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

Here's my email:

Dear MP Carol Monaghan

I was thrilled to hear that thanks to you, the PACE-trial will be debated soon at the Parliament.

I would like to tell you a little about the consequences of the PACE-trial for ME-patients internationally. In my case Norway.

I got ME as a teenager over 20 years ago. At that time, neither I nor my doctors had ever heard of the disease. There were no followup or help to receive, but thanks to the Norwegian ME Association I got basic knowledge about ME and learned for instance about pacing.

ME has actually been on the political agenda for quite some time in Norway. Politicians from several political parties have shown a willingness to help this patient group. But the politicians must of course listen to the expertise. And most of the few doctors/researchers working with ME in Norway, have been strongly influenced by the PACE-trial and its researchers.

In my country we look up to and have great trust in British research institutions. So when a big, peer reviewed study published in the Lancet points towards graded exercise and cognitive behavioural therapy as effective treatments for ME, no one thought of questioning that. So these are the treatments offered.

It hasn’t helped to alert the health authorities that the PACE-treatments doesn’t work and even makes the patients worse. The Lancet is more trusted than patient feedbacks.

The Norwegian ME Association did a survey a few years ago among more than a thousand ME-patients in the country. Half of them said they had no contact at all longer with any health care service. Why would they?

For me, it is heartbreaking to know that during all the years I have been ill with ME, things haven’t moved forward. Much thanks to PACE and its researchers it is actually quite the opposite. Teenagers who get ill with ME today will receive worse care than I did. It was better to receive no help or advice at all, than being pushed into more activity and being told by doctors that what you tell is happening in your body, isn’t actually real.

The PACE-trial’s implications has consequences also beyond ME-patients. How could a trial with so many serious flaws be published in the Lancet? Why has it been almost impossible to get through with the criticism? Why did it take several years of persistent fight from the patients to get (at least some) of the data from the trial released? Why were there numerous attempts of cover ups instead of proper investigation into the trial and its criticism?

The overall consequence is less trust in British scientific research and institutions as the PACE-researcher's universities and journals as the Lancet. That is a loss for all of us.

The best way to regain trust is by showing a willingness to tidy up this mess and get to the bottom of what really happened here.

Thank you for taking on that job! It is the only way forward.

Best wishes and good luck on February 20th!

 

As @Cheshire said it's complicated in France as few people know about the PACE trial, and the "CFS specialists" here still support the BPS model, so openly calling patients to action against it could create more conflict and end all dialogue

 

New Facebookpost from Carol Monaghan


ETA Bah, seems I can't add the FB-post itself here, but says:

One week to go until the debate on the PACE Trial and its impact on people with ME, which will take place next Tuesday (20th February) at 11am.

Watch when I demanded that these conflicts of interest be exposed

Read more about the upcoming debate: http://www.carol.monaghan.scot/2018/02/07/pace-trial/

Ask your MP (if you live outside Glasgow North West) to attend – you can find out who they are via https://www.theyworkforyou.com

Get in touch with me if you have been affected: carol.monaghan.mp@parliament.uk

 

@ScottTriGuy and @Kalliope brilliant letters from both of you!

 

Hang on - the smily (ugh) man speaking represents the HRA AND Sense about Science, and Carol Monaghan mentions a double role for someone authoring the PACE Trial AND being an advisor to the DWP!

 

ETA: Nevermind, I couldn't get it to show the whole post either, weird.

 

Clicking on the F down to the right on the video, will take people straight to the post.

I saw that the previous Facebook-post from Carol Monaghan about the PACE-debate got a lot of likes, comments and support. Hope she continues to receive lots of feedback so she and other politicians really get the message that this is so important for so many of us.

 

By the way, this is the UK Sense about Science (presumably) which, despite this statement on the US Sense about Science website at http://senseaboutscienceusa.org/response-recent-intercept-article/

"Though we work with the UK Sense about Science, we are independent organizations, with separate funding, boards of advisors, missions, and strategies; we are not an affiliate of the UK Sense about Science. The aim of both Sense About Science USA and the UK Sense about Science are similar, however, execution of our projects varies to be appropriate to the mission, audience and needs of each organization (which are separate)."

by this linked article for example at http://uk.mediavor.com/time-for-unrest-why-patients-with-me-are-demanding-justice/ clearly has a different agenda on ME.

 

https://twitter.com/user/status/963459346821730306

 

Can anybody post again the link where the debate can be viewed? I thought I had it opened.

 

I left a comment on Carol Monaghan's FB page.

 

I assume here? Hopefully on the main page.
http://www.parliamentlive.tv/Commons

 

or on the bbc parliament channel:
https://www.bbc.co.uk/tv/bbcparliament

 

the bbc radio scotland programme tomorrow (14th Feb) should be here:
http://www.bbc.co.uk/programmes/b09rjrd6

eta: see thread here https://www.s4me.info/threads/bbc-r...ture-discussion-of-me-cfs-14th-feb-2018.2392/

 

When there's a Westminster Hall debate there's a specific live TV stream for that... Great thing is if you miss the start you can watch from the start. If you see what I mean! And it'll all be on Hansard the day after.

 

Yes, I mean that livestream.

 

Go to Parliamentary TV on the day, then look for Westminster Hall debates. I think that's how I found the last Westminster Hall debate I wanted to watch. Hopefully somebody more together will find you a better answer!

 

Thanks @ladycatlover!