UNREST screening and reception at the Speaker's House, House of Commons

[NelliePledge]

To be honest what matters is how many MPs came and what the messages were and what if any a plan is now on various issues . I keep hearing of the need for more research funding but via what path, do the charities actually think we could & should be getting more money given because if not loads of people are just wasting their breath saying that's what needs to happen because without a plan or lobbying it won't.

#MEaction seem more focused on GET and NICE, that might have some feasible action plan via petitions etc.

It's good if some MPs now know more and care more about the issue and well done to those with limited energy for going and representing us but I'm not sure how much lasting impact now the APPG is over

When I go to see my MP I'm going to say that the IIME centre of Excellence at Norwich needs to be supported with govt funding.

 

[Cinders66]

When I go to see my MP I'm going to say that the IIME centre of Excellence at Norwich needs to be supported with govt funding.

That's good but to get that I'd say we probably need that to be a focus or lobby that lots are signed up to doing to make a difference. When you say government funding from where do you mean, DoH ? What is it IMME need money for the their centre, is it to pay for researchers and Drs or for bricks n mortar, I haven't followed that for a while?

 

[Jenny]

https://twitter.com/i/web/status/922854728547086337

https://twitter.com/i/web/status/922846487389921280

https://twitter.com/i/web/status/922820664536588289

What were the Q and As worse than?

 

[hinterland]

What were the Q and As worse than?

I’d assume something along the lines that, for many people, the reality of everyday life with ME can be even more devastating than portrayed in the film? It isn’t redeemed by a love story, etc.

But I wasn’t there so perhaps someone else can report back on this.

 

[Jonathan Edwards]

That's good but to get that I'd say we probably need that to be a focus or lobby that lots are signed up to doing to make a difference. When you say government funding from where do you mean, DoH ? What is it IMME need money for the their centre, is it to pay for researchers and Drs or for bricks n mortar, I haven't followed that for a while?

Government funding will only come through MRC, NIHR or BBSRC or a similar research council. That means that projects have to be assessed by peer review. There is no mechanism for funding projects chosen by advocates. I think that is right because otherwise you get the sort of advertising we saw from MEGA. The best research groups are often the ones people know least about because they are modest about their work.

I think the session went very well and I think it is no mean achievement to have a film like this shown at HP with several MPs attending. It will be a huge boost for Jen Brae and the whole advocacy project trying to get international collaboration.

Edit: The Q and A raised further issues about problems with service provision and the experience of patients. It seemed very constructive to me.

 

[Gingergrrl]

Congrats to @JenB (if you are reading this) and beautiful picture of you and Jessica Taylor! I saw the screening in Los Angeles about a month ago and am thrilled that people are now able to see Unrest in the UK and hopefully around the world.

 

[NelliePledge]

I’d assume something along the lines that, for many people, the reality of everyday life with ME can be even more devastating than portrayed in the film? It isn’t redeemed by a love story, etc.

But I wasn’t there so perhaps someone else can report back on this.

I'd also assumed worse meant even more hard hitting about the UK situation, sounds from @Jonathan Edwards comments that was the case

 

[NelliePledge]

Government funding will only come through MRC, NIHR or BBSRC or a similar research council. That means that projects have to be assessed by peer review. There is no mechanism for funding projects chosen by advocates. I think that is right because otherwise you get the sort of advertising we saw from MEGA. The best research groups are often the ones people know least about because they are modest about their work.

I think the session went very well and I think it is no mean achievement to have a film like this shown at HP with several MPs attending. It will be a huge boost for Jen Brae and the whole advocacy project trying to get international collaboration.

Edit: The Q and A raised further issues about problems with service provision and the experience of patients. It seemed very constructive to me.

So when talking to my MP in a few weeks time I'm now thinking I should say that the UK funders need to commit to an excercise like the one in the US to fund Centres of Excellence. i might mention IIME efforts but that it is a massive ask to fund something like that through crowdfunding, the charities can fund smaller projects but we won't manage to solve this, or find useful treatments without government funding. Does that sound like a reasonable line to take??

 

[Jonathan Edwards]

So when talking to my MP in a few weeks time I'm now thinking I should say that the UK funders need to commit to an excercise like the one in the US to fund Centres of Excellence. i might mention IIME efforts but that it is a massive ask to fund something like that through crowdfunding, the charities can fund smaller projects but we won't manage to solve this, or find useful treatments without government funding. Does that sound like a reasonable line to take??

I am not a great fan of 'centres of excellence'. What matters is that money is allocated to people with good ideas and methodology and to necessary infrastructure. That might be in small groups or large groups anywhere. The one thing we need to fund more than anything else to my mind is the Biobank, because it feeds in to everything else.

I managed to develop rituximab for RA without any government funding. There was never really any useful government funding for rheumatoid arthritis research. It was all done by charities. I think people need to be aware of the reality of that. But if people start publishing good work in ME then grants should come - wither from charities like ARUK or government. A number of groups are finding abnormalities in mitochondrial function just now. Quite what that means I am not sure but if it is reproducible it provides a reliable base on which to build. The problem in the past is that no reliably replicable data has been produced.

 

[NelliePledge]

I am not a great fan of 'centres of excellence'. What matters is that money is allocated to people with good ideas and methodology and to necessary infrastructure. That might be in small groups or large groups anywhere. The one thing we need to fund more than anything else to my mind is the Biobank, because it feeds in to everything else.

I managed to develop rituximab for RA without any government funding. There was never really any useful government funding for rheumatoid arthritis research. It was all done by charities. I think people need to be aware of the reality of that. But if people start publishing good work in ME then grants should come - wither from charities like ARUK or government. A number of groups are finding abnormalities in mitochondrial function just now. Quite what that means I am not sure but if it is reproducible it provides a reliable base on which to build. The problem in the past is that no reliably replicable data has been produced.

Thanks that's useful to know

 

[justy]

I am not a great fan of 'centres of excellence'

I think the idea of the Centre of Excellence in Norwich is that it will both research and treat patients. Isnt it about time we had an 'excellent' place where PWME could actually see a Dr who understands M.E? Isnt that a good thing?

 

[A.B.]

There is no mechanism for funding projects chosen by advocates. I think that is right because otherwise you get the sort of advertising we saw from MEGA.

Do you think the Norwegian model of user-defined research will turn out to be flawed? In that model, research grants have to pass two rounds of review, first by patients (presumably representatives of major patient organizations), then by researchers.

 

[charles shepherd]

So when talking to my MP in a few weeks time I'm now thinking I should say that the UK funders need to commit to an excercise like the one in the US to fund Centres of Excellence. i might mention IIME efforts but that it is a massive ask to fund something like that through crowdfunding, the charities can fund smaller projects but we won't manage to solve this, or find useful treatments without government funding. Does that sound like a reasonable line to take??

It partly depends on how you want to define a Centre of Excellence for ME/CFS

I would define it as a hospital or university centre where there are clinicians who are genuinely interested in ME/CFS, and are seeing plenty of patients, combined with links to researchers looking at various aspects of ME/CFS

Using this definition I would say that we have one Centre of Excellence here in the UK - the one in Newcastle where Julia Newton et al are researching autonomic dysfunction, muscle pathoogy, sleep etc, as well as providing a good clinical service

In the USA I would say that the work being done by Jose Montoya et al at Stanford would be a Centre of Excellence

At the MEA we are trying to develop a Centre of Excellence for ME/CFS at Oxford (based on the above definition) and a rather special one at the London School of Hygiene and Tropical Medicine, and the Royal Free Hospital (where two components of the ME Biobank are based) and at the locations where we are collecting blood samples

I know there are plans to also set up a Centre of Excellence in Norwich but I don't know if there is a clinical service there with a strong interest in ME/CFS that is linked to the research work taking place on the microbiome

CS

 

[Jonathan Edwards]

I think the idea of the Centre of Excellence in Norwich is that it will both research and treat patients. Isnt it about time we had an 'excellent' place where PWME could actually see a Dr who understands M.E? Isnt that a good thing?

That does not seem to be what we are talking about, Justy. We want all PWME to be able to see a doctor who understands what is known about the illness and what is known about the value of treatments, but we need that in all areas. At the moment nobody understands the illness so it is not a reality. As Charles says, perhaps the best clinical centre with a research base is Newcastle. There are also good links between clinicians and researchers in London, but things are still fragmented, as we all know.

Once we know something about how to manage the illness that can be rolled out into a clinical service everywhere, but at present as far as I can see nothing useful is known, beyond the common sense that many physicians try to apply. The priority at the moment is to do the research to build up knowledge.

 

[Cinders66]

And in the UK are we going to carry on privately funding small research projects with a helping hand from the NIH until we have established the illness. or ask more of the funders to put money in ?

If the answer is that funders can't be asked to put in more money i.e. We carry on as we are I think that should be made clear to patients because many think that the charities in our behalf are trying to extract more money. You can argue they are trying to encourage researchers to apply the usual way through awareness etc but many think that more is going on from that and want more than that. Vague statements about more needs to be done for this field we hear all the time - but outside NICE and GET I personally do not see the specifics of that in terms of clinical care, provision and care for the severely ill And education & research.

 

[Yogi]

http://www.jaytay.co.uk/2017/10/25/unrest-premiere-and-parliamentary-screening/

 

[Jenny TipsforME]

Just seen this thread. All MPs were invited. It wasn’t reliant on the EDM 271 campaign emails though they did also mention it.

40 MPs attended which I believe works out as 1 in 16 of all MPs, which is a great result A list of who attended does exist.

 

[Demepivo]

There is an MEA write up of the screening on their website by Charles Shepherd.

http://www.meassociation.org.uk/201...ch-genuine-interest-in-mecfs-26-october-2017/

Given the fact that MPs are busy people, and constantly moving from one meeting room to another, it was great to see how many stayed for all the presentations and for the film – as well as others who just popped in for a short while. I cannot recall a parliamentary meeting, including many years of attending the All Party Parliamentary Group on ME meetings, where we have had so much genuine interest in ME/CFS – and this included several high-profile names from all political parties and from all parts of the UK.

The MEA did well in putting on the event but they failed to mention other important people involved like the Unrest team, ME Action Network UK, Sarah & Andy Reed who lobbied MPs and all the patients who spoke to their representatives (IMO).

 

[charles shepherd]

There is an MEA write up of the screening on their website by Charles Shepherd.

http://www.meassociation.org.uk/201...ch-genuine-interest-in-mecfs-26-october-2017/



The MEA did well in putting on the event but they failed to mention other important people involved like the Unrest team, ME Action Network UK, Sarah & Andy Reed who lobbied MPs and all the patients who spoke to their representatives (IMO).

Mea culpa - you are quite right!

So thanks for spotting this important omission

I met Sarah at the do and will ask Russ if we can add these names to the 'thank you' list on the MEA website summary

CS

 

[charles shepherd]

Mea culpa - you are quite right!

So thanks for spotting this important omission

I met Sarah at the do and will ask Russ if we can add these names to the 'thank you' list on the MEA website summary

CS

I have just added this to the MEA Facebook coverage:

I also need to thank ME Action Network UK, Sarah & Andy Reed who lobbied MPs, and all the patients who spoke to their representatives. We will add this to the website posting in due course.

CS