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

Emails between Tovey and the authors were accessed under Norwegian transparency law and the same can be done for communications between the new editor and and the authors.

If Cochrane backtrack under pressure Sharpe will think he’s won the fight but he won’t have, he will just have delayed the inevitable in some areas. Does he think thousands of patients are going to give up? When the arguements and the evidence doesn’t support CBT and GET and there is evidence of shenanigans? I think he knows, because he isn’t stupid, that he’s ultimately not going to win the arguements that count by his press strategy it’s just desperation. The problems with the research are increasingly being understood by people who matter.

I also think Sharpe’s a convenient front person for others who are hiding behind him. They’re probably hoping all shit hitting the fan will land on him.

I don’t Know how this will go, and I’m expecting there to be quite a fight ahead yet, tbh, but it could be that Sharpe is just heaping burning coals on his own head.

I wonder if/how much the high ups at Oxford understand about his work and the problems with it or the academics in the other medical faculties. It might be ok at present to have him in the press saying these things but perhaps they will see risks to it too. Oxford has an international reputation to look after that’s bigger than Sharpe, or those who support him ETA to them.

All speculation of course.

 

The problem is that the methodology goes wider and affects many more conditions and careers.
When it comes to eminence, the pace of change in UK is slower than a snail's .

 

https://twitter.com/user/status/1155909816080093185

Code:

https://twitter.com/ElahFeder/status/1155909816080093185

 

Has M Sharpe responded to this tweet?

ETA: thanks @ladycatlover - see below.

 

<blockquote class="twitter-tweet"><p lang="en" dir="ltr">Interesting comment. Which criticisms were valid in your expert view?</p>&mdash; michael sharpe (@profmsharpe) <a href="https://twitter.com/user/status/1156105083878354946

 

Wow, snark much Prof?

Good to see he is maintaining the level of professionalism on social media that he himself wishes to receive.

What a flipping hypocrite (and I don't really mean flipping!)

edited for spelling

 

I am probably naive, but if the new editor was involved in the process of the review (@Trish ‘s post) then, hopefully, she has the..... strength ..... to stick by that decision!

 

What report is this please? And why is MS worried about it?

 

This is the Oxford-Brookes report. You'll immediately see why MS might have taken a fright when you check it out

https://www.s4me.info/threads/me-as...patient-survey-on-cbt-and-get-in-me-cfs.8902/

 

Oh thank you

 

https://twitter.com/user/status/1156223083281182720

 

Wow... The vanity of MS is remarkable to behold. And his ability to indoctrinate naive journalists with a ready-made narrative (his preferred narrative) is both disturbing and uncanny. Don’t they come away from him with the sinister feeling they’ve been manipulated?

He missed out “how they answer questionnaires, essentially how much response bias we can introduce.”

 

It is a bit of a sticky situation for her. She knows the issues since Tovey made them clear (I had forgotten that). But she was specially selected to replace him when the people hiring her were very unhappy with Tovey for his plucking up the courage to buck the system. Perhaps they may try for an intermediary position that pleases no-one.

One thing I expect, they will continue to delay for as long as they can get away with thereby not having to take any stand at all.

Very sad that this is how people behave when faced with valid criticism.

 

I don't want to know what lack of courage looks like, then. The peer review was brutal and still it was published and stands to this day, Tovey completely caved despite acknowledging the flaws. Is Cochrane purely about politics or what? It doesn't look at all like a serious organisation, or at least patient safety seems to be nonexistent in their priorities.

 

I have no great knowledge on the subject but from what I've seen over time my opinion is that all organisations at their inception are foremost about protecting the organisation. Some can rise above being merely or only this. That is a matter of leadership. (And in my opinion is lacking at Cochrane).

That said it is no small thing to buck the system even if it takes some time. There is no up side for the person and there can be quite a significant downside. It may be that there was a calculus of sorts by Tovey (not saying there certainly was) that he could afford to pay the price that would be elicited when he finally did what he thought (and may have thought all along or for some time) was the right thing to do.

 

That's providing they are not meeting for coffee or having chats over the phone.

Also at the levels of deceptiveness that certain people operate at they don't even need to meet in person or communicate directly to influence things. They are capable of doing so with degrees of separation and almost make the person making such decisions think they have arrived at it purely off their own backs.

It only takes the odd networking cocktail meet or dinner party for someone to bring up such matters as "internet activism fake news etc" and routes to outcomes can easily be manipulated.

One has to also wonder what factors influenced the appointment of the new Cochrane editor, and what networking went on to make sure she was the suitable person.

 

Thanks to Shepherd for trying... I hope I wasn't unfairly critical of the bits that featured him. I'm critical of everything, and did try to make clear that I thought he had an impossible task.

Also good of MEA to post his views on this promptly.

Good luck with any complaint - it seems likely that the Guardian is full of bigots who will be keen to try to twist your words.

 

Personally i'm not sure biomed researchers coming out & saying how supportive we are of them is particularly helpful - unless it's Fluge & Mella saying how thrilled we all were with their latest negative Rituximab study indicating previous positive results were placebo!

They're spinning patients/activists as people who only like the results they 'want' (ie those suggesting organic aetiology) & attack those apparently producing results they don't like. And since many patients (inc myself before I found S4) & activists do, it seems to me, tend to take an unhelpfully uninformed & uncritical view of quite a lot of less than highest quality biomed research, then biomedical researchers getting no criticism doesn't really counter the erroneous message of the article. I think a bunch of biomed researchers coming out & saying 'patients love us' will simply be seen to prove their point.

Also, just the act of responding to the 'patients don't want to accept psych' meme, it also distracts from the real point - which is that regardless of what patients do or do not want to be true, regardless of whether we prefer a biomed explanation or not, & regardless of whether their purported reasons for that are accurate....

The real point is that eminent scientists & academics say their research is methodologically so flawed as to make it worthless, therefore all this prevarication about anything else is just the BPS lot saying 'don't look at that look at this instead', and responding to that by actually arguing about what they want us to argue about is just allowing them to continue to control the narrative.

Discussing what they want us to discuss is just taking the bait imo & falling for the manipulative tactics.

ETA … eg When someone is 30 mins late to meet yout & you challenge them about it.... when they respond that you are anal about time keeping... the worst thing you can do is get into a discussion of whether or not you are anal about time keeping... because the point is whether or not they are late & they have just nicely sidestepped it.

 

Tbh I was disappointed by mea response


No one asks Dr Charles Shepherd to go it alone on our behalf. Other illness charities lead and provide ways for their patients to lobby and call for change, mea just wants it to be left to dr s behind the scenes.


Someone on mea proposed someone providing a template letter of complaint so it would be manageable for a significant number to engage in a complaint to show a community stand against this awful without reply right Type of journalism. Obviously it wasn’t taken up.

Mea then posted to patients that they should take heart about the slow but steady biomedical research,( given the imo appalling state of U.K. research past decade, I feel that not the stance mea should take especially on the uk research picture). Whilst that can be seen as a caring response to a wounding week it’s also a pacifying one and I feel that for all the positive work mea Do, it’s undone by their seeming to want the patient community to stay quiet in their place whilst they , or he, plod(s) on behind scenes working with establishment which I think is a very timid, unhelpful and unproductive way for a national charity who could be leading campaigns to act.