IIME Statement on SMILE Trial

[Yogi]

Invest in ME statement on SMILE Trial.

This is a real charity as always standing up for people with neurological ME.

http://www.investinme.org/IIMER-Statement-1709-01.shtml

Please read this article and look at the pictures.

It also mentions about Lynn Gilderdale and it would have been her 40th Birthday now. Since her death we have achieved very little in terms of biomedical treatment and instead had the spectacle of the SMILE trial.

I have been very angry at the SMILE trial and it appears that IIME are also angry. That is no surprise. It is good to see that they are angry at the continued abuse of pwME.

Who are these organisations/charities in the big tent that they are referring to? They have blood on their hands as collaborators.

We should ALL be angry. Otherwise nothing will change!!!

It is shameful that any self-respecting researcher would participate in this.

It is disgraceful that any media outlet with any integrity would just take the press release of a media centre which is known for promoting a false view of ME and then avoid doing even the most basic of journalistic tasks – such as research of the information.

It is especially disgusting to witness the hypocrisy of some organisations who now complain about this training programme - yet all the while seem to be happy to sit in the same “big tent” along with the SMILE Trial PI, in a so-called collaborative organisation which continues to support this sea of research dross.

What a sickening spectacle! Any ME charity or researcher promoting this training programme, or working with the people that carry out this research, is doing a great disservice to ME patients.

while some are sitting happily in the establishment big tent alongside the SMILE Trial PI and do not see anything incongruous in that situation;

 

[Londinium]

Well, in a week in which ME patients have been facing the full onslaught of the smears about them being abusive, I'm sure that statements like...

They have blood on their hands as collaborators.

...are a massive help.

 

[Esther12]

That is a weirdly drafted statement. I don't know what they wanted to achieve with it.

 

[Snowdrop]

@Esther12

I have been very angry at the SMILE trial and it appears that IIME are also angry. That is no surprise. It is good to see that they are angry at the continued abuse of pwME.

Who are these organisations/charities in the big tent that they are referring to? They have blood on their hands as collaborators.

 

[Yogi]

Well, in a week in which ME patients have been facing the full onslaught of the smears about them being abusive, I'm sure that statements like...



...are a massive help.

I am glad you think so.

The fact is that pwME have died, are dying and are continuing to do so and (millions disabled and many bed-ridden) and we have psychs still claiming we have false illness beliefs and using propaganda of this abuse narrative to smear us and to shut down any criticism of their trials which cause harm and prevent biomedical research and treatment.

Anyone who collaborates with them does have blood on their hands.

Anyone who cares about pwME needs to be as angry at the collaborators.

 

[Wonko]

I am glad you think so.

The fact is that pwME have died, are dying and are continuing to do so and (millions disabled and many bed-ridden) and we have psychs still claiming we have false illness beliefs and using propaganda of this abuse narrative to smear us and to shut down any criticism of their trials which cause harm and prevent biomedical research and treatment.

Anyone who collaborates with them does have blood on their hands.

Anyone who cares about pwME needs to be as angry at the collaborators.

I used to feel like this, on one, largely dormant, level I still do.

It takes a lot of energy to keep it up, it achieves absolutely nothing, none of these people are going to prison, none of these people are being struck off, none of them are even being sanctioned.

One thing I cannot do as a pwME is waste resources doing something that has no/cannot have any positive result, and when I allow myself to think about it too much I get f***ed over by my M.E. - so I don't.

As has been pointed out by others people, general people, don't like militancy they don't understand, people don't understand, or wish to understand, the situation, calling for blood just turns them against us, and any advocates. It's not a productive approach, no matter how "right" you are (IMO).

I've found anger can be a useful tool when dealing with M.E., but it has to be used sparingly, preferably only in a crisis, to get you out of a hole. This "battle" is not a "crisis" in that it's a long term issue, not short term, it is unwise, from a personal perspective, to use anger in the way you seem to be, when you have M.E.

 

[Yogi]

As has been pointed out by others people, general people, don't like militancy they don't understand, people don't understand, or wish to understand, the situation, calling for blood just turns them against us, and any advocates. It's not a productive approach, no matter how "right" you are (IMO).

Who is "calling for blood"????????

It was a phrase about how the psychs have caused so much harm and "have blood on their hands". Also those who collaborate with them.

I have not called for blood but feel we as a community should try our best to stop needless and unnecessary suffering. We should all be able to agree on that surely?

But apparently there are some who collaborate with those who have abused and harmed us, as IIME have stated, on prolonging our suffering who also are acting as patient representatives.

 

[lilpink]

That is a weirdly drafted statement. I don't know what they wanted to achieve with it.

I disagree. I think it's perfect. It's a shot across the boughs... to anyone and everyone, the BPS and those who collude.... just 'stop it'. I'm so glad they've said it. Really glad. It's everything I would say myself..and probably have done.

 

[Wonko]

Who is "calling for blood"????????

It was a phrase about how the psychs have caused so much harm and "have blood on their hands". Also those who collaborate with them.

I have not called for blood but feel we as a community should try our best to stop needless and unnecessary suffering. We should all be able to agree on that surely?

But apparently there are some who collaborate with those who have abused and harmed us, as IIME have stated, on prolonging our suffering who also are acting as patient representatives.

You certainly appear to be, as is the IIME statement. Calls for "respected" researchers to be stopped, accusing people of being collaborators, even with overwhelming evidence, if people don't understand the evidence, look like militancy, a call to arms. It is always safest to assume, given that anything posted on the net can be accessed by those with the will/ability/tech to do so, that our opposition can spin things to make such, internally apparently reasonable, calls look very bad for us - as they have done in the past.

I don't disagree with anything you've said, I don't really disagree with anything in the statement. I think it bad public relations to say it in the way you, and it, have done. without a plan to achieve what you want to achieve. IMO it's just making bad PR waves to no effect.

Of course we should try and stop needless and unnecessary suffering, in all area's. The question is how, as metaphorically jumping up and down with virtual froth coming out our mouths doesn't seem to have had the desired effect. That's a serious question - how? The opposition control the funding, the research, the ethics committees, the media, they control pretty much everything, so...how?

You were posting about collaborators before the IIME statement, unless it was released several days before it was posted on here, so I'm not sure using it as a reference/source for you assertions is particularly valid.

edit - your entire rational/approach seems to be coming from anger, whilst very understandable, this is not likely to be productive in a political sense, and is likely to be destructive in a personal sense. Finding a way to do it without the visceral anger is likely to be ultimately less personally destructive, and more productive. We need people, calm, smart, politically savvy people to do this, I am not capable of it, are you?

 

[Londinium]

we have psychs still claiming we have false illness beliefs and using propaganda of this abuse narrative to smear us and to shut down any criticism of their trials which cause harm and prevent biomedical research and treatment.

...and using terms like you use play right into that. If I were looking to push the abuse narrative so that people didn't look too closely at my dodgy trial, the first thing I'd do is take language like this and say 'see, they even abuse their own charities'.

My view is this: don't like what an ME charity is doing? Simple. Don't donate to it. Pick a charity that does meet your criteria and donate to that instead. Using language like 'collaborators' as if a charity is some kind of Vichy regime just makes you - and by extension all of us - look hysterical. And given that at least one part of the scientific community is looking to portray us as suffering from hysteria, it's a massive own goal.

(Aside from that practical argument, there is also the fact that whilst you might not agree with a policy position, instead of treating it as (in your view) misguided, you treat it as if it has been made deliberately in bad faith. How about considering that, just perhaps, people can have shared goals but differing views on how to get there? Rather than this simplistic narrative of there's my view and anybody disagreeing with it is evil...)