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

ScottTriGuy said:
The disdain Canadians with ME experience at the hands of physicians and politicians can be directly traced back to PACE. Ask a Canadian with ME about their experience with the health care system, and you will hear a story of trauma and iatrogenic harm - either physical (from contraindicated treatment) or psychological (from physician's denying physical symptoms, and denigrating the patient).
Click to expand...
Or worse. e.g Being terrorised (and that is the right word) with implicit or explicit threats of removal of welfare support, and/or sectioning.

ScottTriGuy said:
As Dr Nancy Klimas said (I'm paraphrasing): "They came to the doctor with ME. They left with PTSD."
Click to expand...
So much brutal truth in such a short statement.
 
Last edited:
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!
 
MEMarge said:
@Valentijn please could you do an email re Netherlands if you have the energy, wouldn't need to be long, just emphasises that PACE has led to disastrous consequences around Europe too.

@TiredSam could you or a fellow resident do the same re Germany.
Can't remember current avatar name for French guy @Andy can you think of other country reps.
@Kalliope for Norway. Who is in Canada on this forum?

All ideas and input welcome.
Click to expand...

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.

1f3a5.png
Watch when I demanded that these conflicts of interest be exposed

1f4d6.png
Read more about the upcoming debate: http://www.carol.monaghan.scot/2018/02/07/pace-trial/

1f5e3.png
Ask your MP (if you live outside Glasgow North West) to attend – you can find out who they are via https://www.theyworkforyou.com

1f4dd.png
Get in touch with me if you have been affected: carol.monaghan.mp@parliament.uk
 
Andy said:
ETA: Nevermind, I couldn't get it to show the whole post either, weird.
Click to expand...
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.
 
MeSci said:
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!
Click to expand...
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.
 
I left a comment on Carol Monaghan's FB page.

Over 25 years of being ill with ME/CFS, I'm so glad that somebody is looking at how the PACE trial has worked against patients ever since it was published. I'm very fortunate that I was diagnosed before PACE and the NICE stuff came out - my lovely GP back then told me to rest as much as I needed. Fat chance of that these days with NICE agreeing with PACE!
1f641.png
Thank you Carol Monaghan - MP for Glasgow North West for looking at this travesty of a so called scientific paper! I look forward to watching the Westminster Hall debate.
1f642.png
Click to expand...
 
You must log in or register to reply here.
Back
Top Bottom