ME charities' response to the Reuters article

Can we not ask someone like Jerome Burne to step in and write a good riposte?
I am not sure if he is on S4ME but he could be alerted and invited?

Jonathan perhaps?

Contact
Editorial: Jerome Burne editor@healthinsightuk.org
Media & further information: Gillian Waddell gillian@fuelrefuel.com or Susan Leigh Susan@fuelrefuel.com
Webmaster: Peter Lurie/lightworkerarts.com | webmaster@healthinsightuk.org

https://jeromeburne.com/jerome-burne/

Blog Body of Evidence
Blog background
This tells how I became caught up in debates about evidence and medicine and why I believe like many others that the way drugs are tested needs to change.
It answers the questions: Why have your started this blog? And: What do you hope to achieve? It also explains why it’s guaranteed that the older you get the less evidence based your treatment will become.
I’m doing this for my own good but if it is successful you will benefit hugely as well.

 

And that's just it.

Wessely and Sharpe and co have put you all in an impossible situation, and they know it.

If you organise and co-ordinate a campaign, they can say, "Look! It's an organised campaign!"

But if you don't.... Nothing happens.

We have to get over that.

 

Personally I'm not worried if there is an organised campaign, in fact I would prefer there is organisation, I'm just concerned about who would be making the decisions in that organisation.

 

I have just emailed Jerome to alert him to our plight!.

 

We have to remember that this is all of Wessely's making (and probably by accident, not by design). He was the one who politicised the "ME support group" in the late 1980s and implied they were organised campaign groups when they were just collections of patients seeking help and support from one another. They then had to become organised to counter that, but in doing so, ended up being defined by it.

The problem is that unlike a political organisation, a patient group is never going to agree on everything (I know, I know, but there is no 'manifesto' as such), and will struggle to be effective in that arena, because that's not what they are for.

To some extent, we/you are probably more effective as individuals. As soon as we get "grouped", the assumptions about ideologies and other alignments (with anti-this, anti-that) start being made (as you have done with the SMC). But that doesn't mean we can't be organised.

 

My post about him is above.

Contact
Editorial: Jerome Burne editor@healthinsightuk.org
Media & further information: Gillian Waddell gillian@fuelrefuel.com or Susan Leigh Susan@fuelrefuel.com
Webmaster: Peter Lurie/lightworkerarts.com | webmaster@healthinsightuk.org

https://jeromeburne.com/jerome-burne/

 

Jerome Byrne is sympathetic to the patient point of view. He wrote a piece previously and I have met him for lunch a few times. I don't actually think he is that interested in the key issues here. He is interested in using diets and rather against overuse of drugs. He is not into the methodology of trials.

 

Any response would need to be very carefully done. I'd rather have the charities stay quiet than rush out something that got the politics wrong.

It probably would have been best to put out a brief joint statement but we're in a difficult situation and I understand that rapidly putting together something expertly phrased would be difficult to do.

I think I'd prefer charities taking a cautious approach than trying to respond immediately. We could have people posting ideas/drafts for a possible joint response in here? See if we can come up with anything amazing that others could unite around?

 

I’m not impressed with MEA presenting this as regurgitation of old news, psychiatrist no longer doing CBT because of threats so we will maintain a dignified silence. Their current MS SW campaign, It’s as much about maintaining PACE as considered gold standard , CBT & GET as treatments and Lashing out at tuller and cochrane threats etc and about controlling the CFS narrative, if we want to take control of that narrative we have to challenge it and take advantage of opportunity go to do. In all they’ve said they don’t even mention Michael Sharpe by name and this has happened before regarding wessely etc, I don’t think this is out of disdain but out of fear of seeming unseemly, or having a public fight with the establishment. I think that that AFME used deflection tactics to make this about that horrible man mr liddle, again they do not take on the actual smear tactics by leading CFS figures, although they did copy #MEa on twitter promoting the positive science stories. I’m afraid mea position of avoiding a fight is just too typical.

I think that a Combined response by charities as has been done before at least in reply to the print media would have been welcome as well as some words of support on Facebook and reassurance that they were going to try to redress some of the false narrative.

 

is @EspeMor on her own as #MEAction UK rep? or is there a team? Maybe as #MEAction appear to be the only ones actually taking any action (that's a mouthful!) S4ME could be included more somehow, or try and get some other local groups involved (we have members here who are in local groups).

But the problem still remains as to how you get the UK media to actually publish anything favourable and retain some control over the content.

This has some good information:
https://www.marketingdonut.co.uk/pr...e-guide-to-writing-an-effective-press-release

something like this article could be used as a sort of template tailored to the 'local personal interest' story, ie a concise list of the elements to include need to drawn up and agreed upon.
https://www.s4me.info/threads/why-m...al-and-ignored-by-most-doctors-jul-2018.8653/

(I know pwME hate the term 'yuppie flu' but to be honest whenever I've mentioned ME to anyone they nearly always use the term and although it is considered a derogatory term I don't think people generally view it that way. And it is exactly the kind of thing that the media appear to like.)

just putting down things as they occur to me.

 

Agree completely!

 

Hi! Yup, I am the UK Coordinator for #MEAction. The rest of the team in the UK is volunteer-based We are doing the best we can and we have been sending letters to every single outlet that's picked up the story (our original article needs to be updated to reflect all that we have done, but it's being done!).

Would love to hear how we might be able to collaborate The problem is huge and controlling the narrative and/or the content is very hard as you point out Sly. We have had some success in the past writing our own pieces and in this case, it's something that might happen but cannot obviously guarantee it.

By the way, it's really interesting and helpful to read everyone's comments about how charities have been handling this, thank you for all the feedback and all that S4ME members do!

 

Here is Charles Shepherd's statement that was posted (in comments) on the MEA FB page:

 

Thanks for sharing it Lucibee, he has used that as the response to my post to them. I have issues with what he has written but at the very least that should actually be posted as its own post on their social media feeds to explain why they kept silent.

 

So one reply to the response from Charles that Lucibee shared above.

Charles replies with

which I'm afraid shows that he doesn't get it.

@EspeMor , we completely get that all in the Forward ME group didn't want to give these articles fuel, but do you feel that the silence from you all was a successful strategy in terms of supporting pwME emotionally? In real basic terms I feel that there should have been at least a message put out saying these media articles are wrong, all you pwME aren't in the wrong, we are working to fund research, to bring new researchers into the field and that hating on seriously ill people is not acceptable. I'm afraid that the agreed upon silence has, in my opinion, left many people feeling unsupported right at the very time when they should have had that message of support.

 

He posted it as a reply to you and then as a separate post on the same article post 7 minutes later.

 

I’d have expected some presence & support from our charities. I’ve been really affected by this weeks attacks in the media. I feel that patients have been abandoned and left to defend themselves with what little strength they have.

I don’t want my friends, family, GP or whoever reading and maybe believing these hurtful narratives.

I’m extremely disappointed. I’ve been very hurt by all of this.