Briefing paper for parliamentary debate.

Kalliope

Kalliope

Senior Member (Voting Rights)
This post and some others following have been moved from another thread.

A bit disturbing Facebook post from Invest in ME just now...

Apparently a debate in parliament is happening today with Carol Monaghan picking up the thread from her previous debate.
However, the document from which she is reading has had no input from invest in ME Research - we were not asked to give any.
This document was planned and produced without any contact being made to Invest in ME Research – other than an email less than 24 hours before the document was to be discused in parliament and distributed - and then we were simply given a request to rubber-stamp it.

You can read the rest of the post here on Facebook.
I do hope this is something that can be sorted out.
 
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Kalliope said:
I hope this was the correct thread.

A bit disturbing Facebook post from Invest in ME just now...

Apparently a debate in parliament is happening today with Carol Monaghan picking up the thread from her previous debate.
However, the document from which she is reading has had no input from invest in ME Research - we were not asked to give any.
This document was planned and produced without any contact being made to Invest in ME Research – other than an email less than 24 hours before the document was to be discused in parliament and distributed - and then we were simply given a request to rubber-stamp it.

You can read the rest of the post here on Facebook.
I do hope this is something that can be sorted out.
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As the person who drafted the NICE guidelines part of the briefing (which ended up getting revised quite a bit due to length), I know IiMER weren't specifically excluded. The briefing was originally just going to be written by #MEAction UK with help from the ME Association.

It was never intended to be a consensus document. But then Action for ME and The ME Trust ended up doing sections because of issues around man-power. (I recommended TYMES Trust should write a section on children, for instance, but there wasn't time to do this, nor the capacity.)

It's meant to be a very brief brief. As in, only a page for each of the main issues. That meant lots of stuff about the politics had to be taken out, so that we just have the core details.

I think IiMER is unhappy that it doesn't go into the politics, but I don't think there was space to go into those things in the document that was created. Really, I don't know why it was circulated to them if they weren't able to contribute, but I suppose it's better that they knew in advance what was included rather than finding out after the fact.
 
I should add that Science 4 ME contributed a section too, I think. Again, that was because someone volunteered/suggested it, I believe.

In general, #MEAction produces the briefings on its own, because it's easier than negotiating between multiple charities. I think that in future that'll be even more likely, given the logistics of pulling this one together (and the flak received). Each charity normally publishes its own responses to key events anyway, so this isn't unique to #MEAUK.
 
Thanks for the explanation, @adambeyoncelowe. I gather from this that you are involved in MEActionUK and that it is this organisation that is coordinating working with Carol Monaghan on raising ME in Parliament.

It makes sense that a single organisation coordinates her communication with the ME community, and it's good to hear you are bringing in other organisations to help with information.

As I understand it, the document in question is a briefing document for Carol Monaghan to use to support her request for a Parliamentary debate, and as a briefing document for MP's who may take part in such a debate.

It seems that IiMER have misunderstood this and think it is a speech to be read out by Carol Monaghan in a Parliamentary debate today. I hope someone who is in touch with IiMER can explain this to them.
 
Trish said:
Thanks for the explanation, @adambeyoncelowe. I gather from this that you are involved in MEActionUK and that it is this organisation that is coordinating working with Carol Monaghan on raising ME in Parliament.

It makes sense that a single organisation coordinates her communication with the ME community, and it's good to hear you are bringing in other organisations to help with information.

As I understand it, the document in question is a briefing document for Carol Monaghan to use to support her request for a Parliamentary debate, and as a briefing document for MP's who may take part in such a debate.

It seems that IiMER have misunderstood this and think it is a speech to be read out by Carol Monaghan in a Parliamentary debate today. I hope someone who is in touch with IiMER can explain this to them.
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Exactly right. I think they've got it mixed up somewhat.

Yes, I'm part of #MEAction UK, along with a few others on here. But I volunteer for a few charities, so I'm not exclusive to them (for instance, I'm on the management committee for Schools OUT UK, which is the charity behind LGBT History Month UK, and I used to edit their magazine, when they had one).

Sarah Reed was the lead on the parliamentary briefing. It was her baby. Normally, the briefs are all written in-house and only carry the #MEAUK branding. I think this one got a bit complicated because, well, it's frankly a huge job to condense every major problem with ME research and treatment into one document.
 
While we're on the subject of MEAction UK, I wonder whether it would help the UK members of S4ME if someone who is a member of both could tell us a bit about the UK organisation - who runs it, how it functions, how to get involved, is there a committee etc. At the moment, I'm somewhat bemused.

You seem to be doing good work, but I can't find a website. I find FB pages unsatisfactory for this, as not everyone is on FB, and communications get lost down the timeline.

This is not a criticism, more a 'well done and can you tell us more...'
 
I think it is so good to have had the very successful Invest In ME Conference last week & then the separate political track taking one small step forward today.

Progress on all fronts is needed and to be celebrated. So few, achieving so much with very limited resources.

Edited: process amended to progress
 
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For MOD attention

Trish said:
While we're on the subject of MEAction UK, I wonder whether it would help the UK members of S4ME if someone who is a member of both could tell us a bit about the UK organisation - who runs it, how it functions, how to get involved, is there a committee etc. At the moment, I'm somewhat bemused.

You seem to be doing good work, but I can't find a website. I find FB pages unsatisfactory for this, as not everyone is on FB, and communications get lost down the timeline.

This is not a criticism, more a 'well done and can you tell us more...'
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https://www.s4me.info/threads/uk-tu...-carol-monaghan-to-ask-for-debate-on-me.4435/

This thread and that with the recording of the Parliamentary clip overlap in items discussed but different S4ME members seem to be reading them.


I didn't know of this thread for example. The other thread was started last night.
Just would like to ensure that we are not in each other's way. I wrote to my MP after seeing the clip this afternoon but had no idea that this other work was ongoing. I like individuality but we need to be singing from the same hymn sheet.

ED: very much support @Trish's post in case that isn't clear.
ED: added link to other thread
 
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Trish said:
While we're on the subject of MEAction UK, I wonder whether it would help the UK members of S4ME if someone who is a member of both could tell us a bit about the UK organisation - who runs it, how it functions, how to get involved, is there a committee etc. At the moment, I'm somewhat bemused.

You seem to be doing good work, but I can't find a website. I find FB pages unsatisfactory for this, as not everyone is on FB, and communications get lost down the timeline.

This is not a criticism, more a 'well done and can you tell us more...'
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I'm also an MEAction volunteer. I believe there are around 50 of us in the UK and we all communicate on Slack, a team messaging workspace set up by MEAction. There is a UK one and most likely a US one that we're not on. There are various representatives who head up the different areas, for example Parliamentary (Sarah Reed as Adam mentioned above), NICE guidelines (2 reps), Social Media, and we discuss and organise various campaigns such as MillionsMissing and now the fundraisers. I doubt they were elected formally to a committee, more that they put their hand up and enough people agreed to them doing it. Everything is discussed transparently on Slack and we are all asked to comment, review anything that's going out. It's a collaborative effort.

MEAction is a US organisation. Jennifer Brea and others drive many of the initiatives and always ask the UK volunteers for their thoughts on how best to approach or release something in the UK to take into account the different landscape, history, culture. Recently they tried to co-ordinate delivering some post-MillionsMissing campaign messages to Jeremy Hunt to coincide with when they were doing the same in the US to Francis Collins, for maximum impact. But this didn't end up working out because it was decided in the UK that this wouldn't be effective in the same way as in the US (I forget the specifics).

Wrt joining up, it's not an exclusive club by any means and there is an invitation to join the UK team of volunteers on the MEAction UK website https://www.meaction.net/uk/. The focus is very much on advocacy and sharing MEAction's goals of building community from the grassroots up. That doesn't work for everyone and many people prefer to walk to the beat of their own drum or have other ideas about how to achieve more change for ME. My impression is that the UK base has grown enormously since the success of Unrest in the UK and then MillionsMissing, so they're harnessing the drive of those who've become involved with either/or and have subsequently joined up as volunteers, whilst nurturing and maintaining the collaborative environment that has been created.

That said, we do really need a UK-based MEAction employee to drive UK-specific initiatives and work on the ground here as that's the one thing we're really missing. Specifically someone with experience in the charity industry and someone who doesn't have ME and can therefore reliably work on this full-time. So that's what we're fundraising for atm. https://www.meaction.net/grow-our-uk-team/

HTH
 
Wrt to the briefing document, I'm bemused by the 'controversy' tbh. It was suggested openly on Slack, agreed by all those involved with MEAction who chose to review the document, suggest changes etc. And the workload for producing the document was subsequently shared out to the other charities who'd collaborated with MEAction on the Unrest campaign and the screening in parliament last year, so with whom we already had a working relationship. I've no idea how those other charities collaborated with their 'members' and/or agreed what was or wasn't included. But from MEAction's point of view, it was transparent and contributed to by people who have ME or understand it.

From my own point of view, MEAction were quick off the mark to identify the need for this briefing for a debate and then co-ordinated it. That's something they should be praised for, not criticised by other charities whose focus is on other vital areas, such as research because that's what they do well and where they believe change is going to come from. It's also really important to remember the audience and aim of the briefing. It was for MPs to understand the headline issues. You're never going to get every single issue down in a briefing document that most MPs will glance an eye over 2 minutes before any debate. ​
 
I think Invest in ME do some good work, but also that their comments on social media can seem weirdly prickly, and a bit self-absorbed.

eg: "Yet this document seems to have been timed to be released on the wave of success and publicity from our events - yet without our input, and at a time where the charity staff are the busiest."

It seems more likely that the timeline was shaped by what was happening in the Commons, rather than the IiME conference.
 
Thank you @chicaguapa for that explanation about MEAction UK. It sounds like a positive active group. When a new group is evolving, it's probably inevitable that those unaware that it is happening are a bit bemused.

It does sound like IiME misunderstood the source of your document. I hope someone from MEAction has managed to contact them and explain.
 
Esther12 said:
I think Invest in ME do some good work, but also that their comments on social media can seem weirdly prickly, and a bit self-absorbed.

eg: "Yet this document seems to have been timed to be released on the wave of success and publicity from our events - yet without our input, and at a time where the charity staff are the busiest."

It seems more likely that the timeline was shaped by what was happening in the Commons, rather than the IiME conference.
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Indeed. It's not clear if they were aware of what was happening in the Commons and it's likely that they weren't as a) it's not their focus b) they have been knee-deep in planning their conference. Even more fortuitous then that 4 other ME charities had the time and resources to do so.

The FB comments under their post are worrying. Airing our dirty laundry in public is not a good idea and we really need to take the controversy out of ME if we want it to be take seriously and that includes from those in the ME community. The idea from some of those comments that ME charities are pitched in opposition to each other isn't the way forward and as a relative newcomer to ME (2.5 years) I'm constantly exasperated by the in-fighting. Perpetuating the idea that a charity (or 4) are trying to control the narrative to the exclusion of all others is very far from the truth and unhelpful.

We're all working towards the same goal. That ME was discussed in the Commons yesterday with the aid of a briefing paper collaboratively produced by a number of charities who had previously arranged a screening of Unrest in parliament, shortly after a highly successful research conference is a good news story and helps to build momentum. Hopefully those who don't recognise that are a minority.
 
Trish said:
Thank you @chicaguapa for that explanation about MEAction UK. It sounds like a positive active group. When a new group is evolving, it's probably inevitable that those unaware that it is happening are a bit bemused.
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I also wonder if this comes down to cultural differences and our need for more transparency in the UK, which perhaps hasn't been forefront in the minds of the US team. As usual, many of the volunteers have ME and this affects what is and hasn't been possible in the past. Most of them are focussing on their 'jobs' within the group and don't have the time or the energy to share what they're doing with others outside it. But they genuinely want to collaborate with other UK charities and build a much bigger movement and I know for a fact that they have reached out to all the UK charities with this aim and the ones they are currently collaborating with (re Unrest screening and this briefing document) are those who wanted to do that.
 
I should add: Invest in ME Research have been asked to collaborate with #MEAction UK multiple times, and either declined every time or didn't reply. That's why the charities involved in the Parliamentary screening ended up working together, and not IiMER.

I should also add that the charities who were involved specifically said they had people they could dedicate to 'their' section. IiMER made it clear previously that they're very small.

That said, trying to collaborate on a document of this kind between four charities, each of which has slightly different focuses, was a very time- and energy-consuming process. I'm not sure it would have been feasible to include even more organisations. It's not like Forward-ME, where there's a Chair who can make executive decisions.

It seems very odd to me that IiMER is crying foul when they didn't want to work with us before. I'm with Esther in thinking their Facebook post was prickly (and self-absorbed). They have a direct line of communication with #MEAN/#MEAUK. They could have easily sorted this out professionally instead of posting something with lots of half-truths to distort what's really happened. It's counterproductive.

Personally, I'm done with IiME now.
 
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I am relatively new to the active ME world, though I've had ME for decades. I have been a member of the MEA for some years, but only as a recipient of their magazine and occasional reader of their website.

It is only since joining forums in the last couple of years that I have become aware of all the different ME organisations in the UK and the different roles they play. I have gathered that there is some history of disagreements between some of the organisations, which I guess is inevitable with small organisations largely run by volunteers and with different aims and approaches.

I suspect that this current misunderstanding has roots in past events most of us are unaware of. To me I see IiMER running fantastic successful conferences, the MEA providing helpful information like their purple book and providing help and advice to patients, as well as raising funds for research including the ME Biobank, and supporting advocacy action where they can.

MEAction UK had an unusual origin for UK organisations, in being a spin-off from an organisation started in the USA, and still very new as an active group in the UK with a focus on advocacy.

It seems to me to be a positive development and it's great that the group currently working on this are open to working with the existing organisations.

I wish I had the energy to take part, but what little energy I have for ME stuff goes into helping to run this forum. I wish you all well and thank you for what you are doing.
 
To add a bit of context from the S4ME side of things, and to update our members on a decision that the committee has taken.

We received an enquiry on Monday, approx midday, asking if we wanted to add S4ME's name to the list of organisations supporting Carol Monaghan's request for a debate in Parliament, with a deadline of Tuesday 2pm. The committee felt that this was something that would definitely be supported by the majority of our members and so were able to easily reach an agreement to add the forum's name to the list of supporters.

In communicating with MEAction further on Tuesday morning, we then discovered that there was this supporting document which then meant we had to review the document before the deadline to confirm that the decision we had taken was still the correct one. Putting the forum's name behind a document written by other orgs would be something that we would have seriously considered putting before you members had the time been available; I myself was also uneasy about a few parts in the document. But we reached a consensus to support the document in order to support Carol's bid for a debate and let MEAction know our decision before the deadline.

Given that the forum in all aspects runs completely on volunteers efforts, we completely understand the challenges in drawing such a document together, especially when multiple orgs are working on different sections. We, as a committee, found the deadline tight in order to be able to responsibly review the document, especially as we are multi-national in make up, and certainly would have appreciated more time to be able to do so.
 
Andy said:
To add a bit of context from the S4ME side of things, and to update our members on a decision that the committee has taken.

We received an enquiry on Monday, approx midday, asking if we wanted to add S4ME's name to the list of organisations supporting Carol Monaghan's request for a debate in Parliament, with a deadline of Tuesday 2pm. The committee felt that this was something that would definitely be supported by the majority of our members and so were able to easily reach an agreement to add the forum's name to the list of supporters.

In communicating with MEAction further on Tuesday morning, we then discovered that there was this supporting document which then meant we had to review the document before the deadline to confirm that the decision we had taken was still the correct one. Putting the forum's name behind a document written by other orgs would be something that we would have seriously considered putting before you members had the time been available; I myself was also uneasy about a few parts in the document. But we reached a consensus to support the document in order to support Carol's bid for a debate and let MEAction know our decision before the deadline.

Given that the forum in all aspects runs completely on volunteers efforts, we completely understand the challenges in drawing such a document together, especially when multiple orgs are working on different sections. We, as a committee, found the deadline tight in order to be able to responsibly review the document, especially as we are multi-national in make up, and certainly would have appreciated more time to be able to do so.
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I think the time issue is a problem multiple people have raised, and is totally fair. Really, such a document, if it's to have support from across organisations, needs to be that way from the start.

Meanwhile, I've found IiME's response on Facebook to me specifically to be personal and unprofessional, so I've removed myself from the discussion over there. It's such a shame, really, because the conference looked like a really successful event.
 
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