Maybe worth contacting him to see if he’s got it on his radar again
Now NICE is published, patients, the wider public and medical profession need to have an up to date consistent, unconfused and unambiguous line of advice, and include sets of directions/ statements about the NICE Guidance for ME and CFS consistent with NG206.
This approach MUST be reflected across all NHS websites, or any linked to NHS partner providers, e.g. in charities, non governmental bodies or arms length organisations of private sector and Communities Interest Group Service Providers ?
Request from
LOcalME;
As the charities are discovering, confusion and contrary statements and approaches prevail on these vital websites.
I believe this is in hand on the ‘to do’ list.
1. Firstly can we request that all guidance documents which are contrary to NICE, or should have been reviewed years ago and were not, ideally be instructed to be taken down?
2. Failing that a CLEAR WARNING OF HARMS Flag on website to the effect the guidance is inconsistent with NICE NG206 and may contain views that constitute harms?
regards,
B
The following is 10 years outside its review date.
There has been no oversight or monitoring of it since 2013.
It needs taking down and the leaflets withdrawn as as well as harms it causing terrible consequences for ill health related work situations and for benefit claims and personal PHI claims. ( often attached to mortgages). It’s pernicious effects are still being experienced as it still is accessed and used by local Foundation Trust Staff.- I have checked recently.
(I have the full audit trail of this from 2005-2006 available electronically as reference.)
Specific site of concern
https://www.nhshealthatwork.co.uk/health-work-wellbeing.asp
The Government's Work and Health Unit
Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline, 2006
The 2006 guidelines are still live on the NHS website.
I expect that the NHS Health Network people are going to want to do what they can to ignore these problems for as long as they can.
Maybe the APPG can pick this up once again?
Justification
1. Because this guideline was due for review I think in 2011, and ‘project” was need 2013 2014, they didn't bother to do it.... so it's "past it's sell by date” . Please draw this to attention of APPG charities and Carol Monaghan.
3. inconsistency with NICE NG206 and may contain views that constitute harms.
Question from LocalMe
Have you checked as a matter of interest were the
Faculty of Occupational Medicine stakeholders and did they submit comments? - (Yes they were and did comment, see below)
Faculty of Occupational Medicine was listed -
https://www.nice.org.uk/guidance/ng206/documents/stakeholder-list-2
Faculty of Occupational Medicine Guideline 027 -28 Section1.11.6
We do not agree with this statement: Advise people with ME/CFS to reduce their activity if increasing it triggers symptoms, or if they have fluctuations in their daily energy levels.
Thank you for your comment.
A fter considering the stakeholder comments this has been edited to,’ Advise people with ME/CFS how to manage flare-ups and When returning to work it is important that health care professionals give reassurance that an increase in symptoms on return to work is unlikely to mean harm in most people.Reference: Waddell G, Burton AK. Concepts of rehabilitation for the management of common health problems: The Stationery Office; 2004.relapses (see the section on managing flare-ups in symptoms and relapse).’Faculty of Occupational MedicineGuideline021Section 1.9.1
We are concerned that this recommendation may increase fear avoidance beliefs about returning to work.
We would prefer NICE to give ME/ CFS sufferers the following guidance:
•Work is generally good for health.
•Work provides purpose, boosts self-esteem and enables financial independence.
•Worklessness is associated with poor physical and mental health and increased risk of self-harm
•Ask the person what they believe are the main factors impeding their return to work.
•Ask them if they can identify solutions to their return to work obstacles
•Do they need adjustments to their work to enable them to return (e.g. flexible hours/ working from home/special equipment)?
•Encourage them to liaise with their employer to see if the adjustments could be facilitated •If they need assistance with paying for any adjustments, they or their employer may be eligible for financial assistance from Access to Work (
https://www.gov.uk/access-to-work)
Thank you for your comment and information. After considering the range of stakeholder comments the recommendations in this section have been reordered starting with accessing support. ‘ and discuss with’ has been added to the recommendation.
The discussion points you have raised have been summarised and added to the committee discussion in evidence review A.
Ask if they have access to occupational health advice via their work; if they do encourage them to make contact with their occupational health department
References •Black C. Working for a healthier tomorrow. Dame Carol Black's Review of the health of Britain's working age population. Norwich UK: TSO (The Stationary Office); 2008.•Health matters: health and work. PHE, 2019