NICE announces next steps in updating its guideline on ME/CFS

[Webdog]

This will also have an impact in the United States. Healthwise, a major medical content provider which continues to recommend GET and CBT, has stated they are watching NICE guidelines closely.

Healthwise apparently considers NICE just as authoritative as the CDC.

 

[duncan]

These days, @Webdog , with the rate of flu deaths for kids at an all time high, and increasing coverage of the Lyme debacle grabbing the spotlight, CDC repute may be not something NICE wants to hang its hat on.

 

[Esther12]

"Additionally, we will include a lay member on the recruitment panel for the chair of the guideline committee.”

I wonder how one applies for that. I thought that they were already underway with that process anyway? Weren't applications for the chair due in at the end of January?

 

[Valentijn]

"Additionally, we will include a lay member on the recruitment panel for the chair of the guideline committee.”

I wonder how one applies for that. I thought that they were already underway with that process anyway? Weren't applications for the chair due in at the end of January?

Not too much inclusion, obviously Presumably the lay member will be issued a nice rubber stamp along with their seat at the grown-up table.

 

[Keela Too]

"Additionally, we will include a lay member on the recruitment panel for the chair of the guideline committee.”

I wonder how one applies for that. I thought that they were already underway with that process anyway? Weren't applications for the chair due in at the end of January?

I "think" I read somewhere that the Lay members are a people who have applied to be on the Lay team (or something like that). They are not specific to anyone guideline or purpose, but can be asked to act as Lay participants when and where required. So maybe the post on this panel was advertised amongst that group and not openly.

Perhaps we missed a trick not having people apply to be Lay people for NICE. Hmmmmmm..... wonder what the background of that Lay person is?

 

[Cinders66]

NICE need to take responsibility for their part in the unhelpful framing of this illness. The direct consequence has been lack of research interest which ironically Mark Baker has said is a tragedy.This ofcourse has been the vicious circle - no research , no robust single evidence for disease or medical treatment - guidelines and centres focus on broad umbrellas and behaviour intervention - medicine doesn't take it seriously - no research.

Give an illness an naf name, loose the serious ME in a fatigue plus one criteria and claim most mild - moderate will be helped by behavioural intervention and guess what serious researchers stick with respected diseases. It's why I liked SEID & the IOM report , it enabled a break from the perpetual debate to a fresh start, to talk about a more specifically defined, more seriously taken illness. I'm just not sure UK will let go of a vague CFS or recognise ME - then what we might get is just a vaguely improved guideline that just waters down the CBT/GET , adds in a tilt test and a few other bits and otherwise it's the same. It will reduce harm to the newly ill but will it change the way ME is cared for, respected and researched?

In terms of a treatment section if we get rid of fatigue disorders and have a section on basic management of the rest, I'd like there to be a glaring lack of them so that Drs can see the stark truth. That doesn't mean the newly ill are faving despair, because well managed and early diagnosed they have good chances for a reasonable life, the rest of us need action though, and the hype over CBT and rehabilitation - a nd the severe are under rehabilitation pressure - is masking the reality.

 

[Webdog]

These days, @Webdog , with the rate of flu deaths for kids at an all time high, and increasing coverage of the Lyme debacle grabbing the spotlight, CDC repute may be not something NICE wants to hang its hat on.

Apologies for lack of clarity. I didn't mean to suggest any relationship between NICE and the CDC.

What I intended to say is that Healthwise itself considers NICE and the CDC top level authoritative sources for its own ME/CFS treatment recommendations. Changes to NICE guidelines could affect Healthwise's ME/CFS treatment recommendations.

 

[Andy]

Would have been nice (haha, see what I did there??) for them to send these details out to the stakeholders directly....

ETA: Just sent an email asking when we will be informed officially.

And the hugely helpful answer is

Hi Andy,

We have indeed confirmed the current date that we intend to run the ME/CFS scoping workshop on in May of this year. However, we do not currently have any further details at this time to confirm with yourself and our stakeholders for this guideline.

We will send out further details to you nearer the time of the workshop once this has been agreed.

Best wishes,

 

[MEMarge]

And the hugely helpful answer is

Such a shame that even the "repliers" to emails, presumably a low pay grade, have learnt the art of answering a question that wasn't asked.

 

[Andy]

Such a shame that even the "repliers" to emails, presumably a low pay grade, have learnt the art of answering a question that wasn't asked.

Exactly that. Perhaps not a sensible thing to do but I sent a further reply,

Thanks for the response Josh but I’m more than a little disappointed that I have to find out the date of the next stakeholder workshop from other patients who have spotted a news article on the NICE website. As I assume you are aware, ME is a condition that severely restricts the energy that is available to patients, so giving as much warning as possible is critical, as are clear communications.

Did you mean to confirm that it will be held on the 25th in your email? You say "intend to run the ME/CFS scoping workshop on in May of this year”, so I’m not sure if you accidentally missed out the date or if you were unaware yourself that the 25th had been announced? Is the 25th the correct date? For reference, the news article is here, https://www.nice.org.uk/news/article/nice-announces-next-steps-in-updating-its-guideline-on-me-cfs

as I am still unclear as to whether he has confirmed the 25th as the correct date or not.

 

[Sisyphus]

Apologies for lack of clarity. I didn't mean to suggest any relationship between NICE and the CDC.

What I intended to say is that Healthwise itself considers NICE and the CDC top level authoritative sources for its own ME/CFS treatment recommendations. Changes to NICE guidelines could affect Healthwise's ME/CFS treatment recommendations.

This is the law of bureaucracy, which is the same as a rendering plant: what matters is the process, the people being processed are of mere feedstock.

 

[Valentijn]

There's a list of the steps taking in a review at https://www.nice.org.uk/about/what-...ice-guidelines/how-we-develop-nice-guidelines

So it sounds like we're done with Step 1 (Topic Chosen) and this is what it says regarding Scope:

Scope produced
The scope outlines:

• why there is a need for the guideline
• the areas the guideline will and will not cover
• what it intends to achieve.

A draft scope is provided to organisations with an interest in the topic (known as stakeholders) to comment on. Following this, a final version of the scope is published.

Read more about stakeholders and guideline developers.

More details of establishing the scope are at https://www.nice.org.uk/process/pmg20/chapter/the-scope

Stage 3 of the scope may be most relevant in establishing that this is about ME/CFS, not CF:

Stage 3: identifying the population and key issues
Stage 3 includes identifying the population and considering the key issues for inclusion in the scope. These may have emerged during preliminary work, or may be identified by the scoping search, considering any health inequalities and impacts on equality, and consulting experts.

Identifying the population to be covered and the most important aspects of the topic to be covered by the guideline is critical because it determines the breadth and depth of the work. It ensures that the guideline focuses on areas in which providers and commissioners of care or services most need advice (for example, areas in which there is unacceptable variation in practice or uncertainty about best practice, areas of unsafe practice, uncertainty around the optimal service configuration, or where new evidence suggests current practice may not be optimal). The process should ensure that a range of care or services is considered, including key areas for quality improvement, and that the resulting guideline can be used to inform the development of a NICE quality standard.

But NICE is generally handling all of this internally, up until Stage 5:

Stage 5: checking the population and selected key issues with stakeholders
It is important to seek the views of stakeholders to confirm that the population group(s) and key issues identified by the Developer are relevant and appropriate. This includes organisations led by people using services, and organisations that represent the interests of people with the condition or people using services and their family members or carers, or the public.

For some guidelines, registered stakeholders (see section 1.5) may be invited to a scoping workshop to talk about the key issues in the scope, and discuss any other aspects as needed. A workshop may be held if the referral is in a new area, there is a new audience for NICE guidelines or a guideline topic or an area of practice has unique complexities. Following discussions with the Developer, NICE staff with responsibility for quality assurance decide whether, and when, to hold a scoping workshop, and document the rationale for the decision. They also arrange the workshop.

The workshop is usually held before the consultation on the draft scope, but may be held during or after the consultation period.

The scoping workshop, if held, is in addition to the formal consultation on the draft scope. Stakeholder organisations with representatives attending the scoping workshop are also encouraged to submit comments in writing as part of the scope consultation. Depending on the needs of stakeholder groups, virtual workshops, such as webinars, may be held in place of face‑to‑face workshops.

The scoping workshop is chaired by a senior member of NICE staff with responsibility for guideline quality assurance.

The objectives of the scoping workshop may include:

• obtaining feedback on the selected key issues, including any important considerations for implementation
• identifying contextual issues, such as national policy or areas of care in which there is known variation in service provision
• obtaining views on what should be included and what should be excluded (for example, populations, settings, interventions)
• identifying which people using services or population subgroups should be specified for particular consideration (if any)
• considering existing NICE recommendations and how the planned guideline relates to them
• seeking views on the composition of the Committee (see section 3.1)
• encouraging applications for Committee membership.

People attending the scoping workshop are sent the initial draft of the scope, which is intended as a starting point for discussion.

So from what I understand, the previous meeting of stakeholders was an optional preliminary meeting used to help them determine the scope before they draft it. Then their drafting of the scope will be reviewed by stakeholders to make sure we're all on the same page, and that they are understanding what patients and other stakeholders are wanting out of this.

It'll be interesting to see if their draft of the scope really does reflect patient concerns, or if they're trying limit the scope to retain most of the old guideline. After the May 25 meeting with stakeholders about the scope draft, they'll come up with a final scope statement. Then we get a month to comment on the scope from June 21st to July 19th, to let them know what we like and what needs to be changed. This is especially important since the evidence review will be determined by the scope to a large extent.

The Committee of practitioners and patients/carers won't come into play until later typically, during the evidence review. Though it sounds like sometimes the chair and few members can be recruited earlier to provide guidance to NICE's people.

 

[Barry]

It sounds like the next meeting of minds will likely be the Scoping Workshop then.

 

[Andy]

Finally got a further response.

Dear Andy
Thank you for contacting NICE about the update to our guideline on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.

Your enquiry has been forwarded to the enquiry handling team for response, we deal with queries about the work of NICE and the guidance that we produce.

Unfortunately it looks like my colleague omitted the date for the stakeholder scoping workshop in his response, however I can confirm that the workshop is scheduled for 25 May, this date was uploaded to the webpage for this project a few weeks ago. We have also published the dates for committee recruitment, consultation dates for the draft scope and draft guidance. These are the intended dates, the page will be updated if any of the dates change, however we do not normally send out updates to our stakeholders at this initial stage informing them that these dates are on the website. We will contact stakeholders nearer the time at each key stage in the development of this guideline to confirm further details.

For your background, there will be positions for both health professionals and lay members on the guideline committee. The guideline committee will be appointed by open recruitment in line with NICE's policy and procedure for recruitment and selection to advisory bodies. The resulting committee should, as far as practically possible, reflect the range of stakeholders and groups whose activities, services or care will be covered by the guideline. We are aware of the strength of feeling in the community and we will work to ensure a balanced and diverse committee, as we do for all our guidelines. With that in mind, for this guideline, there will be a lay member on the appointment panel for the chair and there will be double the usual number of patient representatives on the committee (4 instead of 2). Positions for the committee will be advertised on the ‘join a committee’ section of our website.

I hope this is helpful. If you have any further queries you are welcome to contact us directly via email: nice@nice.org.uk.

Please tell us how we did by completing our short survey. It will only take you a couple of minutes.

Kind regards
Janet
Janet Fahie
Communications Executive
Corporate Communications
National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United Kingdom
Tel: 0300 323 0141 | Fax: 0300 323 0149
Web: http://nice.org.uk

So it would seem that it is more important to them to have their website updated than it is to keep the stakeholders informed. Is it just me or is that the reverse of what it should actually be?