Should Science for ME produce its own ME guidelines?

I think there is a chance that it could have some influence if it's endorsed by patient organizations.

It's also a response to organizations that publish guidelines but exclude patients from the development or limit patient involvement.

 

‘Yes, but ... ... ...’

I think our response to the UK draft NICE guidelines indicates we collectively could produce our own suggested ideal model of services for people with ME, and even just a rewriting of those comments as a stand alone document rather than numbered responses to something else would be a worthwhile exercise. Then within any ‘yes’ answer to ‘should we’ I see there is also a ‘but ... ... ....’

• Such a document would be a potentially enormous amount of work, especially as it has no necessary end point, it is hard to know how to decide when it would be finished. Our response to the UK Nice draft had a defined scope and an immovable time scale, but this suggestion has no necessary time scale or scope.
• How would we define our intended audience? Are we wanting to get individuals and their carers to know what they should be asking local service providers for, are we wanting to inform medical and care staff about what they ideally would be providing or are we looking to produce something that could be used to lobby politicians and purchasers/funders?
• Do we have the resources, for example though I would personally be happy to react and comment, I have an impaired ability to structured arguments and to remember adequately and to organise the required information and references, over and above limited energy? A lot if work would fall on a lot of already very time committed people?
• Will it raise more questions than it answers, given there is so many research questions that have just not been answered?
• Though I am thinking a document that is independent to local circumstances or local types of health care provision is a very exciting idea, is it practical? Would any document be fatally coloured by the national background of those pushing it, our is it even possible to produce something worthwhile without detailed reference to existing health service provision? Do we set out our desired ‘pie in the sky’ or try to set achievable targets, such as ‘each country should have agreed research objectives’, ‘each should be working on its own national guidelines’ or ‘international and national patient groups should be lobbying for adequate welfare, financial and care support for people with ME’.

Personally I think it is a very interesting idea, but we need a lot of work on the what and the why, before we can answer ‘should we’.

[edited for clarity]

 

It should be limited in scope so as not to become a lot of work. I don't see the point in doing fine grained analyses of clinical trials.

For example, on the topic of diagnostic criteria it could say that one with postexertional malaise should be used.

For treatments it could say that currently no treatments have credibly demonstrated an effect, briefly explaining the issue with CBT/GET studies, as well as mentioning specifically the lack of effect of antivirals.

Other topics could include orthostatic intolerance, epidemiology (yes it can occur in kids and it can be a frighteningly severe illness). Also clarifying that PEM is not an ordinary reaction to unaccustomed exercise.

It should also say something about the lack of evidence for the BPS model that claims the illness is perpetuated by psychological and behavioural factors.