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

Barry said:
So SW was involved in PACE, at least regards writing the manuals, albeit he forgot that
Click to expand...

To my knowledge, SW:

  • advised on 'design and execution' (according to the 2007 Protocol);
  • was a treatment centre leader or co-leader (according to the 2007 Protocol and 2011 main outcomes paper, but has stated on social media that he is fairly sure he was not a centre leader and if this had been correct, he ought to have been named a co-author);
  • the TMG consisted of all centre leaders and co-leaders (according to the 2007 Protocol)*;
  • TMG members participated in the design of the study (2007 Protocol)*;
  • was apparently named as collaborator on the MRC application but the link to the MRC's FOIA response on S4ME appears to be defunct.
According to the protocol, SW wasn't a treatment leader, so he didn't co-lead treatment manual design. Treatment leaders were Jessica Bavinton, Mary Burgess, Diane Cox, Gabrielle Murphy, Lucy Clark and Helen Chubb.*

Not sure if I'm missing anything.

*Edited for accuracy.
 
Last edited:
I have a result from Ipswich MP Sandy Martin,

I am happy to confirm that Sandy will try to attend the debate if he gets back to Westminster on time (he has a shadow ministerial visit scheduled). You might be pleased to hear he attended and intervened during the Fibromyalgia debate in Westminster hall on 15th January 2019 and pointed out that GPs still need more training.

Please follow this link if you'd like to watch his intervention.
Kind regards

Milan Skopal

Office of Sandy Martin

Member of Parliament for Ipswich
House of Commons, London SW1A 0AA
Parliament: 020 7219 1208
Ipswich: 01473 487648
 
Last edited:
MeSci said:
I've sent the following to my MP via https://act.meaction.net/page/7340/action/1

"As previously stated to you, my life has been wrecked by ME since 1995. Luckily I have not been subjected to the appallingly-dangerous and ill-advised Graded Exercise Therapy, or Cognitive Behaviour Therapy, but I experienced a very-worrying worsening in March 2016, six months before I was due to get my pension, and as a result of which I was unable to claim my last 6 months of benefit.

I am sure that many people with ME (pwME) have much worse outcomes than myself, and I know that a significant number die - some deliberately due to the appalling way they are treated, and some probably because they simply cannot access services.

I hope that you have found time to watch the Oscar-shortlisted documentary Unrest (now available on Netflix: https://www.netflix.com/title/80168300)

I also hope that the short notice given will not prevent you from attending this important debate. An estimated 250,000 people in the UK are sufferers - approximately 400 patients per constitiency.

Yours in anticipation,

..."

Added at 1556:

Title of email "Upcoming House of Commons Main Chamber Debate on Myalgic Encephalomyelitis"
Click to expand...
I've sent the further info:

"but due to the mental haze inflicted by ME forgot to say which day the debate was. It's on 24th January. I'm not yet sure of the time."

and also added a link to the document here: https://www.meassociation.org.uk/wp...ing-on-M.E.-for-Backbench-Debate-18.01.19.pdf
 
Mine's done, to Peter Bone in the Wellingborough constituency.

I used https://www.writetothem.com/ as follows, feel free to borrow if it helps.


Dear Peter Bone MP FCA,
Thankyou for your previous correspondance and representations about concerns with PIP assessment (19Jul & 17Aug 2017). Today I am writing to ask for your help with the grass roots campaign to promote recognition and appropriate treatment of my medical condition M.E. (Myalgic Encephalomyelitis), diagnosed as ME-CFIDS (~ Chronic Fatigue Immune Dysfunction Syndrome) by Dr Sarah Myhill.

ME patients make bad campaigners because we lack energy and need a quiet life but this has gone on long enough and each generation brings a new crop of ME cases and the medics have no answers, which has to change. Each of us does the little we can and this is my little bit, for the time being.

ME has a major economic impact on the nation and ruins the lives of hundreds of thousands of people like myself, many living around Wellingborough.

In this context I am writing to let you know that the Backbench Business Committee have confirmed a Commons debate on M.E. for sometime after 2pm next Thursday, 24th Jan 2019. I urge you to attend if circumstances permit and vote for the motion which is as follows.

“That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of ME and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting ME families to unjustified child protection procedures.”

I hope you can find time to look at a parliamentary briefing, prepared by patient funded professionals, link below.
The aim of ME patients' groups is simply to get this illness recognised, researched and treated properly, for everyone's sake. Accurate scientific knowledge is the best way to prevent further injustices like inappropriate child protection proceedings and counterproductive therapy recommendations arising from discredited mistaken research. I hope you agree it makes sense to seek scientific truth and end the misrule of ignorance.

Below is the URL for a parliamentary briefing from a patient funded campaign group #MEAction.
https://www.meaction.net/wp-content/uploads/2019/01/MEAction_UK_Parliament_Briefing_Full_Jan19.pdf
Thankyou for reading.
Yours faithfully, etc
Click to expand...
 
Two have been sent from our household, from me and the wife. We used the MEAction tool, the advice I'd give with that is to have a think about what you personally want to say before you start using it as, if like me, you take too long writing then it 'time's out' and you have to restart the whole thing.
 
Andy said:
Two have been sent from our household, from me and the wife. We used the MEAction tool, the advice I'd give with that is to have a think about what you personally want to say before you start using it as, if like me, you take too long writing then it 'time's out' and you have to restart the whole thing.
Click to expand...

It would be good if the fact it might time out was made clear to people at the start... I'm still in the pain over stupidly losing a post I was drafting yesterday.
 
I have emailed the MEAction toolkit to all my family and friends asking them to spend 2 minutes to complete the form to ask their MP to attend the debate.

I find that people are much more likely to respond to these sort of requests by email than on social media, where it’s eaiser to miss or ignore.

In less than 24 hours, about 20 people have now told me that they have emailed their MP for me. Definitely worth the effort.

In case it is of any use, here is a template based on the email I sent. I’d suggest adding something personal too, particularly if you’ve been involved in the process in any way:
Dear Friends,

With cross-party support, Carol Monaghan MP has secured a debate on ME in the House of Commons on Thursday 24 January. #MEAction has produced a very simple toolkit to enable you to email your MP to ask them to attend the debate: https://act.meaction.net/page/7340/action/1

If you could spare just 2 minutes to complete the form, which will generate a customisable email to send to your MP, I would be hugely appreciative. It is hard to overstate the importance of this debate to me.

The substantive motion for the debate is as follows:

“That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of M.E., supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of M.E. and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting M.E. families to unjustified child protection procedures.”

A copy of the #MEAction briefing paper for MPs is available here:
https://www.meaction.net/wp-content/uploads/2019/01/MEAction_UK_Parliament_Briefing_Full_Jan19.pdf

Many thanks,
Click to expand...

Tagging @EspeMor in case this is an idea she would like to promote through MEAction.
 
Last edited:
I'm wondering if all the charities who were involved in the "Parliamentary briefing document" are fully behind the motion being proposed by CM on the 24th? Anything done quickly and by committee isn't to be perfect but it doesn't seem to be very well laid out and joined together.

CM is proposing this

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

BUT the Briefing document contains 2 sections that could / should have covered this. It does under "NICE Guideline" on page 6

"NICE to take patient concerns about treatments into account by immediately issuing a public statement about the harm that can be caused by the current guidelines for the period they remain active (i.e., until new guidelines are published October 2020) and ultimately, by removing Graded Exercise Therapy and CBT based on the biopsychosocial model in the new guidelines"

CM is asking for GET and CBT to be "suspended as treatments" but the Briefing Document doesn't do the same. Asking for the NICE Guideline to issue a public statement and eventually remove from the new guideline isn't the same.

The briefing paper seems to allow CBT to be offered to patients as a "treatment" as long as it is not the "biopsychosocial" model leaving the door open.

This is probably just nitpicking but I wish that they had made it clearer.

CBT if offered in any other form isn't a "treatment" (not that it ever really was of course) and I would question if CBT in any form should be included in a NICE Guideline. As far as I am aware CBT is claimed to be used for cancer etc but is it included in cancer NICE Guidelines?

The other section of the Briefing paper that could have made where they stand on CBT and GET clear was under the section "NHS Services" but this section doesn't it say that patients are currently being referred to CFS Clinics that only offer CBT and GET (a la NICE)

"There is a challenge in treating this disease, with its broad spectrum of patients, but many patients find that the treatments on offer through the NHS do not help, or are detrimental to their condition."

But that doesn't say that the "detrimental" treatments are NICE sanctioned and in all (? or most of?) the NHS CFS clinics. It also doesn't make it clear that these are sometimes the only treatments offered in NHS clinics

and most worryingly there is this paragraph

"Services offer a variety of different treatments, highlighting that patients are often subject to a postcode lottery due to the absence of a consistent referral pathway and treatments [Action for ME 2017c]. This means that a patient in one locality will be offered one treatment, while somewhere else they would receive another, without due consideration given to their particular circumstance or preference. This lack of consistency stems from a failure to recognise appropriate treatments for people with ME."

This is hard for me to understand. They seem to be arguing that there are treatments.. somewhere.. but patients are not all being referred to them and there is a postcode lottery.

As far as I am aware there is no NHS CFS clinic left that is not run by a PACE sympathiser or using PACE methods. The last clinicians who opposed these methods are dead or retired. (I know that a new service is being set up by one local group though but if they were referring to this they would have said)

Where is this mythical clinic offering "appropriate treatment for people with ME". I'd travel there to see someone myself.

It should have been made clear in the "NHS services" section that it was the current set of CFS clinics that were offering CBT and GET and harming patients and that in the UK there was no provision at all for "treatment" other than at these clinics.

They did point out MUS dangers though which I am grateful for.
 
Last edited:
Link to Sandy saying it as it is!
https://parliamentlive.tv/event/index/4f090137-2b52-4604-9fff-c6e4c2a19336?in=10:54:36
ukxmrv said:
As far as I am aware there is no NHS CFS clinic left that is not run by a PACE sympathiser or using PACE methods. The last clinicians who opposed these methods are dead or retired. (I know that a new service is being set up by one local group though but if they were referring to this they would have said)
Click to expand...

The Norfolk and Suffolk Service does not offer GET or CBT.
 
' The Norfolk and Suffolk Service does not offer GET or CBT '

Thank you. It was your great new service I was thinking of. Congratulations.

I am assuming that was not what the Charities who wrote the Briefing Document were referring to as you won't be geared up to every ME patient being referred there.
 
Russell Fleming said:
The revised/updated briefing will be available tomorrow with a cover letter for people to invite their MPs to the debate.
Click to expand...

ukxmrv said:
I'm wondering if all the charities who were involved in the "Parliamentary briefing document" are fully behind the motion being proposed by CM on the 24th? Anything done quickly and by committee isn't to be perfect but it doesn't seem to be very well laid out and joined together.
Click to expand...

Robert 1973 said:
I also understand that a new briefing document for MPs is being prepared which deals specifically with the issues raised in the Motion.
Click to expand...

The Parliamentary Briefing being put out by AfME and the MEA is the same unrevised one as for the debate in June.

https://www.meassociation.org.uk/wp...ing-on-M.E.-for-Backbench-Debate-18.01.19.pdf

Why aren't they using the new one done by #MEAction which relates directly to the motion of the debate on thursday?

(ie https://www.meaction.net/wp-content/uploads/2019/01/MEAction_UK_Parliament_Briefing_Full_Jan19.pdf)
 
Sly Saint said:
The Parliamentary Briefing being put out by AfME and the MEA is the same unrevised one as for the debate in June.

https://www.meassociation.org.uk/wp...ing-on-M.E.-for-Backbench-Debate-18.01.19.pdf

Why aren't they using the new one done by #MEAction which relates directly to the motion of the debate on thursday?

(ie https://www.meaction.net/wp-content/uploads/2019/01/MEAction_UK_Parliament_Briefing_Full_Jan19.pdf)
Click to expand...

Good Afternoon,

This is incorrect information.

We actually had an email from Jane Colby (Tymes Trust) who had erroneously been informed we (the ME Association) had attached the earlier briefing to our blog and social media promotions where we're asking people to invite their MPs.

Without waiting for a reply, Jane also took to Twitter to declaim our error. But it was based on a false rumour.

The updated briefing was available to us on Thursday, but then it was noticed that certain logos from supporting charities had been omitted.

So, we waited to receive the revised briefing from #MEAction (which included the logo's from Tymes and 25% Group) and published our blog with the CORRECT briefing document on Friday morning.

I have said as much to Jane in response to her email which she has accepted, and I also responded in similar fashion on Twitter.

Here is the blog I published Friday morning with the correct briefing and all the supporting charities/groups logo's shown on page 2: https://www.meassociation.org.uk/2019/01/invite-your-mp-parliamentary-debate/

The content of the briefing has been updated since it was first published for the Westminster Hall debate in June 2018 by the charities whose logos are shown on the front cover i.e. #MEAction, ME Association, ME Trust and Action for M.E. who are also the original authors.

All the best

Russell
 
Last edited:
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)
p. 1: 95% of people with ME do not recover
Click to expand...

Is there a reference for this figure?

p.2-3:
The following changes have been measured in people with ME during exercise.

Reduced blood flow to the brain and heart (*9)

Reduced oxygen uptake in red blood cells (*10)

Reduced oxygen utilisation (*11)
Click to expand...

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.
 
Last edited:
Russell Fleming said:
Good Afternoon,

This is incorrect information.

We actually had an email from Jane Colby (Tymes Trust) who had erroneously been informed we (the ME Association) had attached the earlier briefing to our blog and social media promotions where we're asking people to invite their MPs.

Without waiting for a reply, Jane also took to Twitter to declaim our error. But it was based on a false rumour.

The updated briefing was available to us on Thursday, but then it was noticed that certain logos from supporting charities had been omitted.

So, we waited to receive the revised briefing from #MEAction (which included the logo's from Tymes and 25% Group) and published our blog with the CORRECT briefing document on Friday morning.

I have said as much to Jane in response to her email which she has accepted, and I also responded in similar fashion on Twitter.

Here is the blog I published Friday morning with the correct briefing and all the supporting charities/groups logo's shown on page 2: https://www.meassociation.org.uk/2019/01/invite-your-mp-parliamentary-debate/

The content of the briefing has been updated since it was first published for the Westminster Hall debate in June 2018 by the charities whose logos are shown on the front cover i.e. #MEAction, ME Association, ME Trust and Action for M.E. who are also the original authors.

All the best

Russell
Click to expand...
I didn't know anything about Jane Colbys tweet, I just went to the link on the MEAs website which still appears to link to the 'old' briefing
"
The full debate will take place in the House of Commons next week, on Thursday, 24th January at 2.00pm.

We don’t know how long the debate will take, but we expect it will be televised on Parliament TV which usually allows for debates to be downloaded.

Please invite your MP to attend the debate

We’ve included a template email/letter below that you can amend to suit your circumstances or to raise any particular issue, and a link that will enable you to locate your MPs contact information.

  • Try and keep your email or letter brief and to the point.
You can also attach or include the Parliamentary Briefing that has been prepared by the ME Association, #MEAction, Action for M.E. and the ME Trust and is supported by other M.E. charities."


as it does on AfME website

"
Parliamentary briefing
#MEAction, Action for M.E., ME Association and the ME Trust have produced a detailed parliamentary briefing for MPs, supported by Blue Ribbon for Awareness of ME, Centre for Welfare Reform, Forward ME, ME Research UK, Welsh Association of M.E. and CFS and Hope4ME & Fibro.

Originally produced for the June's Westminster Hall debate, the briefing remains relevant, highlighting key issues including education of health professionals, the ongoing review of the NICE guideline on M.E./CFS, children and young people with M.E. and the PACE trial."

?

I'm not on FB or twitter so haven't looked there.
 
Russell Fleming said:
The content of the briefing has been updated since it was first published for the Westminster Hall debate in June 2018 by the charities whose logos are shown on the front cover i.e. #MEAction, ME Association, ME Trust and Action for M.E. who are also the original authors. [Bolding added]
Click to expand...

Sly Saint said:
I didn't know anything about Jane Colbys tweet, I just went to the link on the MEAs website which still appears to link to the 'old' briefing
Click to expand...

This is indeed confusing. On the top of page 2 it reads:

BRIEFING FOR MYALGIC ENCEPHALOMYELITIS:
'TREATMENT AND RESEARCH' WESTMINSTER HALL, 21 JUNE 2018.
(This briefing has been reproduced without amendment for the Back Bench Business debate on 24 Jan 2019) [Bolding added][
Click to expand...

And #MEAction only link to their 6-pager.

@Russell Fleming
@EspeMor
 
Last edited:
I was just wondering what happens next , if a fair amount of MPs attend and they vote to support the motion, what are the hopes or plans for the next stage to actually get what MPs hopefully agree we should have ...
 
@dave30th's post on the debate:

Trial By Error: Carol Monaghan Scores Another Parliamentary Debate
This will be the third parliamentary debate she has organized in the last year. The difference this time around is that the debate will be held in the House of Commons itself, not in Westminster Hall like the first two. House of Commons debates are a much bigger deal. They tend to receive more press attention and have a greater potential impact on policy developments going forward. They also allow for a vote on a motion put forward by the organizers. (Of course, given Brexit insanity, it’s unclear how much coverage anything else will get, just as Trump insanity overwhelms every other issue in U.S. news coverage.)
Click to expand...

Edit: dedicated thread there.
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom