UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

But Dr Charles Shepherd reported:

"....Unfortunately, the meeting got off to an extremely regrettable start – all due to a very small section of the audience making repeated and sometimes very aggressive interruptions about various administrative matters. As a result of this gross discourtesy to the Minister, the time available for the ministerial response was being steadily eroded. Despite several polite requests from the Chairman, the interruptions continued. As a result, the Countess of Mar terminated her involvement with the meeting. The Chairman then stated that he would either terminate the meeting or arrange for those involved to be removed from the committee room by the House of Commons police if their interruptions continued. Shortly after, those involved calmed down and we managed to start dealing with the real business of the APPG report.

On a personal note I am very much in favour of public attendance/contribution at these meetings. However, it needs to be said that if people with ME/CFS want to alienate parliamentary opinion about this illness, and not even have an APPG to put forward their case to ministers etc, then behaving in an aggressive and unpleasant manner is a very good method for achieving this aim. We already have a situation whereby some MPs are unwilling or reluctant to attend APPG meetings – all because of the obsessive and often unpleasant interruptions about administrative matters. And it could well be that after the Election, when the APPG will have to be reformed, it will be very difficult to find enough parliamentarians who are willing to take on an active APPG role. We just cannot afford to risk losing the support of distinguished parliamentarians like the Countess of Mar. It also needs to be said that the vast majority of people with ME/CFS who were present on Wednesday, or were being represented, had come to hear about the report, listen to the Minister, and then ask difficult questions about NHS services – they did not want to take up valuable time listening to complaints about the minutes and APPG administration. This could (and should) have waited till after the Minister had left..."


John Sayer (the then Chair of M.E. Support-Norfolk) continues, challenging Dr Shepherd's account:

"I’m afraid to say that this version of events at the start of the meeting is so inaccurate as to be justifiably called false. It is not just a distortion of the facts, it is blatantly wrong and I’m now ready to believe that this shameful episode really was deliberately engineered, in order to cast certain individuals – or ‘the M.E. community’ in general – in as bad a light as possible, presumably for the benefit of the Minister of State for Health Services and/or the TV production crew apparently, according to Shepherd’s notes, in attendance.

The “audience” as Shepherd calls us here, did not behave “in an aggressive and unpleasant manner”. Yes, technically speaking and in line with protocol, Davis should perhaps have waited for Turner to finish speaking before seeking to make a point to the Chair, but this was hardly the Crime of the Century and was certainly not a “very aggressive interruption”, as Shepherd would have it.

Neither did Turner make “several polite requests”; he was rude and abusive, to the point of verbal assault. That’s the simple truth. He behaved like an angry, out of control teacher trying to silence a pupil. It was a disgrace and an embarrassment and completely uncalled for. The ‘continued interruptions’ Shepherd refers to were actually contributions from those trying to calm Turner down – including, as I recall, Sir Peter Spencer, CEO of Action for ME!

It is not correct to say, “As a result [of the ‘contuinued interruptions’], the Countess of Mar terminated her involvement with the meeting”. She delivered an ultimatum and then left before anyone could even consider it. There was no need for “those involved” to “calm down”, because people were calm – so calmly spoken in contrast to Turner’s agitated outpourings, in fact, that it was a strain to hear what they were trying to say.

As if to reinforce O’Brien’s assertion that it is partly the fault of ‘the M.E community’ that progress is not being made, Shepherd writes, “…it needs to be said that if people with ME/CFS want to alienate parliamentary opinion about this illness, and not even have an APPG to put forward their case to ministers etc, then behaving in an aggressive and unpleasant manner is a very good method for achieving this aim. We already have a situation whereby some MPs are unwilling or reluctant to attend APPG meetings – all because of the obsessive and often unpleasant interruptions about administrative matters.”

No mention here of the APPGME Chairman “behaving in an aggressive and unpleasant manner” (which he did). No, let’s blame M.E. sufferers themselves for the lack of progress. This excuse just won’t wash any more, and in my own opinion, anyone – MP or otherwise – who is reluctant to get involved in our cause because of the justifiable frustration generally of M.E. patients who have had to suffer denigration, neglect and abuse for decade on decade, is quite simply of no use to us in the first place and we could well do without them..."


As I say, for the autumn 2010 meetings, under a new Chair, Annette Brooke, the meetings no longer permitted members of the public to attend.

(I heard a similar account of this meeting from another party who had attended, who recounted that she and another female attendee (both ME patients) were rendered shocked and shaky by Dr Turner's behaviour.)


So much depends on who the Chairs and Office Holders of these groups are. I do of course wish the new group success under the Chairmanship of Carol Monaghan.

 

Code:

https://twitter.com/CGATist/status/1234886478993514502

https://twitter.com/user/status/1234886478993514502

 

Code:

https://twitter.com/JNHanvey/status/1234844199893127171

https://twitter.com/user/status/1234844199893127171

 

I’ve received the bad news that as my MP is now a Junior minister, he is no longer allowed to be a member of any APPG. I have spoken to his Parliamentary Assistant and asked that he follows the work of the APPG on ME and is added to their mailing list. Waiting for confirmation of this.

will follow up with him in person ‘sometime’ this year.
He will still get all the necessary emails from me and my fellow constituents!

 

My MP, Fleur Anderson, is on board and went to the APPG. She’s also on the Education Select Committee, so hope she may also be helpful there.

 

Never fear Nellie, I am very persistent!!

 

This is potentially huge.
If the ring fenced funding mentioned is being asked of the MRC that's a massive u turn by the main two collaboration charities. If it's meant from government then it's a crying shame it wasn't campaigned for before.

It remains to be seen if this is the new aim, with a battle ahead to get it or if there's been some behind the scenes agreement been done. The government and MRC until very recently have been very confident in shutting the doors loudly on this more proactive approach. I wonder what figures are being discussed and what means of campaigning anticipated.
Edit. Or perhaps something is suspected around gwas funding.

To me it's been bleeding obvious that targeted funding, a strategy and some monitoring of progress was needed for years, surely progress has to be monitored if it’s a true priority. The only changes I can see from 2005 to now, is now the research case is stronger and the charities have proved conclusively that they're, in their current form, incapable of raising significant funds alone. So its “easier” to push for now now but I don't agree with suggestions that "now is the time" , I think that is a disservice to all the advocates and patients who've called for more than the just MRC collaborative approach , some dying in the horrendously long, horrendously empty gap between ths 2002 cmo report and today.

note AFME ceo Chris clark was calling for ring-fenced funds 2005, Peter spencer ceo asked for continued ring-fenced funding 2012. This is the first time I’ve seen AFME since than call for ring fenced funding under Sonya Chowdhury.

 

I’m guessing nothing controversial/radical on funding will be announced until after the CMRC conference as a possible way to explain the lack of news so far on this story.

 

What news are you expecting?

 

Official statement regarding the last APPG meeting and if there is now going to be calls for ring-fenced funds, or has this been already discussed to a degree , which would be a revolution in U.K. approach afaic after years of no activity in that direction.

if there are to be “calls for RFF” is that going to be something patients are going to be asked to lobby on with MPs and #MM etc. Who is RFF being asked of and how much and in what form. I would have thought all this is pretty big news to most people in the UK

 

I think there's quite a step from an APPG agreeing that there's a need for something and it actually happening though. I agree that it sounds promising but I'm not getting my hopes up too much.

 

Well asking would be a step, promoting campaigning would be another. There has to be action or it’s pointless and if there’s a need recognised, not acting on it is a failure. If the need for urgent ring fenced funding is agreed, as stated in the tweet, then to actually get that realised There are plenty of mechanisms to try to apply pressure, there’s a whole #milliins missing movement that could be applied to this aim (last year was supposed to be about biomedical research but Wasn’t really , nor was it publicised by the charities). If it was truly a United call it would have far more chance of success.

I think that its A Shame we have become so battle weary and disheartened uk versus countries. Maybe Our fight (with expectations risen) has gone on longer than other countries and it’s taken a toll with steam running out, charities like Parkinson’s U.K. have a monthly campaigning email for members to action on, Alzheimer’s uk lobbied on funding and won. The only way I’d agree with time for language is that I think that the Case has never been stronger. Maybe it’s targeting the government rather than MRC in line with the HoC briefing document.

I really don’t see how the establishment can look at progress since 2002 and argue it’s been enough or as expected. Even the NICE guidelines people said it was a tragedy that there hadn’t been more research progress as they argued there was nothing new to add in terms of treatment . If we can get “them” to recognise that and some responsibility for that instead of presenting it as an unavoidable tragedy, then surely pressure can be applied to get some more assistance. We either accept we are like some weed that has to just slowly struggle unaided through the concrete to the light or we demand Help and justice for our community to be given a chance to live again with more research to find treatments

 

Don't get me wrong, I agree with you @Cinders66.

I must admit, despite pestering my GP to attend, I don't really know much about APPG's and how much 'power' they have. If they can't enable some action then it is pointless. But not knowing I'm tending to err on the side of British pessimism!

I'm a bit new to advocacy so am learning the ropes still, and find understanding the true pressure points to make things happen difficult. But three things give me hope for this year, the APPG, the NICE review and the 'something in the blood' research that is going on in multiple labs (not necessarily in that order).

 

Thanks @NelliePledge .

 

I assume with the announcement of the PSP there will be no calling this year for state ring fenced funds. It seems every time the pressure might go up 2007 the Gibson inquiry/parliamentary pressure > expert group formation, 2013, refusing to sustain funding > the CMRC formation, 2020 genome study funding decided > PSP, there’s something put up instead of the money

 

https://www.meassociation.org.uk/20...dical-research-meeting-summary-17-march-2020/

 

Report from MEAction, which from a quick scan shares the vast majority of the same text, https://www.meaction.net/2020/03/17/appg-on-me-biomedical-research-meeting/

 

I’m very pleased by the nature of these presentations and the fact that the researchers themselves are impressing the problems due to lsck of it and need to MPs. The fact Julia newton had actually stopped ME research because of funding difficulties wasn’t something I was aware of and perhaps explains why she left the CMRC. But what’s the point of saying we need to encourage researchers via CMRC when the big two we have Can’t get funds. Personally I think that the policy to only fund Uber high standard stuff and just leave the field barren if that’s it or if the competition out does the ME applications, isn’t correct. That’s why ring fenced funding has always been needed.

I’m still essentially lost really as to what the charities want on funding and what their methods are going to be go get it. This frustrates me because we have needed a lot more funding for a long time and theGWAS study wasn’t enough. I don’t think we Have been represented enough on this by those who have been sitting around tables with the establishment.

Chris ponting did specifically say ring fenced funds were needed “

But other people in APPGs, invest in me et have called for this before, sometimes years before.
I’ve been calling for this on the charities Facebook for years. AFME do nothing but say “we need more money” and The ME association have repeatedly defended the MRC position. If not the MRC are they meaning government?
I haven’t seen any lobbying or campaigning on funding since the 2012 round and the 2013 APPG when both charity heads requested it and sue waddle from MERUK saID ME progress needed oversight, but MRC declined, a choice on their behalf.

. Supporting #MM to apply pressure on funding would have seemed logical if you really think there’s a huge need, but this didn’t happen. And now finally we have the #PSP announcement Suggesting a process is involved, so I assume this stating of urgent need isn’t going to immediately translate into calls for it. so Who knows really the figures wanted, from who, when and how? Shouldn’t that all be clear if we are to campaign, or is campaigning not wanted by those deciding all this?