New poor Guardian article "ME and the perils of internet activism" 28th July 2019

I have recently made a resource to be edited and added to regarding Professional Codes of Conduct/Ethics for relevant fields. https://www.s4me.info/threads/profe...uct-for-psychiatry-psychology-medicine.10527/

I have just now made a thread to encourage discussion about resourcing each other regarding voicing our discontent or doing some sort of group complaint https://www.s4me.info/threads/makin...spite-currently-pouring-from-the-media.10563/

These are in the Members only area.

 

My mum made her first MEME... or at least we killed ourselves laughing when she described it and I made it for her. Original images are royalty free. Feel free to onshare.

 

@Sean

https://www.s4me.info/threads/me-as...cbt-and-get-in-me-cfs.8902/page-2#post-186343

 

Sigh...

 

https://twitter.com/user/status/1155525554042486784

 

Further to the point Frances Ryan makes in her tweet about The Observer editors, the Observer has its own twitter account @ObserverUK. People tweeting might want to use both guardian and observer tags.

Edit fixed typo in FR’s name

 

The arguments used to defend PACE are mostly medical politics. Political rhetoric has replaced scientific argument and evidence with many PACE defenders.

 

Yes it is. This disinformation campaign by these two professors is so harmful on so many levels.

I don’t know if this is the right place to float this idea. Maybe it’s already done, maybe it’s too agressive. Here’s the plan:

I think there should be an information campaign from our side to attack this planned disinformation propaganda. A truthfull, wellinformed, scientific based story about “Professors are trolling patients to save face” but than in more suitable wording

Till now a lot of their articles are getting published without source checks by the journalists. Our well intended responses won’t get as much views as the original article.
In stead of reacting, we should be pro-active. I guess the two profs are still media campaigning and sending media packages to every relevant British/ English magazine/ news station. Hoping some will pick it up to spew their view. We should do something to stop this.

If we sent our information first to news outlets, it might not be published. But that’s not the goal. When the outlets receive the disinformation from the two profs later on, it will not be the only source the journalist has. Big chance their disinformation won’t spread or there will be more balanced reporting.


These are my two cents.

I don’t know if anybody or organization did this already. I don’t know where to start, so I thought starting to float the idea here. Love to hear your two cents.

This thread is moved to the Member Only discussion over here https://www.s4me.info/threads/makin...spite-currently-pouring-from-the-media.10563/. Let’s get these ideas brewing.

 

Throw that into the Member Only discussion over here https://www.s4me.info/threads/makin...spite-currently-pouring-from-the-media.10563/. Let’s get these ideas brewing.

 

It’s amazing how the journalist was so on the side of Sharpe he allowed that opinion piece to be presented as fact and in the token “balance” bit with Dr Charles Shepherd he was presented entirely with skepticism. Note the little dig at this “silly biased dr with ME” not wanting to accept the so called wealth of psychological evidence but being convinced by the inadequate amount in the neurological field, implied because he found it more acceptable. Dr shepherd doesn’t have Cinderella slipper syndrome but the BPS lot do. I’m not sure if michael Sharpe was behind that amazing distortion of reality or the journalist by this stage was so taken with the “Sharpe & the establishment battle batty patients” story that that was a little “insightful” snark of his own. I can’t imagine any other illness where the head dr of the main patient charity, far more knowledgeable about the research field and base than Sharpe, was treated as an unreliable witness.

 

Thanks! I would love too, but I seem not to have the rights to the thread. I’m rather new here.

Did it! Thanks

 

My take - I now need to add both the excellent photos by @theJOYdecision and a link to @observer - perhaps a retweet with those added details

Stand back and wait to see.

I did also fire off an email last night (including the article) to my MP, 2 other MPs in the County who attended our #MillionsMissing event, Carol Monaghan and Darren Jones (both Science & Technology Committee) with copies to friends who are constituents of theirs (except CM).

https://twitter.com/user/status/1155761613057777664

 

https://twitter.com/user/status/1155768826975391744

 

hmm..... they've just closed nominations for the John Maddox prize
https://senseaboutscience.org/activities/maddox-nominations/

ring any bells?
https://www.nature.com/news/courage-for-sound-science-wins-john-maddox-prize-1.11760

 

Yay that’s awesome! I made another more serious one. Didn’t know how to emphasis the humour without getting wordy so worded it for impact instead.
[EDIT] link to one place where Ron Davis criticises the psychosomatic model for ME as barbaric and malpractice. Quote is in the audio not in the written summary. https://www.rnz.co.nz/national/prog...ue-syndrome-blood-test-new-hope-for-sufferers
There might be better sources if people fine NZ source less compelling. I believe he’s used similar language in Australia?

 

Personally, I think that use of words like 'barbaric', unless fully and clearly justified (which I think would be difficult), is likely to be counter-productive.

 

Seems Charles Shepherd really tried.



Michael Sharpe, one of the authors of the widely discredited PACE trial (https://www.meassociation.org.uk/…/me-awareness-the-pace-t…/) has expressed his thoughts on ME/CFS and internet activism in The Guardian. His comments imply that individuals with ME are discouraging researchers from pursuing work in the field.

The piece also has input from Dr Charles Shepherd, MEA Chief Medical Advisor: “He dismisses the notion of an abusive campaign as a story that has been overplayed in the media and which concerns “a tiny, tiny, tiny number of people sending emails to one of the handful of researchers in one particular area of research”.

“There are 250,000 people with this illness,” he says. “A lot of them feel very cross and angry about the way they have been treated by doctors. I mean, the numbers were probably 10 or 20 people who were accused of sending harassing or abusive emails.”

Dr Shepherd adds that, as usual, the quotes were selected by the journalist involved from a very wide ranging interview covering the history of ME/CES, research into ME/CFS, and the management of ME/CFS. Most of interview relating to significant and recent advances in biomedical research, including the the work of the ME Biobank and research into defective energy production at a cellular level, were omitted. There was also, as usual, no opportunity for Dr Shepherd to check or comment on the content or accuracy of this input before the article was printed.

The story highlights the ongoing conflict between patients with ME/CFS and those involved with the PACE trial, and clearly demonstrates the need for ongoing biomedical research into the condition. We understand that this is an emotive area for many, and demonstrates just how far we still have to go in informing the medical field and general public about the true nature of M.E.

https://www.theguardian.com/…/me-perils-internet-activism-m…

#MECFS #PWME #MEResearch #PACETrial

 

It's the UK media "silly season".

I could smell this article and predict where it would be published. It's a sad indictment of where we vulnerable, disabled patients stand with The Guardian / Observer newspaper in the UK.

https://en.wikipedia.org/wiki/Silly_season

"the Times is often violent, unfair, fallacious, inconsistent, intentionally unmeaning, even positively blundering, but it is very seldom merely silly. ... In the dead of autumn, when the second and third rate hands are on, we sink from nonsense written with a purpose to nonsense written because the writer must write either nonsense or nothing."

"To retain (and attract) subscribers, newspapers would print attention-grabbing headlines and articles to boost sales, often to do with minor moral panics or child abductions"

"In Spain the term serpiente de verano ("summer snake") is often used, not for the season, but for the news items. The term is a reference to the Loch Ness Monster and similar creatures, who are reputed to get more headlines in summer."

 

Comments can be made on their Facebook page.

 

@ukxmrv With that description of silly season, it is silly season year round and has been for some time.