UK Parliamentary debate today - Thursday 24th January 2019

On face value, the point of the debate was to establish if Parliament supported this motion

As I've said up-thread, this debate was a step forward and was never going to be anything else. Anybody with the expectation that this debate would cause the government to publicly spring into action and chuck research money about was bound to be disappointed. I don't disagree with the idea that they should do that, but I had no expectation that they would do it.

 

Just wanted to belatedly thank everyone involved in this - not just on the day, but in all the years of hard work that led up to it! Patients shouldn't be in the position of having to fight off bad research being applied to them and being defended by a powerful establishment. Our position is extraordinary, and so has been our fightback.

I heard these key points being repeated over and over (a sign of good briefing!):

• Need more biomed funding
• ME research funding is only 0.02% of govt medical funding
• Govt has only been funding behavioural crap
• PACE has been discredited
• NICE recommendations for GET should be suspended immediately
• Kids with ME are at high (20%) and inappropriate risk from Child Protection Services

I agree we now need to take concerted action to capitalise on all this.

Just think back to the rubbish spouted in House of Lords debates when the Countess of Mar brought up PACE!

We've come a very, very long way. We should all be proud. Let's take a minute to feel it!

 

I think that’s a bit of mis characterisisation of what people expected if they expected something, although you are making a point. This is also the second or third debate, not the first so I had expected a degree of movement. I wasn’t exoecting his brief put down on funding after all the MPs emphasized it was desperately needed and the motion said

“That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME,


. But it seems there’s possibly been some MRC movement behind the scenes.

 

Maybe because they're still thinking about how best to word their reply to make themselves look like they're still the experts and that the 'hoodwinked-by-anti-science-militant patients' MPs were conducting themselves unbecomingly. Still, we can hope they just keep quiet, for a change.

 

Spot on- Barts clinic , then once the " leading light" said in 2008,
" We don't do home visits", or severely affected or children!" and charged over £4500 per patient tariff when poor old Norfolk and Suffolk did all that over a vast geographical rural area for £450 or so per patient. It's a crazy world!

 

List of those who spoke at the debate, if your MP is in the list then even the briefest of notes thanking them would probably go a long way.

• Carol Monaghan, Glasgow North West
• Jim Cunningham, Coventry South
• Paula Sherriff, Dewsbury
• Robert Goodwill, Scarborough and Whitby
• Matthew Offord, Hendon
• David Amess, Southend West
• Justine Greening, Putney
• Julian Lewis, New Forest East
• Adrian Bailey, West Bromwich West
• Nicky Morgan, Loughborough
• Emma Lewell-Buck, South Shields
• Kevin Foster, Torbay
• David Drew, Stroud
• Stephen Kerr, Stirling
• Kelvin Hopkins, Luton North
• Stephen Pound, Ealing North
• Karen Lee, Lincoln
• Ben Lake, Ceredigion
• Liz Twist, Blaydon
• Nick Thomas-Symonds, Torfaen
• Liz McInnes, Heywood and Middleton
• Patricia Gibson, North Ayrshire and Arran
• Darren Jones, Bristol North West
• Mohammad Yasin, Bedford
• Jim Shannon, Strangford
• Philippa Whitford, Central Ayrshire
• Sharon Hodgson, Washington and Sunderland West

And Steve Brine responded for the Govt.

 

We hoodwinked 27 MPs into speaking up for us - how powerful are we! What shall we do next with our superpowers?

 

Our version is the 2010 Scottish Good Practice Statement, SGPS, not quite as bad as NICE GL, but still far from perfect. Clare Gerada - at the time chair of RCGP - and Edinburgh neuropsych Dr Alan Carson both contributed to SGPS, to the detriment of PwME. I was not involved at all w the development but my understanding was it was a total stramash, lots of unhappiness at Gerada and Carson’s input at time. I am not clear why Clare G was involved either as UK chair...

https://www.scot.nhs.uk/scottish-good-practice-statement-on-me-cfs/

 

Re lack of MRC funding due to 'lack of good applications' (Steven Brine Minister),
might it be worthwhile to compile a list of the biomedical research funded by patients/charities over the last 10 years. Plus the Biobank (which if i remember rightly received funding from the USA [NIH?])

Might it also be worth putting together a list of the MPs and their contact details who attended both debates as a S4ME 'mailing list' (for committee use only).

 

I think it is useful to separate the function of Parliament from that of government. The usual route for looking into anomalies is better than ministerial because it is cross party and run by the Parliamentary Select Committees. Ministers can be called to account there.

There is a Select Committee looking at the PACE issue - with Monaghan and the other young male MP David Tuller and I met up with (?Mark Jones) on it.

I realise that and I am not sure why not. It may not necessarily be a bad thing.
From what I have been told a preliminary biomedical proposal should be with MRC this month.

 

Yes, yes, and almost certainly no. Although he gave off all the right signals when my wife and I met him, he was not Secretary of State for Health and Social Care at that time. I'm pretty sure now his overriding priority is maintaining the status quo. I did email him of course prior to this debate, but I no longer get any replies. Deeply unimpressed with him these days. I may send him another email.

 

I realise that funding of ME research has been dire but I don't see any mileage in trying to argue it has been unfair. Throughout my career the MRC funded essentially nothing on rheumatoid arthritis. I can think of one or two groups in the UK who have probably had reasonable applications on ME turned down by MRC but I suspect many of the others on the list in the tweet were weak. The group of projects funded with the 2012 ring fenced funding were pretty uninspiring and certainly not at a level one would normally expect MRC to fund. The basic problem is that it is very very hard to think up promising-looking projects for ME. There is an ongoing process of trying to gather together the best projects just now and it is not as if there are obviously high-quality proposals sitting waiting.

Over the last three to four years a shift in the academic politics has been needed and I think much of that shift has occurred. I think it is right to keep pointing out that ME has been underfunded but I am not sure there is much to be gained by listing what may turn out to have been weak projects.

 

Thought the session was good. Hopefully the MPs will keep it up and work for solid actions.

Brine was bad on the lack of applications as an excuse for funding. Even worse, just stating that it is up to patients to turn down controversial therapies. Well, if it only was that easy. How easy is that in regard of welfare benefits and demands?

I agree that we couldn’t expect Brine to come forward with a lot of promises. But it is to easy to blame the system and different roles. By principle he’s right, but you can’t really hide forever behind such statements, that we allocate this and that, but can’t instruct. It’s obvious that the system must be like that, but very concerning that actions are so few when you (government) obviously must be aware that circumstances are totally unacceptable.

Small steps, but optimistic.

 

Thinking again about the debate what now strikes me is that something quite significant has been achieved, due to Monaghan and Morgan's skill with tactics, which we may underestimate. The last debate was about PACE-bashing in general. This time there was a specific motion that the House calls for suspension of recommendation of GET and CBT. That does not amount to telling NICE what to do but it is pretty remarkable for the Commons, sitting in the main chamber rather than some offshoot chat-room (Westminster Hall), to tell NICE that MPs unanimously think they have got their guidelines wrong. There was not a single attempt to defend these treatments. Moreover, the cogent reasons for suspending recommendation will be noted in Hansard.

Nothing may happen immediately but it seems likely that those who support these treatments are going to find themselves thinking they may actually have to provide some justification rather than just pulling rank.

 

Steve Brine, MP states "There have not been good enough research proposals brought forward" [for the MRC to fund into ME].

Ok, on the one hand, there may be an element of truth in that and we need to understand why.

But, responding to his statement, I would ask in whose opinion? Who is judging the quality of proposals? Who are they, who do they listen to, and what is their historical bias in this area of research, and do they have any conflicts of interest? Does 'not good enough' equate to 'not BPS', not consistent with their preferred illness model of hammering things that would be nails, and if that doesn't work hammering harder. From the look of it, these unknown people need to be retired and replaced with more progressive minds, unencumbered by mistakes of past.

 

It's a very slippery slope if they do interfere directly, that's why they are independent. Else politicians can just barge in and influence decision-making that should be independent of political shenanigans. Like when a politician occasionally seeks to influence criminal justice proceedings. But I do agree it's a tricky one.

This is the first debate in the House of Commons, which is what really counted. What has been achieved is actually far more than I had hoped for - unanimous support of the motion. Anything else would have been pipe dreams, absolutely impossible for a first HoC debate. This outcome is not about finally being able to wrap things up (if only ), it's about a seriously major change of the political landscape for pwME. I said, either here or on PR, well over a year back, that nothing was ever really going to change for pwME until the political landscape changes. Scientist, pwME, and advocates to-ing and fro-ing achieves a lot, but stalls without something else. Without political awareness, the media's active disinterest will not change, and the whole lot is stuck in the mud. But this new political shift may now encourage more good investigative journalists, and maybe their media organisations.

 

Darren Jones, the bespectacled young man from the Bristol area. He spoke yesterday during the debate.