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

That's a shame.
Weren't you living in the area at the time @MeSci ? Or have I miss remembered?

 

I was in Polyphant. I checked, and my water came from elsewhere. But I did go to Camelford sometimes, I think. My memory is hazy.

The paper is called 'The Legend of Camelford: medical consequences of a water pollution accident' and it's by David, A S and Wessely, S C, dated 1995. I can find bits of it but not the whole article for free.

 

What a thoroughly offensive title. A humorous reference to the Legend of Camelot I expect, but it's hardly a subject for levity. Everything's just one big joke to Sir Simon.

 

As in "the legend?"

"What's afoot?"

 

https://sci-hub.tw/10.1016/0022-3999(94)00085-J

 

Is it worth sending a response about how PACE has been used (& misused) here in Australia?

 

I would say yes. Just an outline summary of the major harms maybe.
The person I was discussing it with last week, was keen to get evidence of PACE impacts in other countries. She had something from USA.

Even though this is a debate only lasting 30 mins, the MP is able to get a lot of info over quickly, so a reference to "these misleading conclusions have meant that CBT and GET have formed the basis of treatment not only in England....

Although the focus on 20 Feb is a 30 min debate. the subject will continue to be researched and form the basis for further parliamentary action, especially as the Clinical Guidelines are being redone. The new Guideline will be produced in 2020, so we need max pressure/social media/gathering of harms/info re what Drs and clinics are currently offering around the world.

The number of emails received is also useful - shows that so many people, including from other countries are horrified by the negative impact PACE has had on people with ME and the block on biomedical research.

Thanks Simone

 

@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.

 

@Inara @Joh

 

@Nicolas the french guy

 

I very much agree. Although it is not clear to me exactly what the aim of the 'debate' is. I would have thought that if it was about PACE the discussion should focus clearly on the conflict of interest and the poor science quality. If it is an excuse to raise the profile of ME that is OK but that would be a whole different issue for a 10 minute presentation and multidisciplinary themas and anti-virals should certainly be kept well out of it. Multidisciplinary team more or less equates to MUS service - get a load of girls along to provide therapies based on voodoo.

 

Already done last week:

My understanding is that it's already fairly well-accepted that PACE was substandard science, to say the least, and this is now about demonstrating the real-world impact it has had on patients. Hopefully it will give them a reason to oppose such bad practices in the future, instead of ignoring it as a purely abstract academic matter.

 

Could you please PM me with the email address you used, @Valentijn I'll send one from Norway as well.

 

I think @Cheshire is based in France (apologies if that's not correct).
@ScottTriGuy is one of our Canadian members.

I'm sure we have members from Sweden (@Helen ?), Bulgaria? (@dadouv47 ?), Spain (can't remember their user name), Ireland (@Tom Kindlon ), a number from New Zealand (@Hutan as one example).

For those tagged who are new to this thread so don't understand the context - a Scottish MP is seeking feedback from patients who have been affected by the PACE trial in any way, so we are trying to get patients from as many countries as possible to send her an email so that she understands how wide reaching an effect the PACE trial has had. The MP's name is Carol Monaghan and her email address is carol.monaghan.mp@parliament.uk.

 

Thanks for this great summary, will write an email and also forwarded it.

 

Carol has a Facebook page, would be good if those of us on Facebook show some support on this post, even if it's just a like.

 

I posted this quite early on this thread but no direct answer.
@Adrian