Still to open Exploring Worry in CFS/ME, King's College London

Study Overview

Brief Summary

This study will be building on the findings of Kalfas et al 2022 paper exploring the prevalence of generalised worry in patients with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) before and after Cognitive Behavioural Therapy (CBT). The research was conducted in South London and Maudsley NHS Foundation Trust's (SLaM) Persistent Physical Symptoms Research and Treatment Unit. Previous research has indicated a bidirectional relationship between fatigue and worry (Kalfas et al., 2022); the findings of this paper suggest both that many ME/CFS patients experience comorbid problematic generalised worry and that there is a positive association between severity of worry and levels of fatigue (Kalfas et al, 2022). It appears that CBT for ME/CFS indirectly treats worry, however effect sizes are small to moderate, and treatment outcomes may improve if CBT treatments incorporate strategies that target generalised worry (Kalfas et al 2022). The aims of this project are to further explore worry in this group of patients through qualitative methods.

https://clinicaltrials.gov/study/NCT06011135

 

Oh FGS just stop, please stop, aaarrghhhhh. Enough of the 'studies' on how people with ME worry or are anxious etc etc etc ad nauseum and how 'further research is needed' to continue 'studying' this pointless BS. /meltdown

 

They could have a study into how many patients think all these studies are worthless bs that should never be funded.

 

Alternatively, a study into the researchers who are so worried about the worry they feel a compulsion to repeatedly research it.

 

They gazed into the worry so long, and the worry gazed back at them

 

They’ve missed out the part / mediator where the worry starts when the realise that not only is there not a fix but that they are being dumped off to the part of ‘medicine’ that doesn’t care snd indeed spends acres of money and time and misinformation inferring what’s black is now white re your personality and who you are and your history of what you’ve done in life and now you are shoved into a dystopian nightmare.

how on Earth they gif people to fill this out without either tricking them (ethics issues) or bring very selective with the sample or leading them to water in what they said I don’t know. I worry so much for how the world has allowed the vulnerable to be targeted so badly by ‘different intentions claimed or not due to kidding themselves’ people who aren’t acting in their best interests due to dysfunctional outdated ideological beliefs about women and chronically ill (except who knows how many it’s chronic due to being barred from medicine and investigations others might have had)

 

Jaw dropping grasping at straws.

It's a qualitative study so perhaps they will get a full dose of:

'FFS of course I'm a tad worried as I now cannot stand up/think straight/etc and I am now unable to work. In part because of the fabulous research from here in recent years, there are no effective treatments, so I have now lost my job, career, income and I have bills, mortgage and family to support but, hey, I'm kinda defuddled as to why you don't get that I might be a teesy weesy bit worried and upset, ya know, it's only like, my whole life feels like its been flushed down the loo.......' ahem

Words fail really.

 

The latest selective "review" by Knoop about CBT "helping" got a lot of press and kudos. They keep doing this because they are rewarded for it. It doesn't remove blame from the producers of this pseudoscience, but it's high demand by medicine that is driving this. They are meeting a need, and that need is endless. The need to blame anything but medicine for medicine's failures and inadequacies, to reassign blame anywhere but where it falls.

These people are like drug dealers. The drugs are in high demand. It's bad for everyone, but the demand never ends, so the supply keeps on.

 

My worry levels go through the roof when I see the words King's College London.

 

And that people like union reps or bosses or friends or family when someone is needing functional help to e.g. deal with the situation regarding their job, and should get the basic support others have - instead get gaslit and patronised. And the more frustrated they get that some idiot is instead of explaining or supporting on a meeting is spouting the nonsense misogyny spiel 'stories' from the fight and flight - because after all that is nice and easy for them to understand but sounds har enough they think they've learned new 'expertise' (hubris) even when someone with a psychology degree tries to tell them they are wrong and inaccurate on their stories and even points them to the proper science and leads them through those books and theories (but they don't want to hear because their hubris has gone so bonkers) - the more said individuals pretend the issue is that. WHen they caused it, aren't doing their job but cherry-picking something they'd prefer to do which is against the interests of the person entitled to real help and instead undermines them, stresses them by the source of support instead invalidating and refusing to speak to them like an adult on a topic that the conversation is supposed to be on, and are actively trying to wind you up by withholding leaving you stuffed.

That is what all this nonsense causes and encourages. And they know it because it is what is intended, they've sought it out because that's how they 'view' these people. It isn't 'help' it is misogyny. It's advertising and branding of a bigotry about these people. It's encouraging the women and chronically ill to be abandoned and seen as silly worriers with no real problems compared to 'others who have real issues', their rights removed and then talked down to and told they are something they are not whilst they stand there with their jaw dropping in horror that as very sane, very clever people who made sure they were prepared for these moments someone is kidding themselves that rather than wrecking your life by being your worst enemy more than those who you are meeting instead of your ally. Normally because they have their own 'issues' I have found. And yes said people do pick on the vulnerable - they don't I'm not sure realise they are doing it but its the people who have little support to stand up for them and tell those people to shove off - and I suspect its about it giving them a kick that in their mind someone is then worse off than them.

Twisting people's stories of 'worry' in order to encourage this bigotry is vomit-inducing abuse-not-help and bystanders need to begin standing up and telling these people who pretendg 'its good intentions, its help' to stop hurting people, stop kidding themselves and that everyone sees through them.

 

Chalder is regarded as one of their experts

Our experts - South London and Maudsley (slam.nhs.uk)

 

This idea about 'worrying' has been used before as a reason why GET/CBT 'might' not work.

Tackling fears about exercise is important for ME treatment, analysis indicates

Tackling fears about exercise is important for ME treatment, analysis indicates | The BMJ