letter to NICE about conflicts of interest in the Guideline appointments have been moved to this thread: https://www.s4me.info/threads/draft...-interest-in-the-guideline-appointments.6519/


Not sure that Joanne Bond Kendall has a PhD/should have title of Dr. No mention in https://web.archive.org/web/20181027111941/https://apcp.csp.org.uk/content/joanne-bond-kendall

 

[ME/CFS Skeptic]

Any one willing to take on responsibility for drafting this?

A first draft of a letter to NICE regarding the conflict of interest of Murphy and Bond-Kendall has allready been written.

Further discussion has been moved to this thread:
https://www.s4me.info/threads/draft...-interest-in-the-guideline-appointments.6519/

 

[JaimeS]

A first draft of a letter to NICE regarding the conflict of interest of Murphy and Bond-Kendall has allready been written.

Further discussion has been moved to this thread:
https://www.s4me.info/threads/draft...-interest-in-the-guideline-appointments.6519/

Added grammary edits.

 

[MSEsperanza]

With regard to the BPS-biased committee members, I just wondered who will actually be in charge of screening and assessing the material on which the committee will base their discussions and decisions?

The NICE manual mentions diverse people who seem not to be supervised by the committee:

The evidence review team (comprising an information specialist, systematic reviewer and for most guidelines an economist) identifies, reviews and summarises the evidence, and undertakes economic analyses. Sometimes developers may commission other organisations to review the evidence.

The information specialist identifies relevant literature to answer the review questions (see chapter 5), creates databases to manage the search results and keeps a log of search results and strategies.

The systematic reviewer critically appraises the evidence, distils it into evidence tables and writes brief summaries (including GRADE tables, GRADE-CERQual or evidence statements, if used) for presentation to the committee (see chapter 6). The reviewer also summarises the main issues with the evidence for the committee and contributes to their discussions.

https://www.nice.org.uk/process/pmg...overview#main-stages-of-guideline-development

https://www.nice.org.uk/process/pmg20/chapter/reviewing-research-evidence

Do we have to consider this at this stage regarding how to ensure that those people will do their jobs properly?

 

[Jonathan Edwards]

Do we have to consider this at this stage regarding how to ensure that those people will do their jobs properly?

I do not think this is a major concern. Peter barry assured people present at the scoping meet that in this case whatever the committee members thought needed considering should be included. I have reason to think he is sincere about this. There will be members of the committee who may want to bring in published material that has not been identified by the technical staff.

I will be acting as an expert witness for the committee - I have now received an official invitation and signed my forms. I will also try to ensure that relevant material is brought to members' attention.

 

[Amw66]

I do not think this is a major concern. Peter barry assured people present at the scoping meet that in this case whatever the committee members thought needed considering should be included. I have reason to think he is sincere about this. There will be members of the committee who may want to bring in published material that has not been identified by the technical staff.

I will be acting as an expert witness for the committee - I have now received an official invitation and signed my forms. I will also try to ensure that relevant material is brought to members' attention.

Great news thank you

 

[Suffolkres]

I do not think this is a major concern. Peter barry assured people present at the scoping meet that in this case whatever the committee members thought needed considering should be included. I have reason to think he is sincere about this. There will be members of the committee who may want to bring in published material that has not been identified by the technical staff.

I will be acting as an expert witness for the committee - I have now received an official invitation and signed my forms. I will also try to ensure that relevant material is brought to members' attention.

So it was definitely worth the phone call to the RCP lady on the day of the interviews it seems..... Great news!

 

[Jonathan Edwards]

So it was definitely worth the phone call to the RCP lady on the day of the interviews it seems..... Great news!

Yes, thank you, @Suffolkres.

It seems that my application had not been exactly forgotten but that phone call precipitated a usual dialogue that helped a lot in reaching a sensible outcome.

 

[Daisybell]

Thank you Jonathan- I’m sure I speak for us all when I say that your involvement is greatly appreciated. I’ve no doubt you will make a difference.
I’m so grateful for your ongoing interest and tenacity!

 

[Sasha]

I will be acting as an expert witness for the committee - I have now received an official invitation and signed my forms. I will also try to ensure that relevant material is brought to members' attention.

Fantastic news (though it would have been even more fantastic if they had actually appointed you to the committee).

What determines when or how often you get called in to give evidence/opinion?

 

[JemPD]

I do not think this is a major concern. Peter barry assured people present at the scoping meet that in this case whatever the committee members thought needed considering should be included. I have reason to think he is sincere about this. There will be members of the committee who may want to bring in published material that has not been identified by the technical staff.

I will be acting as an expert witness for the committee - I have now received an official invitation and signed my forms. I will also try to ensure that relevant material is brought to members' attention.

Oh thank God!!! at least there will be one non-lay sensible voice being heard!

 

[Jonathan Edwards]

Fantastic news (though it would have been even more fantastic if they had actually appointed you to the committee).

What determines when or how often you get called in to give evidence/opinion?

I think this may be the most useful arrangement.

I have no idea exactly what I will be asked to do.

Oh thank God!!! at least there will be one non-lay sensible voice being heard!

There will be a few more than that.

 

[Hoopoe]

When will the review take place?

 

[Jonathan Edwards]

When will the review take place?

Over the period, roughly, Feb 2019 - Sep 2020 I would guess, via a series of committee meetings. What I do not know is whether the tech team have already been working on literature searches or whether nothing starts until the committee is appointed.

 

[Russell Fleming]

More news from NICE about other committee appointments expected tomorrow (Thurs. 8th November). Anyone working on, or sending, letters might want to wait until then.