Trisha Greenhalgh on ME/CFS and Long Covid

The sad thing is that some biomedical ME researchers have seen this and don't understand the hostility as they are not aware of all the details and history.........

 

And I would strongly suspect that she would be perfectly happy if the same quantity of comments were agreeing with her views, she certainly wouldn't be blocking people then. So it comes back to her denial of our lived experience, because it's different to her beliefs, the only way that she can reconcile the fact that there are so many comments trying to explain how she is wrong is to turn it into "abuse" of her, so then she can be "justified" in blocking so many of us.

 

From what I've seen, tweets classed as "harassment" or "abuse" by those in the BPS cabal are merely pointing out that the Emperor is wearing no clothes.

She is making the allegation of 'trolling' because she is unable to justify her beliefs in a logical argument. After being cosseted in their echo chambers for so long, they're clearly not capable or used to having their beliefs challenged.

 

I think there are occasionally genuinely abusive ones (therefore it's not a good look for us to claim that it never happens), but yeah.

 

I normally do prefer like @Esther12 a cautious approach to advocacy on all platforms and shy away from the militant shouty approach (although I believe that has its place)

I think in this case I would suggest we still approach this with caution (which I think we already are doing) but recognise also that Twitter is a platform for influencing journalists, politicians and celebrities in the main (not the general public directly....too few active users to be any use there in terms of sustainable comms).

so when we are talking about tone we also need to think about robustly defending misinformation but also providing content i.e content that politicians and journalists recognise and can use to further our argument. Countering untruths is one thing but perhaps we should be creating our own headlines and play them at their own game?

 

I find your vicious and unprovoked attack to be unwarranted and insulting. To prevent me having to suffer any further harrassment and abuse I will not be engaging with you further. Please also be aware that should you send me any death threats, I will report them to the police immediately. Zero tolerance.

 

I don't mean to be bitter or twisted here (it comes naturally!). I think Maureen Hanson's son is ill with ME and you can see how she's attempted to understand the disease [proteomics paper*]. If these people (TG+) applied the "you & yours test", my neighbour a casualty doctor refers to it, would they seriously promote a couple of laps around the block and some positive thinking - oh and evaluate it with a questionnaire? I think there are some serious double standards going on here - or they just don't have a clue.



*In-Depth Analysis of the Plasma Proteome in ME/CFS Exposes Disrupted Ephrin-Eph and Immune System Signaling
https://www.s4me.info/threads/in-de...une-system-signaling-2021-hanson-et-al.18886/

 

By the way, it seems the long COVID study can be undertaken by those not on Twitter. The second researcher tweeted her email address for anyone wanting to get involved who couldn't get on Twitter: Michelle.vanVelthoven@phc.ox.ac.uk

 

Sorry. It's the one TG tweeted about experiences of the long COVID recovery website.

 

We're not especially in need of "more caution", but taking the initiative with well reasoned arguments because in reality we're in a strong position. The BPS people are reduced to personal anecdotes of benefit, TG just found out things are a little more complicated than "a small vocal minority of unreasonable extremists" (not her words, but roughly how BPS people used to describe patients critical of their work).

And people have mostly done this. But what we're having difficulty with is not having an easy time reaching a broader audience and that we're sick and well reasoned arguments is hard work.

What makes us strong at the moment is that NICE just said GET studies are junk science and GET shouldn't be recommended due to concerns of harm.

 

Start of a great Twitter thread.

Code:

https://twitter.com/GnomesChainey/status/1356058364938096641

https://twitter.com/user/status/1356058364938096641

 

So to find out you don't need to be on twitter to sign up you need to see this person's tweet?

I feel a comedy skit coming on . . .

 

You just need to be on a forum of activists who re-post all the interesting tweets on it.

 

I think it’s trendier to call yourself an activist nowadays

Yes it isn't a great medium but a lot of influencing egos reside there spouting off and presumably listening sometimes. The BPS advocates certainly deploy the illusory truth effect (seems it’s the only tool in their limited toolbox).

 

I think there's interesting difference, though, between the way the BPS crew use Twitter, and the way ME and LC advocates (sorry, activists) do.

The former reveal their biases and complain about being victimised.

The latter respond, on the whole, by arguing their responses very cogently. Some do it so well (see #193 above) that they galvanise other sick people, helping them to articulate their own arguments and encouraging them to recruit fellow sufferers.

I think the BPSers are doing a pretty fair job of building an effective movement against themselves, to be honest.

ETA: changed 'them' to 'themselves' in final sentence.

 

Please tell me what advances ME has received because the patients behaved sweetly to BPS? ME will never get free of BPS abusers by tiptoeing around. NICE spit out the BPS research. Proclaim it far and wide. Don't give BPS a chance to catch their breath. Rub their face in it. Get aggressive. Stand up to BPS bullies. Stand up to BPS manipulation. Mock the BPS research. Turn the BPS crowd into a laughing stock. Give them a taste of stigma, we ate if for decades now it's their turn to eat. HIV/AIDS activists were aggressive, ME need more aggression not less.