Briefing paper for parliamentary debate.

adambeyoncelowe said:
Personally, I'm done with IiME now.
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I agree to an extent and I feel disappointed in their very public response to the briefing and criticism. But in the spirit of recognising that we're all working to the same goal and that their contribution to that is driving collaborative global research, they should still be supported and we should still be looking to work together. It's a busy time of year for them and off the back of a successful conference, instead of basking in that glory, they've felt slighted and excluded from a parliamentary debate which they initially misunderstood. It's very easy to take things personally and be reactionary when emotions are running high and energy resources are running low, which is most likely what's happened here. We probably all need to take care not to fall into that trap.

eta: Nothwithstanding the personal and unprofessional comment on the FB page which I haven't seen.
eta: I've now read that. It seems unnecessary and understand your stance.
 
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chicaguapa said:
I agree to an extent and I feel disappointed in their very public response to the briefing and criticism. But in the spirit of recognising that we're all working to the same goal and that their contribution to that is driving collaborative global research, they should still be supported and we should still be looking to work together. It's a busy time of year for them and off the back of a successful conference, instead of basking in that glory, they've felt slighted and excluded from a parliamentary debate which they initially misunderstood. It's very easy to take things personally and be reactionary when emotions are running high and energy resources are running low, which is most likely what's happened here. We probably all need to take care not to fall into that trap.

eta: Nothwithstanding the personal and unprofessional comment on the FB page which I haven't seen.
eta: I've now read that. It seems unnecessary and understand your stance.
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Frankly, I'm not a 'fragile' person, but I think they crossed the line. Some of the other replies to me have disappeared when I blocked them, so there's only the one reply to me, I think. I'm actually very upset at their response, however. Mostly the tone, but also calling my posts 'a joke'.

I also don't think it's acceptable that they're accusing other organisations of malice and opportunism when that literally couldn't be further from the truth. They may not like Action for ME (I've been critical myself), but that doesn't give them the right to attack patients.
 
Agreed. Does that mean IiMER aren't part of ForwardME for the same reason (the inclusion of AfME)?
 
I can see both sides of this. From IiME's position it may well look and feel like they've been frozen out of contributing to a Parliamentary briefing document, and there's then been an attempt to 'bounce' them into approving it at the last minute. That doesn't seem to be what actually happened of course - the accounts in this thread give the impression that ME Action didn't have that much advance notice themselves that Carol Monaghan and her colleagues would be appearing before the Backbench Business Committee this week, so the briefing note was prepared to a very tight timetable. But if IiME aren't aware of the sequence of events, and how little time there was to pull this together, it's understandable they might feel slighted and used. Not that this excuses them venting publicly on Facebook, rather than trying to resolve their concerns behind the scenes...

I can only see one response from IiME to their original post, so I obviously I can't make a judgement just how unprofessional their further comments on this issue were. But I'd hope that if someone from ME Action got in touch to explain that there seems to have been some crossed wires, they might calm down a bit and be willing to consider working together in future. I'm assuming that there'll be another, more detailed, briefing put together for the debate that was requested yesterday, and that IiME would want to be involved in putting that together.
 
Stewart said:
I can see both sides of this. From IiME's position it may well look and feel like they've been frozen out of contributing to a Parliamentary briefing document, and there's then been an attempt to 'bounce' them into approving it at the last minute. That doesn't seem to be what actually happened of course - the accounts in this thread give the impression that ME Action didn't have that much advance notice themselves that Carol Monaghan and her colleagues would be appearing before the Backbench Business Committee this week, so the briefing note was prepared to a very tight timetable. But if IiME aren't aware of the sequence of events, and how little time there was to pull this together, it's understandable they might feel slighted and used. Not that this excuses them venting publicly on Facebook, rather than trying to resolve their concerns behind the scenes...

I can only see one response from IiME to their original post, so I obviously I can't make a judgement just how unprofessional their further comments on this issue were. But I'd hope that if someone from ME Action got in touch to explain that there seems to have been some crossed wires, they might calm down a bit and be willing to consider working together in future. I'm assuming that there'll be another, more detailed, briefing put together for the debate that was requested yesterday, and that IiME would want to be involved in putting that together.
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There's a catch in that #MEAction is part of Forward-ME now and so works with all those charities. IiME have said they do not want to work with AfME. I can't see how they can be included given that snag. But maybe this will be the impetus for them to extend an olive branch?

Given that Caroline Monaghan has cross-party support, it would be a pity not to have the same support across charities and voluntary organisations.
 
chicaguapa said:
I agree to an extent and I feel disappointed in their very public response to the briefing and criticism. But in the spirit of recognising that we're all working to the same goal and that their contribution to that is driving collaborative global research, they should still be supported and we should still be looking to work together. It's a busy time of year for them and off the back of a successful conference, instead of basking in that glory, they've felt slighted and excluded from a parliamentary debate which they initially misunderstood. It's very easy to take things personally and be reactionary when emotions are running high and energy resources are running low, which is most likely what's happened here. We probably all need to take care not to fall into that trap.

eta: Nothwithstanding the personal and unprofessional comment on the FB page which I haven't seen.
eta: I've now read that. It seems unnecessary and understand your stance.
Click to expand...
I think Invest in ME do super work. They should be involved in the formation of any documentation going forward and given ample opportunity to so. If they felt slighted, so be it, we need to let it go and appreciate all they do. They want what is best for patients, that is the main thing. We all need to work together....its the same in the States, organisations not trusting one another, patients divided and it achieves nothing. @adambeyoncelowe I think you are being too harsh. All Invest in ME has achieved over the years should not be forgotten and to turn one's back on them is simply extreme in my view.
 
Sunshine3 said:
I think Invest in ME do super work. They should be involved in the formation of any documentation going forward and given ample opportunity to so. If they felt slighted, so be it, we need to let it go and appreciate all they do. They want what is best for patients, that is the main thing. We all need to work together....its the same in the States, organisations not trusting one another, patients divided and it achieves nothing. @adambeyoncelowe I think you are being too harsh. All Invest in ME has achieved over the years should not be forgotten and to turn one's back on them is simply extreme in my view.
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I don't really respond well to being told my concerns about the accusations in their post were 'a joke' and 'embarrassing', plus the general tone of attack. I don't think it's me who is being harsh. They attributed malicious intent, and a desire to hijack the publicity of their conference, to four charities in a knee-jerk response to feeling excluded from a document that arose as a result of an event they didn't want to be a part of.
 
adambeyoncelowe said:
I don't really respond well to being told my concerns about the accusations in their post were 'a joke' and 'embarrassing', plus the general tone of attack. I don't think it's me who is being harsh. They attributed malicious intent, and a desire to hijack the publicity of their conference, to four charities in a knee-jerk response to feeling excluded from a document that arose as a result of an event they didn't want to be a part of.
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I did not see your post on the IiMER FB thread but I did see the response to it which did seem to make some unfair accusations. I have just checked, and the IiMER response to your remove post that you refer to here has now gone, so perhaps they have thought better of that particular comment.

However their post copied at the top of this thread remains in place.
 
adambeyoncelowe said:
I don't really respond well to being told my concerns about the accusations in their post were 'a joke' and 'embarrassing', plus the general tone of attack. I don't think it's me who is being harsh. They attributed malicious intent, and a desire to hijack the publicity of their conference, to four charities in a knee-jerk response to feeling excluded from a document that arose as a result of an event they didn't want to be a part of.
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I haven't seen those posts @adambeyoncelowe....I wouldn't like that being said to me either. Invest in ME were worried that a sanitized version of the truth was being discussed by MPs. I listened to the briefing and one of them mentioned patients being bedbound for 2 to 3 years. That didn't sit well with me, as we know some are bed bound until they pass on. The situation for M.E patients is outrageous, the neglect of the severe unimaginable. The worst of it has to be made visible. My own worry is that alot working on patient's behalf are not severe patients. Invest in ME wants the raw truth out there....that's my take on it. People are dying...that wasn't mentioned yesterday. I was so glad to hear biomedical research being key but the discussion didn't reflect the true horror of our situation. I just want progress and that all working on this keep the severe patients visible always. That is my take on it as a relative newbie to it all.
 
Sigh. Why does there always have to be so much public posturing around ME activism in the UK? It would’ve taken one private email from Invest in ME to any of the individuals involved in ME action UK, or a direct message to the twitter account to air any grievances.

To make such a statement in public is frankly petty and unprofessional, it’s irrelevant to the good work that Invest in ME do elsewhere.

To my knowledge, ME Action UK have been a huge part of the reason why there is a House of Commons debate is currently being considered. It’s something that I think should be applauded and also acknowledged as part of a wider body of ME activism, where it seems that each charity / organisation has its own specialisation.
 
Did Carol Monaghan ask for a briefing paper and if so, who did she ask and was she reading from the briefing paper in her speech yesterday

Is there a copy of the briefing paper to read anywhere

This would just help me to understand a little - does anyone know?
 
Trish said:
I did not see your post on the IiMER FB thread but I did see the response to it which did seem to make some unfair accusations. I have just checked, and the IiMER response to your remove post that you refer to here has now gone, so perhaps they have thought better of that particular comment.

However their post copied at the top of this thread remains in place.
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I'm glad they removed it. This is all such a pity, because I do respect their work.

Sunshine3 said:
I haven't seen those posts @adambeyoncelowe....I wouldn't like that being saud to me either. Invest in ME were worried that a sanitized version of the truth was being discussed by MPs. I listened to the briefing and one of them being bedbound for 2 to 3 years. That didn't sit well with me, as we know some are bedbound until they pass on. The situation for M.E patients us outrageous, the neglect of the severe unimaginable. The worst of it has to be made visible. My own worry is that alot working on patient's behalf are not severe patients. Invest in ME wants the raw truth out there....that's my take in it. People are dying...that wasn't mentioned yesterday. I was so glad to hear biomedical research being key but the discussion didn't reflect the true horror of our situation. I am gone off point now. I just want progress and that all working on this keep to keep the severe patients visibl always.
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I think this is one of the problems with IiME's (original) statement. It gives the impression that what was said in Parliament was scripted by four charities. It was not.

Caroline Monaghan was not reading from a script or from the briefing. Her discussion in Parliament was not the 'briefing' itself. The briefing was a behind-the-scenes document to inform newbies.

The examples she quoted aren't from the briefing either. I suspect they're from her constituents or are from her own research (and there's a lot of info to wade through for newcomers).

If you read the briefing, the wording describes severe patients being bedbound for 'many years or even decades' at a time. It's written in a neutral tone because this has to get cross-party support. It's absolutely clear that it's not a script nor did CM read it out in Parliament.

As for the issues with ME being whitewashed: I don't agree with that either. CM called PACE 'the greatest medical scandal of the 21st century', so she's already given us one of the best sound bites we could hope for! I don't think she's going to sugar-coat this at all, but she simply didn't have time in her very brief request for debate time in the House of Commons to discuss more than the very basic facts.

We need to stick to the facts: the science is poor; research funding is low; quality of treatment varies wildly; many patients are being neglected. Sticking to the facts is the best way to win the debate. There's lots of conjecture that could have made it into the Parliamentary briefing, but I think that's a slippery slope. It's too easy for someone to disagree with our opinions. It's harder for them to disagree with the numbers.

The briefing was sent to CM the day before the event, so it would have been too late to change the content of her speech anyway. Really, it was created so that it could be circulated to the other people who might be drawn to this debate because of what CM said in Parliament. People who have no clue about what's going on with ME.

Dr Carrot said:
Sigh. Why does there always have to be so much public posturing around ME activism in the UK? It would’ve taken one private email from Invest in ME to any of the individuals involved in ME action UK, or a direct message to the twitter account to air any grievances.

To make such a statement in public is frankly petty and unprofessional, it’s irrelevant to the good work that Invest in ME do elsewhere.

To my knowledge, ME Action UK have been a huge part of the reason why there is a House of Commons debate is currently being considered. It’s something that I think should be applauded and also acknowledged as part of a wider body of ME activism, where it seems that each charity / organisation has its own specialisation.
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This is important to remember too. Each charity does something slightly different, and they each have different strengths. Working together gets the best from each of them. They don't always have to agree, but a united front is definitely helpful.

Anyway, I think I've said enough for today! ;)
 
I agree we need a united front. We have mountains to move, last thing we or organisations working on our behalf should be doing is tearing strips off one another. As long as each organization has the patient's best interests at heart, we should be able to move along....it's never smooth sailing is it?!
 
I think iimes tone is sometimes unhelpful and they have chosen often (many would say rightly) to stand aside so therefore expecting inclusion is perhaps unmerited. I think they feel pushed out of forward ME in the past or was it the appg. There was very strong fighting over rituximab with MEa & iime too with issues on both sides imo. Equally it has to be recognised that a lot of shit has gone down over thirty years, many are embittered by the long fight and the failures, look where we are after generations and alot have been working on this over decades. The idea of untied front imo is really an illusion AFAIC, even within groups coming together for forward ME. Eg Jane Colby times was/is very against the main charity accepting CFS as a name, tymes, 25% and IIME very against the CMRC and idea of working with Crawley , white and an MRC effectively refusing to put in the money etc, the huge split in Scotland over what the clinics should be doing , again going down a thymes 25% & iime split was very acrimonious and I think vs MEA , AFME & MERUK.

Whilst there is some coming together with one side on forward ME and meaction coming in too on basic aims and yes that's good, the whole community is in various camps on various things and it can be easy to come into the field newish saying oh dear we all want the same things can't we get along , almost buying into the stereotype of this being an unnecessary, unprecedented divided area full of conflict, without living through all the past. Suffragists, civil rights, Indian independence, northern Irish question aLl burned for years of injustice and suffering with, as a consequence, various groups seeing very different best ways forward and breaking up. As a I say coming together for parliamentary debate now is bleeding obviously right , coming together over name, criteria, working with MRC vs challenging them , direct action vs negotiations, acceptance of a litlle vs demanding more, big tent and broad fatigue criteria vs ME and ICC for research, promoting the hope message of natural recovery vs the severe horror are all dividing areas. I share iimes issues with the main charities record on a lot if these things but iime is mainly a research group and taking a different stance often will leave them more alone. I agree with sunshine3 about their concerns regarding sanitisation, urgency and probably direct criticism of the establishment which iime do and MEA AFME don't so ideally in a parliamentary debate with briefings we DO need all voices heard and reflected because iime represent a portion of patients as do the 25% group, their voice needs to be included too.

All said well done meaction and great a debate might be happening, thirty years on from when the last MP called for it.
 
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I think this looks like a slightly older version of the file (a few typos remain, including one I flagged specifically). I'll see if we can get it updated.

Overall, I'm happy with it. I'd prefer the recommendation to drop GET AND issue a safety warning about it (I suspect that was one of the contentions), but I think it's meant to say NICE should drop GET immediately OR issue a warning on the current guideline (i.e., the focus is on the current, not future, guideline). I'll raise that point too (I missed it on my last read-through).
 
Sunshine3 said:
I think Invest in ME do super work. They should be involved in the formation of any documentation going forward and given ample opportunity to so.
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IiME have made it clear that they will not collaborate with any charity who works with AfME or the MEA. So even if they had been asked to contribute, and with more time to do so, I'm sure their response would have been the same, perhaps also citing that they were too busy in the run up to the conference. Most likely it would have led to a similar public FB post distancing themselves from the briefing document due to the collaboration with 2 charities IiME won't work with.

I think they've scored a bit of an own goal tbh. I had no idea until now that IiME were standing so alone and refusing to work with other charities and that they weren't part of ForwardME. ​
 
Cinders66 said:
I agree with sunshine3 about their concerns regarding sanitisation, urgency and probably direct criticism of the establishment which iime do and MEA AFME don't so ideally in a parliamentary debate with briefings we DO need all voices heard and reflected because iime represent a portion of patients as do the 25% group, their voice needs to be included too.
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No-one has stopped IiME's voices being included. They have said they wouldn't have contributed to the one we're discussing now even if they had been asked to, and they can still submit something if they want to directly criticise the establishment and bring in all the dirt. 25% Group for ME have supported the briefing, but are also free and able to submit their own. As is presumably anyone who feels they haven't be adequately or accurately represented by a charity or group that was involved in this.
 
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