ME charities' response to the Reuters article

Andy

Andy

Senior Member (Voting rights)
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


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.
 
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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?
 
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Binkie4 said:
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. 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?

...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.
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What Binkie4 says.
 
It's possible the MEA are trying hard to get CS or someone else onto the media and failing. But I agree, the response seems to have been pretty feeble and I'm angry with the MEA for describing Dr Mark Porter's article in any positive way. Mark Porter is a GP who does a regular BBC radio program - praising his misinformation is not the way to go if we want to educate him and the public.
 
Trish said:
It's possible the MEA are trying hard to get CS or someone else onto the media and failing
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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."
 
To be fair to CS, he does a huge amount of media stuff, has ME himself, is not young, and does it voluntarily. The MEA has a publicity officer or media officer or something - he should be onto this. All I've seen so far that might have emanated from an MEA media strategy has been some patients stories in local media, often with mixed messages and almost always about photogenic young women.
 
Andy said:
Anybody else think that our UK charities have been rather lacklustre during the last week?
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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.
 
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My comment on the MEA Facebook post of the "more balanced" article.
So conflating CF with CFS, claiming that patients don't want proper investigation of the symptoms and backing Sharpe's pathetic argument that patients are anti-science and are driving researchers away counts as more balanced to the MEA? Wow, the bar must be really low to you guys - this is still a rubbish article for pwME.

All the UK charities have dropped the ball in the last week by abandoning patients on social media to Sharpe's and the SMC's fake news about us. You haven't even tried to provide an alternative narrative based on the actual good that you do do i.e. where was your heavy promotion of the UK ME/CFS Biobank, a world leading institution that both you and patients are involved in?

Instead it's been the patients themselves coming together and supporting each other in attempts to counter this false narrative. I've been super proud of us as a community - sadly 'our' charities have only disappointed.
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MSEsperanza said:
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.)
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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.

MSEsperanza said:
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.
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Jo has an MEpedia page (which could do with a bit of work) - https://www.me-pedia.org/wiki/Jonathan_Edwards
 
Andy said:
Anybody else think that our UK charities have been rather lacklustre during the last week?
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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.
 
Lucibee said:
But before it came out, we didn't know that it was Reuters.
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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.
 
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Lucibee said:
To then not respond is a stupid strategy.
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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.
 
Lucibee said:
By whom?
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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.
 
Amw66 said:
Decent co-ordinated PR is direly needed. That this has gone on for so long with no co-ordinated response just perpetuates the situation.
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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.
 
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