METRIC (UK) Royal College of GPs' online course on ME/CFS

from the pdf:

yet another example where if BACME (as signatories to the IAFME consensus document) were sincere they could make a difference, but they clearly aren't and won't.

 

OK - I've had a look. I don't think I've ever seen an education module that is as bad as that, and I've edited (rewritten and reconstructed) quite a few!

I have absolutely no idea how anyone doing this module could come away feeling anything other than completely confused about this "CFS/ME".

In part 1, the thing that strikes me the most is that there is little or no distinction made between which symptoms are exclusionary or inclusive/confirmatory.
They seem to be asking the GP to collect lots of information, but don't tell them why it is important or useful to their diagnosis, or whether indeed it is at all.
After reading part 1, I would have no idea - apart from maybe there being something about fatigue, but even that is a bit vague.

Often the most useful thing in an education module for GPs would be to paint a clear picture of what an average patient with ME looks like, and to include a few case studies depicting the sorts of situations they are likely to encounter. It is the stories that patients will tell that will help the most, because there are bound to be things that come up time and time again. As there are no diagnostic tests, this is absolutely key to providing something useful for GPs.

Then, they need information about how they can best help, with things like symptom management and signposting to other services, if they exist.

Part 2 is dreadful. Most of the information is completely irrelevant to GPs because it concerns things that are currently provided by secondary services (and that's before we get onto how 'useful' they are anyway).

There is nothing on pain management, or pacing, or any info on drugs that might help. Just appalling.

 

also no mention of the ICC; I think they would learn more by just reading this paper (article)
Myalgic encephalomyelitis: International Consensus Criteria
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02428.x

eta: and this was written in 2011

 

Praise, be, this module is truly dreadful and dangerous.........

 

I don't think "boom and bust" and the weird 3 energy thing are part of NICE guidelines, neither is there any actual published literature on it, it's as speculative and made-up as it gets. It's clearly not a problem.

Of course different rules when objective reality goes against the psychosocial narrative but this would be a tough argument to make when it has clearly not been followed.

 

Thanks @EspeMor for your reply. I hear what you are saying but can I just clarify are you saying that the MPs had information on the actual bps content of the GP online training module? Thank you.

 

The course reads exactly like the pacing booklet I remember getting from Action for ME 14 years ago. Boom and bust mentioned frequently and though the book’s title was Pacing it was clearly advocating gradual increases in activity as the path to recovery. If you read further they would qualify recovery for many was ‘a new normal’, the usual confusing double speak.

 

Thank you for your expert review, so it fails by the sounds of it not only by dangerously promoting the false bps model of ME but also by not following the standard content that should be included in a medical education module.

 

Yes, it reminds me of the system for getting a tourist visa at Antananarivo airport in Madagascar. There are four stages. Receiving a form from an attendant and filling in the form and paying lots of money. Showing the form and receipt to someone else who writes out another form. Showing the other form to a third person who stamps your passport and showing your passport to a fourth person who confirms that there is a visa in it. None of this is to any purpose, other than collecting the money, since they do not have computers to check if the information is correct and always issue a visa. Thereafter nobody looks at the visa.

 

BPS has been very good at presenting themselves as experts. To people who haven't done the research, may all look very proper and official, I'm sure.

 

The impression I get reading this is that the intent is sincere, but the content dangerously misguided. Like me sincerely believing I could do a bit of brain surgery. Is it any wonder that genuine hard working medical professionals get it wrong when they are taught this rubbish. I guess sensible NICE guidelines are a prerequisite, before this kind of educational material can be changed. Might be good if it's inappropriateness could be highlighted though.

 

There's been talks (I can't find the comments but this is as good a place as any) about trying to build a training course and I think it's worth trying. ME-pedia would be ideal for that. It has version control, moderation and it's easy to export to another format. I can't imagine we can't do this given the numbers we have grown to and the expertise that we have.

 

Have you talked to any major MEpedia contributors or developers on this? It might be that we would need more editorial control than is generally wiki-friendly.

 

Hi @JaimeS, of course agree 100% about BPS proponents being v good at presenting themselves as experts, but sorry don’t quite follow the point you were making?

I saw 3 written Parliamentary briefings before last Thursday’s UK Parliament debate, one from Invest in ME, one from ME Action (presume ME Action UK?) and a joint one actually written in June by MEaction, MEA, AFME and ME Trust but advertised by MEA etc last week. All 3 briefings rightly pointed out that doctor training on ME needed to be more up to date, but I thought it would have helped even more if MPs could have given a concrete example of this by our charities by telling them a good example of out to date training was the current RCGP online module training for general practitioners that followed the discredited deconditoining theory of M.E. I thought it would have besn particularly been good to do this as the Minister in June actually cited this online course as showing doctors were getting training on ME. I was unaware of the dreadful bps content of this training module until this week.

Edited to add - Invest in ME in their briefing did make clear any courses in the UK on ME for doctors was the false bps model.

Also although I mention it would have been good if the briefings did share the current GP education on ME is on the false bps model I do appreciate how Carol Monaghan in particular has such good understanding now of the issues and the speeches by the other MPs showed they were well briefed too.

 

and it was reviewed in April 2018--after publication of Wilshire et al that busts all the PACE findings.

 

I'm so disturbed by this training I have to find a new GP soon after old excellent one left, & i am praying i can find one who's disinterested & not bothered to do it yet & wont want to after they see me for the first time. It freaks me out that this training is their polluting all those doctors minds with BS. No wonder they say/do such appalling things if this is what they're being taught.

An alternative training put together by more knowledgeable people would be amazing. But we need to be extremely careful that it doesn't present interesting but wobbly biomedical research as hard proven fact.... Declaring that "ME is a neuroimmune/metabolic/whatever disorder" ... as none of that is comprehensively proven yet.... we just don't know.... there are some interesting leads, but we don't know for sure , & it needs to say that, or it will do more much harm than good.

It'd be marvellous if it could tell the GPS that its fine to not know & perfectly fine to tell their patients that too!

 

On page 5 the author is not at all critical of the Oxford criteria.
Page 12

Page 18

Page 26

Rehabilitation? For severe ME patients?

 

Reviewed by whom ?