Carol Monaghan granted a Backbench debate (UK Parliament) Thursday 24th January 2019

MSEsperanza said:
Thank you to all who are working on this.

I only was able to have a quick glance. Both Parliamentary Briefing documents (the updated common document and the extra #MEAction 6-pager) seem fine to me.

I am not sure about the following statements in the #MEAction's 6-pager, but atm am not able to check the facts. Just thought I'll let you know:

https://www.meaction.net/wp-content/uploads/2019/01/MEAction_UK_Parliament_Briefing_Full_Jan19.pdf)


Is there a reference for this figure?



The referring endnotes are incomplete, only naming authors and year of publication:

*9 = Neary et al. (2008), Peterson et al. (1994)

*10 = Miller et al. (2015)

*11= Snell et al. (2013)

(Also my post remains incomplete, apologies for that).
Edited for clarity.
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Thanks for flagging this up. I assume the 95% figure comes from here:
A systematic review describing the prognosis of chronic fatigue syndrome
But it should have been referenced, as should those endnotes have been completed. I'll feed this back to #MEAction and see if there's any way of getting it fixed.
 
MEMarge said:
Thanks @Gecko for all that you and other MEAction people are doing
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Thank you all for the feedback, it has been noted and we will try to fix before the debate, but as you can imagine, there are quite a lot of things going on.

The briefing we have produced, as you can see, it's essentially tailored made for this motion and so we didn't have much time to publish and send to all once this was announced, hence some things might have been missed. In any case, I do think it's a great document for this debate and it will help MPs immensely.

ps: keep emailing your MPs!!! :)

Espe
 
Cheesus said:
MEA says it is a 2pm.

https://www.meassociation.org.uk/2019/01/invite-your-mp-parliamentary-debate/

Edit: Though that is not reflected in the timetable on the Parliament website, which still has it as sometime vaguely in the morning.

https://calendar.parliament.uk/calendar/Commons/All/2019/1/24/Daily
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That parliament website confused me too, but I think that the 'main chamber' section lists all the main chamber's business that day, rather than just being what comes before the others things listed.
 
Barry said:
Do we know how much time has been allocated to this debate?
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Some Google-fu has led me to conclude that it will be 3 hours.

Now that I am looking at the parliament website correctly (thanks @Esther12), I think a 2pm start is a safe bet. An adjournment debate (the only business remaining after our spot) is typically half an hour and Parliament usually ends for the day at 17:30. A backbench debate can last either 90 minutes, 3 hours or 6 hours.

Putting all that together, it looks like a 3 hour debate starting at 2.
 
Cheesus said:
Some Google-fu has led me to conclude that it will be 3 hours.

Now that I am looking at the parliament website correctly (thanks @Esther12), I think a 2pm start is a safe bet. An adjournment debate (the only business remaining after our spot) is typically half an hour and Parliament usually ends for the day at 17:30. A backbench debate can last either 90 minutes, 3 hours or 6 hours.

Putting all that together, it looks like a 3 hour debate starting at 2.
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It might go for up to 3 hours starting from 2/2.30pm (parliamentary business allowing that starting time!). Last WOW debate was delayed by several hours but let's hope this is not the case!

We will be live tweeting and posting on social on the day to provide the most accurate info as we can! And if we do have additional info before that, we will make sure everyone has it! ;)

Espe
 
EspeMor said:
It might go for up to 3 hours starting from 2/2.30pm (parliamentary business allowing that starting time!). Last WOW debate was delayed by several hours but let's hope this is not the case!

We will be live tweeting and posting on social on the day to provide the most accurate info as we can! And if we do have additional info before that, we will make sure everyone has it! ;)

Espe
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What is WOW??
 
Virtual Demonstration in support of the ME debate motion:

https://www.meaction.net/2019/01/22/join-the-virtual-demonstration-in-support-of-the-me-debate/



To reach a wider audience and garner more press attention, join us in demonstrating our support for the motion across social media on the day of the debate.

1. Take a photo of yourself holding a sign supporting the ME debate

2. Post the photo to social media using the hashtag #MEdebate

3. Ask your friends and family to get involved
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Another result and fulsome reply! Peter Aldous Waveney Suffolk MP

Dear Ms R
Thank you for contacting me about ME, which can be a painful and extremely debilitating condition, impacting on the quality of life of an individual.
While there is currently no cure for ME, there are treatments that may help to ease symptoms, although no one form of treatment may suit every patient. Patients should be involved in decision-making throughout every stage of their care. Furthermore, patients should be offered information about local and national self-help groups and support groups for people with ME and their carers.
Research into this area is vital. The Medical Research Council (MRC) and the National Institute for Health Research welcome high quality applications for research into all aspects of ME. ME research is a current MRC priority area and so far over £2 million has been invested into this research area.
The majority of services for people with ME are the responsibility of local clinical commissioning groups. To assist diagnosis, the National Institute for Health and Care Excellence (NICE) produced clinical guidance on the diagnosis, treatment care and support of children and adults with ME.
NICE is currently reviewing these guidelines. This process will require thorough and careful consideration, and NICE expect to publish new guidelines on ME in 2020. Ministers advise that these new guidelines will take into account patients' concerns about the PACE trials and the effectiveness of some existing recommendations.
I do have commitments tomorrow which may make it difficult for me to participate in and to attend the whole debate, though I shall try to be in the Chamber for at least part of the debate and if I feel that there are specific points that need to be made I shall raise them.
Thank you again for taking the time to contact me.
Yours,
Peter Aldous
 
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