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

Suffolkres said:
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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Well at least he might make it @Suffolkres.

it baffles me though why the staff so often feel it necessary to waste everyone’s time by throwing in unnecessary standard paragraphs. As if you don’t already know all that info far better than them. A simple response with the final paragraph would have been perfectly adequate and a lot less annoying. Sorry for moaning - it’s one of my pet hates.
 
NelliePledge said:
Well at least he might make it @Suffolkres.

it baffles me though why the staff so often feel it necessary to waste everyone’s time by throwing in unnecessary standard paragraphs. As if you don’t already know all that info far better than them. A simple response with the final paragraph would have been perfectly adequate and a lot less annoying. Sorry for moaning - it’s one of my pet hates.
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I know, .......teaching me with 20 of battling to suck eggs, but at least I can throw his expressed knowledge of ME and quote it to the CCGS, his CCG excuse my French....( bast**ds) who are tricky to say the least and with whom I am doing battle as I speak!
 
Geez what’s the point of writing to MPs for objective scrutiny if they’re going to reply bsck that and tell you how much a priority your highly debilitating illness is, with an array of treatments available it seems to be targeted to the individual, a glorious pick n mix of CBT and GET or GET alone or simply delicious CBT. I suppose if he goes despite not feeling he needs to make any Points, I mean what’s to say, he might still vote...

So the charities are calling for a parliamentary debate because everything’s going swimmingly

Edit it seems from above this might be standard fobbing off material added in by staff so maybe he himself has more knowledge
 
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Had a response from Nicky Morgan to whom I had sent good wishes for the debate. She commented “ I hope we can do you and all other sufferers justice.” Good words.

She keeps popping up in Brexit so I had wondered if she might have other commitments. Glad to have it confirmed that she will be there tomorrow.

Do hope we have a good turnout..
 
Cinders66 said:
Geez what’s the point of writing to MPs for objective scrutiny if they’re going to reply bsck that and tell you how much a priority your highly debilitating illness is, with an array of treatments available it seems to be targeted to the individual, a glorious pick n mix of CBT and GET or GET alone or simply delicious CBT. I suppose if he goes despite not feeling he needs to make any Points, I mean what’s to say, he might still vote...

So the charities are calling for a parliamentary debate because everything’s going swimmingly

Edit it seems from above this might be standard fobbing off material added in by staff so maybe he himself has more knowledge
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The issue is his home CCGS are out of order and need to be put down with a firm foot! They are pushing for what patients don't want and they are running a fatigue clinic not an ME clinic. Sheep and goats.... And they are in charge of a contract covering 2.5 million population!
 
My MP (Scott Mann) won't be able to make it:

"Many thanks for taking the time to contact Scott regarding the ME Debate on January 24th.

Unfortunately, due to prior commitments, Scott is unable to attend the event. However, he will ensure to request a briefing.

In the meantime you may be interested to know that at Scott's recent surgery he met with a constituent who suffers with ME where they discussed in detail the effect of the condition which Scott is sympathetic too. They also discussed the treatment available and the MAIMES campaign which appears to be gathering momentum.

Please feel free to contact us again should you wish to discuss this further."
 
Binkie4 said:
Had a response from Nicky Morgan to whom I had sent good wishes for the debate. She commented “ I hope we can do you and all other sufferers justice.” Good words.

She keeps popping up in Brexit so I had wondered if she might have other commitments. Glad to have it confirmed that she will be there tomorrow.

Do hope we have a good turnout..
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Great news as an ex cabinet minister and current chair of the Treasury Select Committee she adds political weight to our cause.
 
My MP will try to attend at the end as they have another engagement tomorrow afternoon. - so a maybe

I also have an ongoing offer to arrange a meeting which I haven’t managed to take up yet.

ETA this is progress in the level of interest since previously not signing EDM, attending Unrest screening or February or June Westminster Hall debates
 
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I've just been re-reading the motion and thinking about it, and I think great care is needed with this bit:

"supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment".

It's important to make clear that this is a suspension of recommending GET/CBT as evidence based treatments, rather than a call for them to be banned. The NHS should not be spending money on homeopathy, or recommending it as an evidence based treatment, but at the same time individuals should be able to pursue and spend their own money on things without a legitimate evidence base.

I think it's important to be clear that this is about downgrading CBT/GET to the level of homeopathy rather than singling these treatments out with bans. I think that we can easily defend downgrading the recommendations of CBT/GET, and the debate about that measure plays to our strengths, but if this can be portrayed as an anti-patient choice measure then it would be far easier to make us seem unreasonable.
 
Esther12 said:
It's important to make clear that this is a suspension of recommending GET/CBT as evidence based treatments, rather than a call for them to be banned.
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I've assumed this is very carefully worded. The government could not call for the abolition of CBT/GET, because it is presumably down to what NICE recommends, and has to be left down to NICE. But given the NICE guideline is being overhauled, I imagine this motion is doing what it can much more legitimately do: calling for CBT/GET to be suspended, given that a key reason the NICE guideline is being updated is due to concerns about such treatments. I think a motion that called for the abolition of CBT/GET would be sure to get voted down because it would be outside the prerogative of government, and deemed interference, but calling for its suspension holds much more water, hopefully much better chance of being voted for.
 
Esther12 said:
I've just been re-reading the motion and thinking about it, and I think great care is needed with this bit:

"supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment".

It's important to make clear that this is a suspension of recommending GET/CBT as evidence based treatments, rather than a call for them to be banned. The NHS should not be spending money on homeopathy, or recommending it as an evidence based treatment, but at the same time individuals should be able to pursue and spend their own money on things without a legitimate evidence base.

I think it's important to be clear that this is about downgrading CBT/GET to the level of homeopathy rather than singling these treatments out with bans. I think that we can easily defend downgrading the recommendations of CBT/GET, and the debate about that measure plays to our strengths, but if this can be portrayed as an anti-patient choice measure then it would be far easier to make us seem unreasonable.
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I agree with @Barry but I do think - given the BPSers usual tactics - that this is a very important point. It's late, but can anyone get this point across to any of the key players before the debate. Who has CM's ear?
 
Ways to watch live;
https://parliamentlive.tv/Commons
https://www.bbc.co.uk/iplayer/live/bbcparliament (UK only)
(The BBC Parliament channel can also be seen on Freeview, Channel 232; Sky, Channel 504, and Virgin Media, Channel 605, as well as other media providers.)





Moderator note: This post will be copied to create a new thread and subsequent posts discussing the debate once it has started should be posted there.
 
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