Action for ME has joined S4ME

Would it be OK for me to go over to AfME Facebook page or PR and post as s4me.info?

 

We can't possibly answer those questions, you'd have to address them to the Biobank itself. I can tell you that both the Biobank and AfME opened their account with official email addresses.

Are you asking for official sanction from the committee to do so? The full committee would need to review the request. More generally, if we found out somebody was impersonating the forums then of course we'd request that the account be deleted for exactly that reason.

 

Andy I dont care who joins here in terms of disagreeing with them on past issues etc but surely we have a rule here, one person one account so how can an organization name join here without making it clear its a single person posting or not? Who exactly would one be debating against or agreeing with if one has to address a whole organization.

 

No, but they joined to engage with the community and they have done.
Why have AfME joined?

Also with UK Biobank they sign their posts Jack/Eliana.

AfME have not posted, replied/responded to tags.

 

Obviously not, that's my whole point, its not for one person to hide behind a whole organization name and claim to speak for everyone without revealing themselves.

 

I don't disagree. But even if that's true then new pwME might be educated about AfME and to be more discerning about how they spend their membership fees.

Censorship, in my view, makes it look like we're the ones afraid of having discussions and debates. Not only are we not afraid to have a conversation, I believe that we are more than capable of holding our own.

 

AFME have not participated on this forum, or responded to alerts. So there is no discussion with AFME going on.

 

I actually would disagree. Not that well read, well qualified advocates should be overlooked, since it was their efforts that got us to where we are. But things are changing. A summit of clinicians in the USA have unanimously rejected the findings of PACE. There are at least signs that the Dutch authorities may go in the same direction. An academic colleague at QMUL has referred to PACE, not as a jewel in the college crown but as 'an absolute bloody disaster'. AfME look to be left clinging to a sinking ship with the captain happily rowing away in the first boat.

 

Very true. They have the option to respond but haven't, yet. That's their choice.

We can't start kicking people out because they don't join in a particular thread or post. There are a number of members who don't or can't join in. If all members are equal then they have to be treated that way.

 

I think it would not be acceptable for the CEO or a senior board member to come here and post without identifying themself. If more than one person is going to use the account it will be ludicrous if those people disagree with each other using one name. Or they could all just agree and toe a party line. As they have just got a new sponsor this could be the sponsor making them go on a PR jaunt to get their profile out there to promote their generic stuff.

Personally I have no issue debating anyone here or anywhere else, I can go all over the internet to tell people they are talking pish, it would actually be easier for me logistically if they came here to tell them such.

 

The content of this thread, O'Dowd and Crawley study, and AFME sponsored Webinars by Hazel O'Dowd for GPs. Maybe AFME could engage with the concerns about those. Whether on this present thread or the original one, linked here, I dont know

https://www.s4me.info/threads/odowd-crawley-early-intervention-study.2931/#post-52216

 

Companies sign up for generic accounts on YouTube, Reddit, Twitter, forums and on customer service websites all the time. They are inevitably staffed by several people but make it clear that they speak for the company when they do so. It's like having several spokespeople for a company. I'd assume that as @Action for M.E. have signed up under a generic name, then it will be treated as a 'voice of the company' account.

 

Science requires debate/discussion. @Action for M.E. are still around whether PwME like it or not and so IMO they are very welcome to be here.

With the caveat that joining and then remaining silent and not engaging with other members is quite creepy. In other words . . .

Would like to see some of that TRANSPARENCY that AfME declares on their website as a value they hold as important.

Transparency requires communication.

Perhaps for our part we might consider what exactly PwME are wanting from AfME as a charity that is supposed to represent us.

I'll start. Esther Crawley's work has now been exposed as lacking any scientific rigour. So any association there would be problematic.
Next up is Hazel O'Dowd. Her work should be examined by those with the skills to do so and if her work has the same lack of rigour I would expect a charity that purports to advocate for PwME would reconsider any connection to poor science.

We are a group who have for decades -- literally decades-- been variously stigmatized, gaslighted, ignored, condescended to, and basically had our reality questioned in ways that few others have experienced.

We have had hopes dashed again and again. Any organisation that declares they are our advocates need to absolutely be clear about not supporting those who have done harm (see above) and cost us decades of our lives to be put on hold while no real monies were being used for anything that might actually help us get out of this hell.

We've said it here so many times. Talk is cheap. What you do matters. And we are here to hold you to account -- Because you are a charity working for People With ME -- US.

For my part I'm willing to beg you @Action for M.E. You've by now seen the film Unrest. You know how we suffer and you know there is no good that will come from spending any money on more Psycho or social research. Our needs are great. There are so many of us.

Please help in a way that makes a difference OR may I suggest that you morph into a Public Relations firm -- so far that seems to be your forte.

SD

 

While I wholly understand peoples' concerns, the reality is that for all we know user @pootietang69 could be EC, @fluffmygarfield could be SW and @totallytubular PW.

It's human nature to relax into some idea that we're all who we say we are and that we have some privacy or control here. We don't.
We share the world and the internet. And we share responsibility for making and keeping this place great, whoever is in here.

 

It would be good if AfME would give full and thorough answers to the questions that they have been asked on this thread.

 

I don't understand your POV. Isn't it better that AfME belong to a group that is following the research so that they can be educated and have the latest up-to-date information? Isn't it better that they understand ME patient's frustrations with the current medical system in the UK in regard to ME? Judging by their website, they have some very outdated beliefs. Banning them from S4ME doesn't help anyone.

 

As a newbie to the ME world, it has been on online forums where i have become acquainted with the history, gained the best advice, become empowered to advocate, brushed up on stats, learned my way around scientific papers, and found solidarity and solace when it seemed the world was slowly going mad.

This is the world that few comprehend, and by being here, and engaging , the full picture warts and all can be appreciated.

It is only through discussion and debate that ideas are conceived and tested: i think that AfME have a lot to gain. In this forum we can both see the products of past " science" and the hope for the future. Perhaps being part of a debate and not the recipients/ perpetrators of spin will enable a clearer view.

Things have been changing at AfME: it is time for them to be judged on current actions- there is much to be done to tackle misinformation, miscategorisation, and the lunacy that is MUS/ FND .

However, to move forward you also have to acknowledge the past, and i think they should heed Dr Jose Montoya's advice and apologize unreservedly for past actions to enable things to move forward.

You cannot change the past,( you also cannot forget it ) but you can challenge the present and potentially change the future.

 

AFME have had decades to catch up, understand and change/improve so they no longer support and collude with the damaging BPS policies and practices that have and continue to damage sick patients, Decades. I dont comprehend the mindset here of "We could educate AFME". I do think that shows lack of comprehension of how the UK BPS World operates, how its power and influence networks and perpetual spin operates. AFME is still deeply embedded in those networks, which still control treatment policy for us in the NHS. Its really late in the day to think we could educate AFME.

And we dont have a level playing field. AFME is operating from a long established foundation of power.