ME charities' response to the Reuters article

The following posts have been moved from the Reuters thread.

Anybody else think that our UK charities have been rather lacklustre during the last week?

A rare example
https://twitter.com/user/status/1107995510152052736


I understand not wanting to fuel Sharpe's efforts by linking to his article more than necessary BUT of course it did blow up on social media and all the embedded SMC cronies made sure that their media channel amplified his message. All I've seen is AfME posting a statement, which I'll admit to not reading as I'm assuming it's their normal weak corporate speak, in response to the Liddle article, and this from the MEA, where they describe an article that conflates CF and CFS at the wave of a hand and also supports Sharpe's scare line of "driving the researchers away" as "more balanced"!

Where are their messages acknowledging that there is shit being flung about, that patients are being made to feel shit, but they have this, this and this action/plan/effort to improve our situation in progress? At the moment, from what I've seen, I get the impression that they've just drawn the curtains, looked around their offices, and said, "yup, things are much calmer this way". If this is an example of the charities 'working' together, I'm less than impressed.

 

I feel exactly the same way @Andy.

I went onto the MEA fb page yesterday evening as I’m a member, to leave a comment about their lack of involvement. I twice started to leave a comment despite my promise to myself to stay offline for this special time but both time the message was gobbled up. I gave up. I’m not even in UK currently. The positive comment about Dr Porter’s piece wasn’t justified imo. It was well behind the game.

It would be good if Charles Shepherd could be alerted about our disappointment. It’s been a hell of a week. @Russell Fleming.

ETA: it’s more than disappointment. We are being left without support by our own allies it seems.

ETA: short comment now added to MEA fb page. Lots of critical comments there about MEA lack of involvement. NO comments from CS or @Russell Fleming. Can see no point in belonging to MEA after this. They are leaving pwme to suffer alone and not responding to a coordinated attack. CS has media links. Why is he not being interviewed on mainstream media?

 

What Binkie4 says.

 

The chosen strategy seems to be ineffectuality. They seem not to have grasped the idea of judgment in default of defence.

If popular, political and scientific opinion were not affected only by science the SMC would not exist.

 

If that were the case one might expect them to inform their members (of which I am not one) what they are doing. Who was the politician of whom it was said that he was going around the country stirring up apathy?

EDIT it was Willie Whitelaw's description of Harold Wilson in 1974.

 

Comment under one of todays blogs/articles (can't remember which one):
"Joan Byrne
It should be noted that there has been NO OUTCRY from any of the mainstream ME charities which is a complete disgrace. They have sat back and allowed very ill people to take on this onslaught and counteract it. Shame on them. They know who they are. Happy to take the money raised for them but not so happy to slam this disgraceful media onslaught."

 

We all know what AfME is, actively no friend of ours, but the MEassociation has failed us for 30 years by being fluffy and mild mannered. It took Invest in ME to start moving things forward.

 

Yes (and thanks for adding the word "lacklustre" to my vocabulary).

But it's also strange that journalists apparently didn't try to get a comment from the charities and their medical advisors. (The Daily Mail article at least linked to a video with CS.)

I am thinking about how journalists and editors new to the field would know why @Jonathan Edwards qualifies to be one of the best informed experts on ME research and research policy. It seems to me that unless they delve in some S4ME forum threads, they won't know.

I think somehow this info about Jonathan should be easy to find for anyone googling ME research (hope it's ok that I put your comment on a strange sentence in the Reuters article out of context and slightly amended the info given in your post , @Jonathan Edwards?):

"Jonathan Edwards analysed potential treatments on ME in a paper in J Health Psychology.
He analysed the analysis in a Cochrane review as a referee.
He was the only UK scientist to be recently asked to take part in an advisory board for the MRC on strategy in the context of inviting ME research proposals.
More generally he had been asked to advise, from an independent standpoint, in various ways, NIH, MRC, Wellcome, three ME charities, Cochrane, the UKME Biobank, etc. about the quality of ME research."

Thus, how about creating a Wikipedia article on your person, Jonathan Edwards? We could then try to link to you on the Wikipedia article on ME.
As an alternative or in addition, I don't know whether you would like to add some information about your involvement with ME research to your personal webpage at your university?

Just a thought.

 

My comment on the MEA Facebook post of the "more balanced" article.

 

All the articles supportive of Sharpe won't have even tried. This isn't 'proper' journalism in action, this is fake news in action. Balance isn't required, only their biased message.

Jo has an MEpedia page (which could do with a bit of work) - https://www.me-pedia.org/wiki/Jonathan_Edwards

 

I think the whole strategy has been woefully misunderstood, correction, miscalculated.

The original aim of not sharing the Reuters piece was to not give it oxygen so that the mainstream media wouldn't pick it up.

But before it came out, we didn't know that it was Reuters. But given it was Reuters, softly softly is not going to work - it was always going to hit every major news organisation.

To then not respond is a stupid strategy. By all means #ShareGoodScience as well, but this also needs a robust response from the charities - and ideally they should get together and show some force and unanimity in this.

 

I think that you are being unduly benevolent in giving them the benefit of this doubt. I knew, or had a reasonable suspicion which turned out to be correct. Other members clearly knew. If the charities did not then their intelligence gathering operations are not up to much.

EDIT I was specifically requested to stop dropping unsubtle hints, it already having been made clear that express mention of the details was unwelcome.

 

By whom?

 

Paraphrasing. "hey guys, we know you've had a shit week, what with all the media and stuff, but here's how to order t-shirts from us - as they say, 'every Liddle helps' "
https://twitter.com/user/status/1108325866243792897

 

I think the tactic of ignoring the bad Reuters article and sharing older, good articles wasn't the right strategy. We are sharing those articles mostly with ourselves, I'm afraid.

I think we should use the attention that is given to ME/CFS in news media, to push our own narrative. Our online presence is one of the strongest means the ME community has to raise awareness.

By politely commenting on articles on social media and news websites - like many on this forum have done excellently - we show to editors, journalists, and readers that something is not quite right in their narrative, that this is a hotly debated issue that needs further concern etc. Those comment sections are a way for the ME community to reach out to a wider audience.

So for the next time, if something like this happens, instead of trying to ignore or bad article I think we should try to make our voices and arguments heard as loud as we possibly can.

 

Someone who reasonably assessed the risks of potentially damaging communications being directed at the journalist. On balance it was reasonable to comply. It is astonishing if the patients organisations were not aware.

 

Decent co-ordinated PR is direly needed. That this has gone on for so long with no co-ordinated response just perpetuates the situation.

 

In principle I agree, but co-ordinated by whom is a key question. And who would decide the terms of reference? (Rhetorical questions only , I don't expect you to provide the answer Amw66).

Right at the moment, I wouldn't trust the MEA, and certainly wouldn't trust AfME.