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

[Barry]

I take your point @Esther12, although I didn't think there was still debate about whether ME is physiological amongst those who've actually looked at the evidence objectively.

I guess I'm just not sure how well MPs will do with the technical/math arguments - I suspect they might switch off. From that point of view, and given that MPs likely know little about ME, giving them some of the bigger picture as it relates to PACE could help. I assume that's what the ME Assoc. were aiming to do.

Not sure what the right content is, but the best approach I think is to assume most of the MPs are completely ignorant of the issues, and unlikely to comprehend within 30 mins anything but the most clear-cut hard hitting single-issue argument. Which is why I think the COI focus would be good, as most MPs can identify with the notion, and in 30 mins enough facts could be got across to raise enough interest for people to want to know more. If they can come out of the session a) Remembering the name of the PACE trial; b) Remembering it related to ME/CFS; c) Remembering it has some major COI issues (and therefore other issues; d) Believing it needs investigating further ... then that would be extremely good. Anything that detracts from that would be a bad idea; lets not try telling the whole story in the introduction.

 

[Amw66]

I think there is another whole area around PACE that needs addressing which is its use to justify a MUS approach. I think there was a slide set recently being discussed by Kings and others which referred to a 22% recovery with CBT which they didn't reference back to PACE but its the likely source of the figures.

It looks like certain hospital trusts are using the results they helped spin to try to get additional work.

The MUS agenda is worrying. It' s a rebadging and extension of the gameplan used for PACE to many conditions. Effectively it' s a recategorisation by the back door of many chronic illnesses. It' s been thought out well in advance and introduced in increments.

 

[Amw66]

Not sure what the right content is, but the best approach I think is to assume most of the MPs are completely ignorant of the issues, and unlikely to comprehend within 30 mins anything but the most clear-cut hard hitting single-issue argument. Which is why I think the COI focus would be good, as most MPs can identify with the notion, and in 30 mins enough facts could be got across to raise enough interest for people to want to know more. If they can come out of the session a) Remembering the name of the PACE trial; b) Remembering it related to ME/CFS; c) Remembering it has some major COI issues (and therefore other issues; d) Believing it needs investigating further ... then that would be extremely good. Anything that detracts from that would be a bad idea; lets not try telling the whole story in the introduction.

And it has caused harm to people who were not informed of risks

 

[Indigophoton]

Not sure what the right content is, but the best approach
I think is to assume most of the MPs are completely ignorant of the issues, and unlikely to comprehend within 30 mins anything but the most clear-cut hard hitting single-issue argument.

Yes, I think you're right. Hopefully, being an MP herself, Carol Monaghan will know how to play the game

 

[Cheshire]

Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial

Now Carol Monaghan, the SNP MP for Glasgow North West, has secured a Westminster Hall debate on the PACE trial on February 20.
She is being assisted by the ME Association’s honorary medical adviser, Dr Charles Shepherd.

He said: “Inappropriate aerobic exercise exacerbates symptoms for ME patients and can make their condition worse. The data used in the PACE trial is flawed and we are grateful to Ms Monaghan to securing this important debate.

http://www.heraldscotland.com/news/...ination_of_controversial_ME_trial/?ref=twtrec

 

[PeeWee]

Does anyone know why PACE, which has had such terrible repercussions for huge numbers of people in the UK & across the world, only gets 1/2 hour, while Recruitment and retention of NHS staff in Oxfordshire gets three times as long? Is it the luck of the draw?

9.30am Westminster Hall debate
The future of basketball in the UK - Alex Sobel

11am - 11.30am Westminster Hall debate
PACE trial and its effect on people with ME - Carol Monaghan

11.30am - 1pm Westminster Hall debate
Recruitment and retention of NHS staff in Oxfordshire - Layla Moran

1pm - 1.30pm Westminster Hall debate
Rail services to and from Kettering - Mr Philip Hollobone

1.30pm - 2.30pm Westminster Hall debate
Social housing and regeneration in Earls Court and West Kensington - Andy Slaughter

 

[Inara]

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.

I will try to formulate something. Thanks for making me aware!

 

[Wonko]

No, I would have said it was probably because the NHS is plastered all over the news channels ATM, even, especially, politicians like appear to "care" to the news but that can't be the case coz basketball isn't and that's got 90 minutes as well.

 

[Barry]

Does anyone know why PACE, which has had such terrible repercussions for huge numbers of people in the UK & across the world, only gets 1/2 hour, while Recruitment and retention of NHS staff in Oxfordshire gets three times as long? Is it the luck of the draw?

Definitely not luck of the draw. It basically shows how important this debate is, to hopefully raise awareness, interest and understanding.

 

[Amw66]

Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial

http://www.heraldscotland.com/news/...ination_of_controversial_ME_trial/?ref=twtrec

you can sign in and leave comments

 

[MEMarge]

I think some in the Lords had more of an interest in that they are part of that medical community. I think Lord Winston was one. But not sure about MPs apart from the doctor who heads the health select committee who may be supportive of the BPS approaches.

There is the GP Sarah Wollaston (Cons). Obviously, not currently working as a GP due to being an MP. From memory (not always reliable, especially past 10pm) her constituency is in the SW, possibly even Cornwall.
This is relevant because of Camelford. A town where pollutants from a factory ?aluminium salts, entered the local river (?Camel) and from there, the local river , and then the water supply became contaminated.
Many people were seriously affected. Simon Wesseley's view was that it was a psychological problem.
Why anyone asked for his view at all I don't know. Has he ever retracted that, or done his "Nothing to see here, move along please routine"

Has he ever been questioned by Doctors, Scientists, MPs, water engineers, anyone with basic scientific understanding or even common sense.
Is he someone who is unable to accept it, when he does get things wrong....

 

[Amw66]

There is the GP Sarah Wollaston (Cons). Obviously, not currently working as a GP due to being an MP. From memory (not always reliable, especially past 10pm) her constituency is in the SW, possibly even Cornwall.
This is relevant because of Camelford. A town where pollutants from a factory ?aluminium salts, entered the local river (?Camel) and from there, the local river , and then the water supply became contaminated.
Many people were seriously affected. Simon Wesseley's view was that it was a psychological problem.
Why anyone asked for his view at all I don't know. Has he ever retracted that, or done his "Nothing to see here, move along please routine"

Has he ever been questioned by Doctors, Scientists, MPs, water engineers, anyone with basic scientific understanding or even common sense.
Is he someone who is unable to accept it, when he does get things wrong....

Official statements on Camelford seem particularly ill informed. Seemingly residents were told to boil water before use - concentrating the solution ....

 

[Liv aka Mrs Sowester]

This is relevant because of Camelford. A town where pollutants from a factory ?aluminium salts, entered the local river (?Camel) and from there, the local river , and then the water supply became contaminated.

A water treatment tank had a vast amount of aluminium tipped into it by the driver delivering the aluminium. There was no one around to tell him where to put the delivery so he used his own initiative! A much smaller amount of aluminium is used in the treatment of all drinking water. There was no poisoning of local rivers to my knowledge.

I moved to Camelford a year or two after the water incident. Mr S lived here at the time.
People were vomiting, some people's hair went green and many people faked reactions in the hope of getting compensation.
There have been, I think, 2 people who've had early onset Alzheimer's and found to have high levels of aluminium in their brains at post-mortem. But post mortems are usually only conducted where there is a question over the cause of death.
We have a higher rate of Autism than most areas in the region.
But we also have high poverty, deprivation, and unemployment, high levels of drug and alcohol abuse.

There has been no monitoring of the population to see if there are any trends short or long term. For this reason it is impossible to say whether the incident did do any damage to health. It would be interesting to ask local GPs if they notice anything.

So when the Camelford water poisoning incident is used as an example to kick Wessley I always think it's not the best example. He was wrong in his diagnosis of mass hysteria, but not just for the reasons we think! He will probably have been presented with some genuine cases, some fakers and some who were just anxious.

 

[Barry]

Simon Wesseley's view was that it was a psychological problem. Why anyone asked for his view at all I don't know.

I doubt waiting to be asked has ever been an obstacle for him.

 

[MeSci]

Thought I should add that, while not keen on some of the MEA briefing, I'm sure that they did a massively better job than Action for ME would have.

I don't think this has been posted yet:

https://www.actionforme.org.uk/news/pace-trial-to-be-debated-at-westminster/

PACE trial to be debated at Westminster
---------------------------------------

A Westminster Hall debate about the PACE trial, and its impact on people with M.E., will be held on Tuesday 20 February. Leading the debate, Carol Monaghan, SNP MP for Glasgow North West, has raised concerns around about the methodology and conduct of the trial, and its clinical value - something highlighted by a new reanalysis and evaluation of PACE, which raises 'serious concerns about the robustness of the claims made about the efficacy of CBT and GET.'

More at link

 

[Sly Saint]

In light of what has or hasn't happened re accessing the PACE data:
https://www.s4me.info/threads/pace-trial-data.2337/
and given that we know that some of it has also been lost anyway

"While QMUL remains the holder and owner of the raw data from this clinical trial, it has effectively lost the means to locate and extract it because this requires specialist knowledge. There is no longer anyone at QMUL with the ability to produce data from this trial"

I think the main thing now is to DEMAND a completely independent review of the protocols and reanalysis of the data.

Only then will the powers that be acknowledge that there is a problem.

 

[Esther12]

I don't think this has been posted yet:

https://www.actionforme.org.uk/news/pace-trial-to-be-debated-at-westminster/

PACE trial to be debated at Westminster
---------------------------------------

A Westminster Hall debate about the PACE trial, and its impact on people with M.E., will be held on Tuesday 20 February. Leading the debate, Carol Monaghan, SNP MP for Glasgow North West, has raised concerns around about the methodology and conduct of the trial, and its clinical value - something highlighted by a new reanalysis and evaluation of PACE, which raises 'serious concerns about the robustness of the claims made about the efficacy of CBT and GET.'

More at link

Thanks for reminding me how dire Action for ME are. A 'he-said she-said' report, at this point? Maybe, two decades after they were paid for 'consulting' on PACE, it's time for someone at Action for ME to take the time to understand the problems with it, rather than just timidly report that other people say there are problems?

I was actually already thinking I should have also posted some thanks/gratitude for Shepherd/Weir rushing off to talk to Monaghan. There were things about their report I found worrying (although it wasn't clear exactly what was said, so I may have been worrying about nothing), but I can unfairly take for granted their willingness to spend their time trying to help with things like this.

 

[MEMarge]

A water treatment tank had a vast amount of aluminium tipped into it by the driver delivering the aluminium. There was no one around to tell him where to put the delivery so he used his own initiative! A much smaller amount of aluminium is used in the treatment of all drinking water. There was no poisoning of local rivers to my knowledge.

I moved to Camelford a year or two after the water incident. Mr S lived here at the time.
People were vomiting, some people's hair went green and many people faked reactions in the hope of getting compensation.
There have been, I think, 2 people who've had early onset Alzheimer's and found to have high levels of aluminium in their brains at post-mortem. But post mortems are usually only conducted where there is a question over the cause of death.
We have a higher rate of Autism than most areas in the region.
But we also have high poverty, deprivation, and unemployment, high levels of drug and alcohol abuse.

There has been no monitoring of the population to see if there are any trends short or long term. For this reason it is impossible to say whether the incident did do any damage to health. It would be interesting to ask local GPs if they notice anything.

So when the Camelford water poisoning incident is used as an example to kick Wessley I always think it's not the best example. He was wrong in his diagnosis of mass hysteria, but not just for the reasons we think! He will probably have been presented with some genuine cases, some fakers and some who were just anxious.

Thanks for this extra info re Camelford, always good to get the 'inside story'.
As you can tell from the post my recollection was somewhat hazy and also disjointed. I really should stop posting that late!
I mentioned it only because it has been raised before re Wessely. Can't remember who or where.

There is certainly ample evidence of his misinterpretations?, so good to know this one is not worth remembering. Even though I could not remember much...

 

[Liv aka Mrs Sowester]

I think it's quite a good example of how unreliable the reporting of facts and opinions can be @MEMarge and how that impacts what we remember 20years down the line.
They say when there is an argument you get two polarised points of view and the truth lies somewhere in the middle; in the case of the Camelford water poisoning incident there were many sides, most of which were lying and the truth will probably never be known because no one is recording outcomes.

But Wessley was definitely wrong when he said residents were suffering from mass hysteria because some threw up after drinking the water and some were faking. It's just not as clear cut as 'the village got poisoned and suffered long term ill health' as is portrayed.

 

[MeSci]

I think it's quite a good example of how unreliable the reporting of facts and opinions can be @MEMarge and how that impacts what we remember 20years down the line.
They say when there is an argument you get two polarised points of view and the truth lies somewhere in the middle; in the case of the Camelford water poisoning incident there were many sides, most of which were lying and the truth will probably never be known because no one is recording outcomes.

But Wessley was definitely wrong when he said residents were suffering from mass hysteria because some threw up after drinking the water and some were faking. It's just not as clear cut as 'the village got poisoned and suffered long term ill health' as is portrayed.

I had the paper written by Wessely (and others?) on disc, but I can't find it now.