Cochrane ME/CFS GET review temporarily withdrawn

How could we deal better with the PR issue? The BPSers have the benefit of long time control of the narrative, they have people of influence ( or at least important sounding titles) that they can wheel out; they have a lot of doctors on side and doctors have a reputation of being “ a good thing”.

We have patients and add one word like “ militant”, and we are ignored. What we do have is the science. Maybe people just turn off when they read that. Is there a way we can make it more accessible, not just to knowledgeable patients but to those who are not so immersed in our story?

It seems that people only really engage with the science when they or a family member develop the disease. How can we change this? I post ME news on fb deliberately. I know there will be little response.

How can we make the issue about science?

Ok- wild idea but we need to start somewhere - is there any mechanism for putting in a formal complaint about the Maddox prize being won by Wessely? I am not expecting that we will get the decision overturned ( but I can always dream) but the debate would have to be about science and his scientific credentials.

Or the ethics issue- any mileage in that? Have these studies like Magenta been correctly approved. Unethical and children don’t sit well together.

How do we turn the debate to science?

 

We would need our own PR group that can proactively get our message out there, so that it is no longer the BPS narrative that dominates the press as it usually does.

Maybe a job for @dave30th?

 

They managed to once again turn a story about scandalous scientific problems affecting millions into a story about the bad character of some anonymous critics. I think that's a win for them.

 

Knowing the internet's predilection for cuddly kittens my only surprise is that Blakemore has not sought to garner the last drop of public sympathy by showing some old photos of his.

 

I think they won the battle but are Losing the war. But they’re loosing slowly because they’re so determined not to and have automatic respect and authority we don’t as well as access to the press and SMC. I think the main reason we are loosing each battle is because we have less powerful people on our side to speak out to counter their “vexatious militant patients” narrative. We are much more fortunate than we were because of Jonathan Edwards and David Tuller speaking out . William weir and countess marrr, just two people, in the past tried to challenge the wessely Maddox award but he got a long letter of supporters, including Stephen Holgate in his defence. The press, if they’re led foremost by the SMC, won’t even interview our side though and we don’t have resources for PR . We don’t generally have medic establishment on our side , they’re on pace trials and GET so the press will lean to that being truth. If nhs drs were demanding more cash and better options for their CFS patients who aren’t improving on CBT it would be a different story but they aren’t
Saying that The millions missing , unrest stuff was useful for visibility and is our side rising up.

They can only keep swatting down these unwanted developments so long though, biomedical research will start to come through soon but people like wessely probably only desperately care to maintain status quo whilst they’re still working.

 

I'm not so sure it's working out for them this time though.

The deep trust people have in Cochrane, that they before could hide behind - might now be working to their disadvantage. People still trust Cochrane to focus on the science. So it's more obvious that it's a smear campaigne, and easier to notice the lack of actual arguments.

edit: Especially with Toveys clear statement: “This not about patient pressure,”

Also, the way Clara Grenade is talking about and answering patients on twitter are not doing them any favours.

 

Don't you know about his experiments on kittens, in which he sewed up their eyelids and then killed them?

 

@Cinders66
I didn’t know Holgate signed a letter of support for Wessely in the Maddox prize award. Interesting to know these things.
And the more support someone has given someone, say Wessely, then the less likely they are to move to the group opposing, because their judgement is shown to be flawed. We have a big hill to climb with public relations.

I agree that Millions Missing and Unrest have helped but more at the popular level.

When/if we get our H of C debate, we have the science.

 

We can hope. Proper accountability is what has been missing from this story.

 

"As long as you take full accountability when things go wrong. You can’t have authority without accountability." So where is the accountability for the doctors who are using CBT/GET on patients? Where is the reporting infrastructure for harms? In what way can legal action be taken against them when the laws are written to favour medical privilege? How can the people pushing harmful and unproven therapies be made accountable?

 

This is something I am hoping for.

 

I have been saying this for over six years, and was working toward analysing this issue when I wound up in hospital for two months and went into what is now a six year decline. We really need our own site for information specifically for journalists to use, including links to possible human interest stories.

 

Anyone is saving Clare G.'s tweets? I cant't believe how arrogant and ignorant a medical doctor with this expertise and in this position can be!

Could be a rich source of quotations in the category of "own goals" though.

Have to take a forum break now - just leave this one here.

https://twitter.com/user/status/1052912889655386112

 

She's been like this throughout her career. UK doctors seem to love her for it.

I'm amazed by her tweets. I'd be fascinated to be inside her mind for an afternoon. What does she think of herself?

 

Clare Gerada:

Errrr...hello? Exactly who do you think takes full accountability when things go wrong?

The doctor who blithely goes on his/her way earning a pretty good living and giving patients dodgy advice, while hiding behind the skirts of NICE & the likes of Cochrane

Or the patient languishing on benefits - benefits that are probably lower than the income tax deductions of their previous salaries. Yes, they have a lot of free time, but not the health or stamina or do anything with it; assuming they can afford to.

Patients have paid in full for the lack of accountability of doctors.

If I were a doctor I would be ashamed that this lady was representing my profession. She clearly has no understanding of what life is really like for her patients.

Edited to make it clear I was quoting Clare Gerada & not @Daisymay!

 

The reason I don't have a twitter account is because of what I would say to Clare Geralda.

She is trying to drag the conversation onto mud-slinging territory where she and her ilk are most comfortable.

Fortunately she is making as big an ass of herself as Michael Sharpe.

The mainstream press is ignoring the SMC and they haven't had a look-in on ME articles in quite a while. So this is their response - to get their message across through a stooge at Reuters. They don't care whose names they tarnish in their efforts to maintain influence - first Cochrane, now Reuters. I hope it doesn't take Reuters as long as it took Cochrane to realise what's going on and tell them to shove it. Perhaps Reuters should be the next to feel the pressure of militant patient activism, sorry, I mean to receive a few emails. Not just from ME sufferers, but perhaps a few from real journalists or scientists / researchers might help. @dave30th ?

 

By the way, if anyone can help me get the unsavoury image of Sir Simon whispering into Clare's ear whilst she tweets out of my mind I would be most grateful. It came unbidden, and now I can't get rid of it.

 

If anyone could prevent you from putting dirty images in our minds, it would be great.

 

@Trish you give great contributions to the debate. Thank you.

https://twitter.com/user/status/1052847781839130626

https://twitter.com/user/status/1052913425586810882

https://twitter.com/user/status/1052915662937452545