#MEAction petition: Stop GET trials, stop MAGENTA ("PACE for children") ***UK deadline 12th March***
- Thread starter Sasha
- Start date
JaimeS
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I like it, @A.B., feel free to PM me though cannot guarantee we will use.
We did say in several places "shown ineffective on long-term follow-up" and "placebo-like effect by original measures" to show that for some it just causes no change. Strongly suspect that those are the people who have limited their activity in other arenas in order to have the strength to do the activities recommended by PACE therapists, and are doing the same amount of activity either way. Since actometers were removed, the world may never know.
I wish we could have gone deeper into how this is NICE criteria folk, but is being applied to everyone down the line: from Oxford to Fukuda to CCC to ICC, PACE is being used to justify an "exercise... exercise for everybody!" outlook.
However, given that there are eight or nine prevalent diagnostic criteria, describing the differences might be too complex for the layperson. Even something like "these trials were performed using a criteria that does not describe all patients" may well register as a giant ¯\_(ツ)_/¯ to non-patients who don't understand the magnitude of those differences.
Um, this took my last iota of energy to write. Sorry guys, back soon. Also, global just broke 500!
-J
I have added this to the petition on my facebook page
Sophia Mirza 1973 - 2005 Her mother writes 'The doctors and psychiatrist threatened Sophia with sectioning in a mental hospital if she refused to go into a particular M.E. Clinic. They carried out their threat in July 2003. The effects on Sophia's health were devastating. She died on 25th November 2005. She was only 32.'
http://www.25megroup.org/info_me_stories.html#lynnstory
Sophia Mirza 1973 - 2005 Her mother writes 'The doctors and psychiatrist threatened Sophia with sectioning in a mental hospital if she refused to go into a particular M.E. Clinic. They carried out their threat in July 2003. The effects on Sophia's health were devastating. She died on 25th November 2005. She was only 32.'
http://www.25megroup.org/info_me_stories.html#lynnstory
I am very glad this petition has been started!
Just wondering if this should be in the Advocacy section
Probably, but it's sort of news too...
NL93
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Done! This graded exercise madness really has to stop.
JaimeS
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It upsets me so much when I keep reading that the pscy-bullies say there is no evidence of harm from their treatments, whether CBT, GET, or patients being forced into a psych ward against their wishes. We know there is evidence of harm, including deaths, I feel that the poor people have died in vain if we don't fight on in their name.
Has no-one ever seen a lawyer about harm caused by these treatments, I know the chances of winning, or proving harm would be very difficult, but could we not find a lawyer that all these cases could be reported to, to at least gather some evidence?
alex3619
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Twice as good as me. I only got to sign one of them.
I doubt it will have the desired effect, but it will still turn up the heat. The more pressure the better. The pressure cooker effect?
AndyPR
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UK now at 552.
Global now at 1166.
Global now at 1166.
The #MEAction PACE petition that got 12,000 signatures left the PACE authors and The Lancet (to whom it was delivered) in no doubt that 12,000 patients wanted their misleading analyses retracted and the data released. It killed the idea that a "tiny, vocal minority" of patients objected to what they were doing. The petition was mentioned in the Wall Street Journal and was part of the evidence presented at the tribunal that 12,000 patients, protesting peacefully, wanted the PACE data released - and that tribunal came down in favour of data release, mentioning the clear public interest as part of the reason for doing so.
With #MEAction, I think we're past the point where weedy, badly worded petitions with a few hundred signatures are all we can produce. We're networked into thousands and thousands of patients now. I believe we can get this past 10,000 in the UK and force a government response, which will help convey to these funders and ethics committees the scale and seriousness of our concern. And just as the PACE petition did, this GET/MAGENTA petition will be a very useful (peaceful) weapon in the hands of people like Tuller, Racaniello and others.
The #MillionsMissing campaign is only two weeks away, and that will help pull in more signatures.
So, crack on, UK peeps! Sign, share, tell your friends and family!
575 signatures this morning and an #MEAction email has just gone out, so I think we're going to see this thing take off.
Please share the heck out of it on Facebook, Twitter, all that stuff!
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alex3619
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- Logan, Queensland, Australia
@Sasha, I do agree we can have an impact. The issue here is how much the UK government can influence this even if they wanted to. There is no doubt the tide is turning, and every opportunity we can use to increase the pressure we should take. What tends to happen with pressure though is its the weak points that give way, not necessarily where we are aiming. Yet if we sat back and did nothing then things would take much longer. So even if nothing comes of a petition, its still a success.
PS A case that shows what I am talking about:
Such actions have unforeseeable consequences and can work in our favour even if we see no immediate effect.
PS A case that shows what I am talking about:
Such actions have unforeseeable consequences and can work in our favour even if we see no immediate effect.
I don't think the issue is what the govt can do - I think it's a question of general pressure. A UK govt petition with a lot of signatures is a very useful tool, regardless of whether the govt acts. This is an action of awareness and political pressure, IMO - and hugely worth doing (which I think we both agree on!).
JaimeS
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12% of the way there in the UK -- and I have strongly encouraged ppl in the UK to bring iPads to their local protests to get signatures on the day of the protest itself.
I love that the UK has a map on the petition where you can see which areas have people who have signed. A great way to show your MP that this issue is meaningful to their constituents!
I love that the UK has a map on the petition where you can see which areas have people who have signed. A great way to show your MP that this issue is meaningful to their constituents!
I love that map! Here it is:
http://petitionmap.unboxedconsulting.com/?petition=166601
It's turning redder as we get more signatures.
If you hover your mouse over a constituency, it tells you how many have signed the petition in that constituency. There's also a drop-down menu for constituencies below the map that gives you the same info.
1,201 signatures now!