"Scottish Good Practice Statement on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS)"

Published 28 February 2023

This guidance is intended to support the diagnosis and management of ME/CFS in primary care, and was originally published in 2010. The Scottish Government has partially updated it to insert key recommendations from the NICE Guideline on ME/CFS published in October 2021.

This represents a first step in updating the Scottish Good Practice Statement (SGPS). Further work will be undertaken to more comprehensively review the guidance; in the meantime the document's original text has been preserved for reference.

The publication is currently being converted into accessible web content. In the meantime, please check back regularly or download the supporting PDF.

https://www.gov.scot/publications/s...cephalomyelitis-chronic-fatigue-syndrome-cfs/

 

They need new guidance developed in collaboration with patients, not 13 year-old trash with small updates from the NICE guidelines.

 

Agreed. It isn't like it is in response to Nice or someone issuing 'a small update'.

It was a whole new guideline, which is not just an update to something now 15yrs out of date and very different.

I don't see how it can be justified to not start from the new guideline, instead of the old, when finally 'getting round to after over a year' making sure their information is accurate as per the new guideline.


Was the direction to whoever did need to get their house in order when a new Nice guideline is issued not clear enough, and needed to underline in no uncertain terms that this needed to begin with binning old content?


I'd like to think/assume when H Pylori was discovered noone was silly enough to take the old stuff telling people to stop being type A/eat less fatty food or whatever cliche was there and instead chose to bin it to start afresh. Ironically I guess the same with whenever back pain advice changed from 'lie in bed and keep still' to 'move around'.

 

Completely whitewashes the fact that patients have been mistreated, discriminated and neglected to massive harm and needless suffering by the coercive use of a model based on denial of reality.

But the information given is mostly accurate. The overall description of the illness is quite good, even though it still allows old discarded bits like the role of trauma, which has long been asserted and believed but has not a single bit of evidence.

It's a bit aspirational in that what it describes healthcare services should do is basically... their usual job. If only they were trained for this and had put some effort into it. Which has been categorically refused so far, and will continue to be as long as the history is whitewashed with hopium. Shows how this was never difficult. And that were right all along.

The repeated use of "holistic" is a problem. Holistic means woo. Woo is bad. Multidisciplinary is the word they should be using. Holistic is never good, it's code for "no quality or effort needed here". It's precisely what we need to move away from, away from alternative medicine and onto scientific medicine.

Lots of emphasis on mutual decision-making, which again whitewashes the coercive system that has been forced on us for decades. This won't happen by simply wishing for it. It has to be enforced and we need our rights to be respected. That has never happened and is still not happening without being ordered and respected, a massive departure from the current model.

Some useless stuff about "boom and bust" and doing a diary. Can't let go of the pseudoscience-based stuff, that would require acknowledging it never had any evidence.

Again some aspirational stuff: treat GI issues as IBS. Well that would be great if medicine had not done the same thing with IBS that they did with us. To be able to treat something, you have to put in the effort. It hasn't, ergo nothing to show for it.

It explicitly advises against GET, but describes pacing as mostly GET-lite, kinda, clearly does not understand the depth of disability, however. It still confuses the process with the outcome about activity. People easily do more as they can, this is never a problem. More than anything, people need help with daily activities. They don't need to do more, they need to be able to do less without consequences.

However they whitewash why GET has been established, says that it's about preventing deterioration, when it was always about assuming deconditioning as the real issue and nothing else but "illness beliefs". Some useless bit about how it should be delivered by specially trained people, even though there is no evidence this is relevant. In fact those tend to do worse. Again this is political.

It misrepresents the issue with GET being about being incorrect applied, when the real issue is that it was always based on an invalid premise and has no established efficacy while causing significant harm to many. Which is only framed as a controversy, even though we have been right all along.

CBT is there, again for political reasons. Best they can come up with is it "may be useful". Despite there being no such evidence. There is no point funding services that aren't useful to patients and CBT was initially applied on the basis of those "illness beliefs", itself out of nothing but beliefs.

At least it does point out that the old model is that CBT was used as a cure, and should no longer, which again whitewashes the fact that invalid evidence was forced onto people for years. Never correcting the failing process, no one is responsible anyway.

In the end it comes down to the fact that we were always right, but that isn't recognized. There is still a lot of useless baggage in there. Basically: if medicine had put in the effort, they could do a lot of good. But they didn't, so most of this is aspirational and does not recognize the fault for why this didn't happen before and just how much work there is to be done: basically all of it.

Overall: not great, not terrible. It's a tiny step, but it won't make a difference to patients unless there is a clear and unambiguous message that harm was done and mistakes were made. We are not there yet, this is as small a step as can be taken.

In the end people still need to be trained and have experience with this. There is none of that, appeals for specialist services are still routinely rejected everywhere.

Somehow bits about FINE and PACE, as a future trial, are still there. As in it says that PACE will report results in 2010. So there are editing issues where deprecated statements were left.

 

MEactionScotland have been involved in this, see tweet in second post of thread below:

https://www.s4me.info/threads/meact...h-implementation-deadline-1-march-2022.24741/

But that was a year ago and this is document is a mess. I was totally confused when I first looked at this as it just seemed to contradict itself. If they want to preserve the original document for reference, fair enough, it should be clear that is what it is. Key points where it is superseded by the NICE guidelines could be presented in a separate document with an explanatory note.

It does allow you to give feedback underneath.
Has anyone got contacts in meaction Scotland to flag this up?

 

I've messaged someone

 

https://twitter.com/user/status/1631344558050091038

 

The ME Association have written a medium length piece with information on this and the 2010 edition:
https://meassociation.org.uk/2023/03/scottish-good-practice-statement/