Call to Action: Westminster Hall (UK) (parliamentary) debate: PACE trial and its effect on people with ME - Carol Monaghan February 20

Seven said:
So like would be appropriate to send all David's Tuller Articles?
Click to expand...
I believe she has been in contact with our leading charities and advocates and we can trust them to be giving her all the relevant papers and articles to read.
I think our efforts would be better focussed on providing her with as many personal accounts as we can and encouraging everyone we know in a similar boat to do the same.
 
I notice the debate is only 30 mins long (the same time allotted to discussing Rail services to and from Kettering !) so maybe someone could draw up a brief list of key points eg the latest reanalyses by Tom etc showing no recovery, also the COIs , seriously hindering biomedical research, causing harm to many patients forced to undergo treatment etc etc.
 
Jonathan Edwards said:
I have emailed Carol Monaghan to ask if she wants any professional input. I am not quite sure what the thrust of the debate will be but she seems to have focused on conflict of interest so far.
Click to expand...
In which case I'd assume people being refused benefits or sick pay or reasonable adaptations in the workplace due to the mistaken assertion that ME is a psychological condition would be the best ammunition to give her?

For example:
My daughter developed ME related OI while working at a high street bank. After diagnosis the ME clinic sent her employers suggestions for adaptations to her working environment, these implied that her condition was emotionally driven.
No adaptations were made, she was told the bank had no legal requirement to do so for psychological conditions. She was made redundant shortly afterwards.
 
Russell Fleming said:
We hadn't been asked to make a public announcement about the PACE Trial debate, but @Dolphin discovered it, so we've now also shared it across our social media.

P.S. For those that don't know, I work part-time for the ME Association.
Click to expand...

Thanks, @Russell Fleming. Welcome to the forum. It's great to have someone here from the MEA. If you're passing on stuff about PACE, there is also a new paper detailing the flaws in PACE that is excellent, see this thread:
https://www.s4me.info/threads/rethi...-major-trial-of-graded-exercise-and-cbt.2282/
 
Sly Saint said:
If the debate is on the impact of PACE maybe it would be good if non-uk people could put together a brief statement to show how it has not only detrimentally impacted pwME in the UK but all over the world.
Click to expand...
I've emailed her my story from the Netherlands - a neurologist insisting drugs could not help me, only exercise, then printing out the PACE recovery paper when I asked why he believed that. I also thanked her for her efforts, regardless of the outcome.
 
I noticed on Twitter someone replied and Carol asked did she have permission to mention it. So best to explicitly say what you are happy to be shared. I don't think full names will be mentioned but perhaps if you don't want your first name mentioned, say that. I don't follow such formats so don't know what is the convention with regard to identifying people.

Also best if posting elsewhere if also tell people to explicitly say what can and cannot be public mentioned by Carol or your own MP.
 
Valentijn said:
I've emailed her my story from the Netherlands - a neurologist insisting drugs could not help me, only exercise, then printing out the PACE recovery paper when I asked why he believed that. I also thanked her for her efforts, regardless of the outcome.
Click to expand...
Given the short time slot, i think the following should be targeted
Flaws in PACE and impact on biomedical research ( uk was once a world leader in this field)

Harm caused by recommended treatments with no risk of harm highlighted to patients. Helsinki aspect.

Psych slant for insurance and benefits denial - a direct quote frm some of the historic papers would hit home . COI again.

Impact worldwide

The fact that even though accepted elsewhere that GET/ CBT ( Cfs version) are not suitable treatments and have been dropped - these will remain in place here until new guidelines are in place even though efficacy is not proven and harm can be done. We continue to perpetuate an unacceptable situation.

For children this treatment can deny them opportunities and limit their potential.

There must be a personal connection. Debate in Scottish parliament was due to an MSP having a close family friend affected.
 
The recent debate re PIP, led by Laura Pidcock (Durham) was excellent. I watched most of it. There were a handful of personal stories mentioned by other MPs. The main points of the debate came from Laura and was peppered with info from others and Yes, quoted the no of responses she had got on Twitter/Facebook/ email etc.

A Tory MP replied to this quoting that their research on a sample of applicants had shown something quite different (ie most applicants were happy with the PIP process). He tried to imply that modern social media responses would not give reliable input. What he actually did was demonstrate how out of date he is.

Tesco did a U-turn, following the social media response re cutting the value of Rewards redeemed, without notice.

I'm not expecting PIP to be reformed overnight, but it is naive to try and ignore these inputs.

Please get tweeting/emailing etc and encourage friends and family to do the same.
 
Trish said:
Thanks, @Russell Fleming. Welcome to the forum. It's great to have someone here from the MEA. If you're passing on stuff about PACE, there is also a new paper detailing the flaws in PACE that is excellent, see this thread:
https://www.s4me.info/threads/rethinking-the-treatment-of-chronic-fatigue-syndrome—a-reanalysis-and-evaluation-of-findings-from-a-recent-major-trial-of-graded-exercise-and-cbt.2282/
Click to expand...

Thank you Trish. We're aware of the paper and its pending publication. Carolyn was in touch with Dr Shepherd about it quite recently.

Dr Shepherd met with Carol Monaghan MP in Parliament earlier this afternoon. Once he's back home we should know more about the debate.

It was interesting listening to a similar debate secured by Laura Pidcock MP who also asked on Twitter/Facebook for people to send her their experiences of the disability benefit Personal Independence Payment. She didn't get very long to try and impart the feedback she received - but the Minister responsible for the Department of Work and Pensions was there to give a reply. Anyway, I thought it might give an idea of what these short debates can be like.

Not sure how to embed media but here's the link to the PIP debate in Westminster Hall on 31st January:
http://www.parliamentlive.tv/Event/Index/e486f18f-03dd-4241-9dfd-b1a98eabef26
 
Last edited:
Sbag said:
Would it be worth sending her the Dr Myhill stuff as although it's a bit ranty it does point out the legal challenges to the trial - also individuals have written letters to the GMC about how PACE, GET and CBT have affected them - so those letters would be equally relevant here.
Click to expand...

I don't think Myhill is a great spokesperson for us. For something like this, it would be best to avoid things that risk going to far and could then be used against us.

The other thing that I would expect them to try to use against us is the idea that patients are just opposed to psychological interventions because of the stigma of mental health problems... if only we were more enlightened, then we would see that there's no shame in benefiting from CBT and GET!

This can be difficult to avoid, as in Liv's example classing a condition as a MH problem can have practical implications, and the misleading claims made about the value of CBT and GET have played a role in CFS being classed by some as a MH problem. I guess we just need to be as careful as possible with that one.

Liv aka Mrs Sowester said:
For example:
My daughter developed ME related OI while working at a high street bank. After diagnosis the ME clinic sent her employers suggestions for adaptations to her working environment, these implied that her condition was emotionally driven.
No adaptations were made, she was told the bank had no legal requirement to do so for psychological conditions. She was made redundant shortly afterwards.
Click to expand...
 
Russell Fleming said:
Not sure how to embed media but here's the link to the PIP debate in Westminster Hall on 31st January:
Click to expand...
Most media embeds automatically i.e. URLs will be automatically converted to links, Facebook and Twitter will embed automatically, as will YouTube (though it will strip out any time marker, so you can't embed a YouTube video to start at a particular time). That covers most options.
 
Esther12 said:
I don't think Myhill is a great spokesperson for us. For something like this, it would be best to avoid things that risk going to far and could then be used against us.

The other thing that I would expect them to try to use against us is the idea that patients are just opposed to psychological interventions because of the stigma of mental health problems... if only we were more enlightened, then we would see that there's no shame in benefiting from CBT and GET!

This can be difficult to avoid, as in Liv's example classing a condition as a MH problem can have practical implications, and the misleading claims made about the value of CBT and GET have played a role in CFS being classed by some as a MH problem. I guess we just need to be as careful as possible with that one.
Click to expand...

I think though that the letters to GMC are valid. Some of the experiences with children are the stuff of kafkaesque novels playing out here in C21st.

Whatever your thoughts on Dr Myhill she has been right about GET from the start ( has protested against it) and, perhaps more pertinently, has never lost a case that has been brought against her. I think she' s playing a long game.
Her passion is evident, though this makes her an easy target .
 
Esther12 said:
The other thing that I would expect them to try to use against us is the idea that patients are just opposed to psychological interventions because of the stigma of mental health problems... if only we were more enlightened, then we would see that there's no shame in benefiting from CBT and GET!
Click to expand...
The really strong points to bring out re psychological diagnosis are:
  • It has nothing to do with stigma.
  • Is a misdiagnosis, with all the attendant issues that misdiagnosis of any condition brings.
 
Barry said:
The really strong points to bring out re psychological diagnosis are:
  • It has nothing to do with stigma.
  • Is a misdiagnosis, with all the attendant issues that misdiagnosis of any condition brings.
Click to expand...

I think that there's some value in trying to simplify things by arguing that whether or not CFS should be classed as a mental health issue, PACE is still junk. I guess with the political stuff there can be a direct significance in whether CFS is classed as a mental health issue though (in terms of the DWP, insurance companies, etc). It is frustrating how often that gets turned around to presenting patients as being unreasonably opposed to be classed as suffering from a mental health condition, and then an irrelevant discussion of biological abnormalities in CFS, depression, schizophrenia, etc.
 
You must log in or register to reply here.
Back
Top Bottom