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

Liv aka Mrs Sowester said:
That's a shame.
Weren't you living in the area at the time @MeSci ? Or have I miss remembered?
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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.
 
MeSci said:
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.
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https://sci-hub.tw/10.1016/0022-3999(94)00085-J
 

Attachments

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.
 
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.
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@Inara @Joh
 
Esther12 said:
If we've got a chance to challenge someone from the Ministry of Health on the specific problems with the PACE trial there's no way it would be a good idea to start talking about "lack of proper multidisciplinary NHS hospital-based services", treating with antivirals, or mitochondria issues.
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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.
 
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.
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Already done last week:
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.
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Jonathan Edwards said:
Although it is not clear to me exactly what the aim of the 'debate' is.
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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.
 
Valentijn said:
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.
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Could you please PM me with the email address you used, @Valentijn I'll send one from Norway as well.
 
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.
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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.
 
Andy said:
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.
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Thanks for this great summary, will write an email and also forwarded it.
 
Sly Saint said:
(As a side issue, could a sort of international group be set up here on S4ME with 'reps' from the different countries so that, rather than attempt to tag different people, a general 'International' tag be used to notify all countries? @Adrian @Andy )
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I don't think that is possible. I think the best I could do is set up a group and then send alerts through the admin console (so it would need to be me sending them). Xenforo doesn't allow groups to be tagged as far as I can tell. I will try to look for an addon that may allow it.
 
Yes @Andy I'm French. It's a bit complicated for France to say that the PACE trial has had a bad influence because there are no official guidelines here. But nonetheless, CBT and GET are often cited as the treatment of choice here and there. And as it has prevented the disease to be properly researchered, it sure has had a negative impact. So I don't know what can be said precisely.
 
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