The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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#MEAction petition: Stop GET trials, stop MAGENTA ("PACE for children") ***UK deadline 12th March***

Discussion in 'Petitions' started by Sasha, Sep 12, 2016.

  1. JaimeS

    JaimeS Senior Member

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    That's good news! It loaded a few minutes later...
     
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  2. JaimeS

    JaimeS Senior Member

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    There was another thread where I did the math.

    The 17 million figure was based on the population at the time; should be more like 20 million now. Let's presume that 80% are undiagnosed.

    That's 4 million patients who know that they have ME, CFS, ME/CFS, or some flavor thereof.

    Now, let's presume that 25% of them are housebound or bedbound, and that half of those are bedbound, and not paying much attention to things like this. Let's assume that the most well top percentages aren't paying attention because they're not sick enough to care (sorry, well people). So top and bottom 12.5% are out.

    That leaves us with three million folks who are sick but not too sick and well but not too well.

    But let's not be so enthnocentric -- only about 25% of them speak English. :)

    That leaves 750,000 individuals sick but not too sick, well but not too well, who speak enough English to be on this forum and other US or UK-centered efforts.

    I presume even people who fit all these criteria are sometimes busy and off of Phoenix Rising or their other advocacy-oriented counterparts. Even something that runs for awhile might catch the eye of only a small percentage of these people. There are, for sure, those who are sick but have no idea that places like Phoenix Rising exist; there are people who have swallowed the Wesslean story hook, line, and sinker, and view us as anti-science radicals, I'm sure. ;) As a totally arbitrary number, I imagine we might reach 5-10% of those 750,000. 10% with a HEROIC advocacy effort, and 5% for good advocacy.

    Gelpi's petition got around 37,500 signatures, which is exactly that 5%.

    Now, this is all presuming we have NO healthy allies, but IMHO that's the way we should estimate.

    TL;DR

    I'm very hopeful that Jen's documentary will do some good in regards to making ME/CFS 'sound familiar' to the populace, and garner us more healthy allies. Until then we're reliant on being a clarion and consistent voice for change, so that those who might be interested in signing such petitions as these at least see them.

    Jaime
     
    Last edited: Mar 12, 2017
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  3. Joh

    Joh Inactivist

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    Perfect summary, @JaimeS, extremely interesting, thank you!!! :bouquet:
     
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  4. Silencio

    Silencio Senior Member

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    I also have noticed that a large percentage of ME patients also decamp to identify as Lyme patients, because of tests like Armin and igenex finding so many positive. We lose a lot of people to Lyme who quite likely don't have it but prefer it as a diagnosis.
     
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  5. Keela Too

    Keela Too Sally Burch

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    Well, 9:30pm here in UK. 7,500 signatures - just over actually - so that's good going.
    At least one signature in every constituency... WOW that is quite something... :)

    Any more that we can gather in last 2 1/2 hours will be a bonus - it is difficult work trying to get a petition through when the subject of that petition doesn't affect a huge group of people... so well done to all involved.

    It will still have huge value when presented... and I guess it could be sent to NHS England (or whoever is making the NICE review decisions) as well.

    :)
     
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  6. Jenny TipsforME

    Jenny TipsforME Senior Member

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    This is interesting and about right I think. It is less frustrating than thinking of millions of people not engaging. Of course uk would be far fewer than US, in which case 7,500 is respectable especially for a complex topic. Certainly signatures in every constituency is a very useful soundbite. We should make sure we use this repeatedly!

    Opposing exercise and opposing further research is a hard sell to non pwme. It certainly isn't an easy topic for a petition. An angle I hit on just this weekend (i.e. A bit late) is people don't need to understand why we oppose GET we need to promote it as an example of patient voice being ignored (or as my partner put it in an email to academics, the politics of recognition). On Facebook this wording had much better response

    "Patient feedback has been ignored for too long, it is time to listen to patient voice!
    Many patients describe the harms of graded exercise therapy (GET). Help get our voice heard, UK citizens sign this ME patient petition: https://petition.parliament.uk/petitions/166601 hurry petition ends 12th March"
    With this image [​IMG]

    It's worth remembering for the global petition

    I'm aiming to sleep now and I'm going to have a month off before Petition Exertional Malaise becomes severe! You have to stay within your petition energy envelope folks ;)
     
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  7. Keela Too

    Keela Too Sally Burch

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    So a fantastic last flurry of signatures over the weekend took us to a phenomenal 7620 signatures on the UK #StopGET petition.

    Sure, not as many as patients would have liked to get, but I think for a UK only petition (on what the general public perceive to be only a minority group issue) this is actually an incredible achievement!

    Here we have a significant body of people asking for GET to be investigated. We are not just a few here. This is substantial opposition.

    Go Campaign to stop GET You should be really really proud of the effort!

    As far as I am aware other higher numbering ME petitions have all been of a worldwide scope. Amazing work and many thanks to Jenny Lyus who started the whole thing off. [​IMG]
     
    Last edited: Mar 13, 2017
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  8. AndyPR

    AndyPR Senior Member

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  9. Joh

    Joh Inactivist

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    Congratulations @Jenny TipsforME, you can be very proud!!! :balloons: Didn't realize you started the petition, thank you so much for your hard work and spoons! :)

    This is super interesting! I agree, that in advocacy it's important to find the biggest common ground with people - this could be for example that all parents understand how frightening it is to see your child getting worse by a treatment and to not be allowed any say (and to even fear losing custody if you try to protect your child). Some mommy bloggers have huge number of followers and a lot of mommy forums are very busy, so these could be for example places for us to spread the international petition.
     
    Last edited: Mar 13, 2017
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  10. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @Joh the petition was written as a team effort but one person has to put their name to it for the parliamentary admin process

    Thanks to everyone who's been involved!

    I've got used to pushing the petition all the time though. Hard to switch off now!

    Someone did write a stopGET blog post for MumsNet but they didn't reply. Something to follow up on after a break.
     
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  11. AndyPR

    AndyPR Senior Member

  12. AndyPR

    AndyPR Senior Member

  13. AndyPR

    AndyPR Senior Member

  14. Countrygirl

    Countrygirl Senior Member

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    The two letters below are the written responses to the ethics committee regarding the challenges presented by a patient and an MP who raised concerns about the safety of GET therapy for children

    As this is the PI for MEGA, her answers are alarming and suggests she lives in an alternative universe. She is entirely dismissive of the experiences of patients and the risks she is about to impose on children. It is of serious concern that someone who reveals such a lack of respect for the patients' experience of harm, especially in the light of the fact that so many experienced academics round the world have voiced their concern , should be implementing not only MAGENTA but MEGA too.

    Maybe she has been given enough rope to hang herself here, but at what a potential cost to patients while she is totally dismissive of the experiences of patients who have been seriously harmed by the methods promoted by EC.

    Her answers make it clear in my opinion that she is not fit to be running research on ME.

    http://www.bristol.ac.uk/media-library/sites/ccah/cfsme/study-docs/15 SW 0124 Confirmation of favourable opinion 24.11.16 (1).pdf

    Dr Crawley's response to the above:

    Dr Crawley's response:



    http://www.bristol.ac.uk/media-library/sites/ccah/cfsme/study-docs/Letter to MP 27-09-2016.pdf
    In reply to an MP who wrote on behalf of a constituent raisng concerns about the safety of PACE for children Dr Crawley responded:

     
    Last edited: Apr 10, 2017
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  15. Hutan

    Hutan Senior Member

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    Are any patients of Crawley on record claiming that they have been harmed by GET?
     
  16. Countrygirl

    Countrygirl Senior Member

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    Yes, they have made an official complaint to the GMC. One of which I am aware was forced to endure an intensive course of GET for a week on the advice/order of EC and was left paralysed. The GMC dismissed the complaint, unbelievably. The reason for the intensive exercise regime was that Crawley maintained that 'severe illness is not on the ME spectrum', (direct quote) and therefore the severe state of the child was indicative of a mental health condition..
     
    Last edited: Apr 10, 2017
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  17. user9876

    user9876 Senior Member

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    She quotes Cochrane so it would be interesting to look at how many of those trials that are looked at with Cochrane reported any harms data. The Cochrane analysis itself suffers from outcome switching and also supports the outcome switching in PACE. PACE itself changed the outcomes associated with SAE although if I remember correctly they didn't include the detail in the published protocol but changed from the more detailed unpublished document that was obtained by someone with an FoI. They didn't mention this in the lancet paper. With PACE there were more incidents with GET but they were dismissed by a committee as unrelated to the treatment but perhaps this represents their prejudice and belief in a disease model rather than anything else.
     
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  18. user9876

    user9876 Senior Member

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    Seems strange that she is giving advice on what she believes are mental health conditions as she is not a psychiatrist.
     
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  19. Esther12

    Esther12 Senior Member

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    That spun Cochrane review is the strongest xard they've got. I wonder if Coyne is still trying to get those issues addressed?
     
  20. Valentijn

    Valentijn Senior Member

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    There's been a couple parents of children involved in her trials who have said something to that effect, if I recall correctly.

    I thought Cochrane basically concluded that there wasn't adequate reporting of harms to reach a conclusion, and therefore couldn't conclude that GET was harmful.
     
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