Scottish MP Carol Monaghan and her work for people with ME/CFS

Moderation note: Several threads have been merged to create this thread on background and news about Carol Monaghan. Threads on specific events such as parliamentary debates can be found by clicking on the 'Carol Monaghan' tag above.

Trial By Error: A Q-and-A with Scottish MP Carol Monaghan

http://www.virology.ws/2018/03/28/trial-by-error-a-q-and-a-with-scottish-mp-carol-monaghan/

 

Excellent - well worth a read.

Thanks both to @Dave 30th and Carol Monaghan.

 

Yes excellent indeed, the ME community is very lucky to have Carol Monaghan on board and of course DT who set this whole thing alight.

 

Surely from this, setting up the ME APPG might be viable again , with fresh faces and a real purpose ?

 

Quite a duo .

 

Sounds very positive from Monaghan. Great to have an MP seeming to take a real interest.

I can worry that it's a mistake to put any emphasis on concerns about the PACE researchers starting from a hypothesis about CFS being a psychological disorder, as it's easy for that to lead to distracting and irrelevant debates about neurological/psychological divides, stigma, etc, but it seems that she has been pretty careful on this.

 

"PACE-splaining". I like that.

 

Carol Monaghan: We must change perceptions of the debilitating illness ME

https://www.politicshome.com/news/u...-magazine/96009/carol-monaghan-we-must-change

With an estimated 250,000 people in the UK affected, Myalgic Encephalomyelitis (ME) is poorly understood by the public and by many healthcare professionals. Scant press coverage and a desire for quick catchy headlines has meant that perceptions of ME as “Yuppie Flu” or laziness are common, but surprisingly little is actually known about this condition...

 

What potent force Carol Monoghan is proving to be. Not a 5-minute wonder.

 

While less entertaining than social media shenanigans, this piece is probably more important, and I thought it was good and that we're very lucky to have Monaghan as an ally.

It's only a very short article.

I'm slightly worried at a drift in focus away from the PACE trial, and I think it's a mistake to do anything to present PACE in the context of a 'psychological vs biological'. I also worry about any reference to medical claims that seem based on no stronger an evidence base than the promotion of CBT and GET, even if it is cautiously phrased here, eg: "To develop effective treatments, we need a more realistic approach to biomedical research. A recent study by researchers at Columbia University found that there were specific patterns in immune biomarkers in people with ME, and some patients have reported improvements in their condition as a result of courses of antiviral drugs."

The conclusion sounds good: "Since I began this work, I have been overwhelmed by the cross-party support I have received from fellow members. Their involvement sends a positive message to people who suffer from this long-term debilitating illness, and offers MPs an opportunity to bring about real change in the lives of those living with ME."

 

While generally good, this needs improving

This gives, in my opinion, a dangerous impression that we get better over time - I'm not aware of any evidence of that.

 

I agree, it is important that this is being aired at Parliamentary level by someone new. Considering that the article has to be short and reach a wide audience I think it is probably ver useful.

On the other hand I am also disappointed that the advocacy style still seems to be stuck in this 'physical rather than psychological' and that anti-virals are mentioned when they are based on as poor science as PACE. It is also irritating when PACE is presented as having found something, which is then queried, when of course PACE found nothing.

The advocacy style of 'not psychological' and 'let's try more treatments' has been going on in parliament for over a decade. My suspicion is that the people who really need convincing here - buried in the medical establishment - are only going to be shifted by a sharper-edged approach. I can hear Simon Wessely now popping round reassuring people that in fact nobody thinks it is psychological and that we now know that CBT does not work on its own but will be brilliant as part of IAPT when combined with interveiws with 'employment practitioners'. So in fact the problem is in hand my friends - we are planning to devote much more to ME/CFS through our new treatment programme, which is of course very physical, including a proven exercise regimen.

 

From a purely public relations point of view, there is no need to mention 'psychological' at all, as it can reinforce the idea that it, in fact, is psychological, especially in those with pre-conceived ideas - that is just how humans work. PACE and the 30 years of dead-end of CBT/GET speak for themselves - when you get a receptive ear.

 

How would better advocacy look like?

Avoiding a debate around whether it's biological or psychological but instead pointing out that PACE was rubbish, that CBT/GET lack real evidence and are harmful according to patient surveys?

Avoiding anecdotes about some other treatment helping and instead pointing out how we cannot really help patients until we understand the illness better, and that in oder to do that, we need much more research?

 

I think it's generally pretty good. The psychological was only raised as the basis for pace, which it kind of was, although Jonathan's right it's easy for wesselyites to step in and say that's a simplistic misrepresentation. The BPS model isn't saying "it's in your head" it's saying that behaviour and beliefs (including psychological factors like catastrophising, unwarranted fear of exercise) are big perpetuating factors and that there's dysregulation and deconditioning that needs to be rehabilitated.

I agree with the points on viral treatment and if I remember that came from dr William weir and Dr shepherd ij their initial meeting. Carol is quite a newbie and perhaps has overestimated it

The recovery speak is the most misleading as we are not all on that journey.

My concern was from the MEA blog saying that they weren't sure what the MPs involved were going to have as their focus etc.

http://www.meassociation.org.uk/201...-westminster-hall-debate-on-m-e-07-june-2018/

"It is not entirely clear what issues Carol Monaghan and those other MPs who will be speaking will choose as their focus or what the purpose of the debate might be.

During the application presentation, Ms. Monaghan talked about the need to raise awareness and for greater biomedical research funding, but it seems likely that now we have confirmation of a debate, more specific objectives will be determined."

Isn't this a bit odd. Carol is quite new to the area rather than an expert, haven't the charities involved suggested what the aims and focus should be?
Hey there's a really important one off debate but we don't exactly know the purpose ...

 

We need to get Carol in here so she can benefit from the discussions and knowledge here.

 

Has the poor woman time for that? She has taken on so much already!

 

That would figure, unless she got it from Unrest.

I think just having debates and MPs producing articles must be good. I do worry though that if Willy Weir keeps going on about anti-virals and other rather soft bits of information he is setting advocates up for making fools of themselves. People like Sir Mark Walport (CEO of UK Research and Innovation) or Fiona Watt (executive chair of MRC) are not going to be impressed. I think Fiona Watt might be more impressed by being made aware that one of her predecessors got things very badly wrong with PACE.

The name of the game is for advocates to show that they understand better than the people in control do. That may be hard for a non-medical MP to convey but some simple quotes or clips might work very well. If all carol Monaghan did was show Graham's video the game would be won.

 

Instead of 'it's physical not psychological', perhaps a more nuanced analysis of the problems with 'biopsychosocial' as it has been used to investigate the condition is in order at some point?
It's not terribly difficult to understand and politicians are conditioned to sniff out meanings they find objectionable in seemingly unobjectionable terms. It may be easy to 'immunize' them against the "we've got it all under control with our [blah blah BPS] regimen".
Or maybe it's not necessary.

...

apologies if anything I say is redundant or irrelevant - I lack a lot of the context for all this stuff.

 

Previous videos @Graham has made are excellent too.