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

Andy

Andy

Retired committee member
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
 
Newsflash: People with life devastating untreatable stigmatised mistreated disease are unhappy and concerned about it and the serious effects on their lives.

Read all about it!

Tomorrow: Dog bites man, while bears shit in the woods.

Next week: Humans Need Oxygen, Water, And Food! The Scandalous Truth They Tried To Hide From You!
 
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.
Click to expand...
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. :yuck::dead::ill::wtf::banghead::eek::emoji_face_palm::emoji_scream: /meltdown
 
Sean said:
Newsflash: People with life devastating untreatable stigmatised mistreated disease are unhappy and concerned about it and the serious effects on their lives.

Read all about it!

Tomorrow: Dog bites man, while bears shit in the woods.

Next week: Humans Need Oxygen, Water, And Food! The Scandalous Truth They Tried To Hide From You!
Click to expand...


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)
 
Andy said:
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
Click to expand...

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.
 
Inclusion Criteria:
  • have a diagnosis of ME/CFS according to NICE criteria;
  • have agreed to CBT for ME/CFS following their initial assessment;
  • are/were struggling with comorbid generalised worry as determined by a score of 45 or above on the Penn State Worry Questionnaire (collected routinely with all patients referred to the service).
  • Informed consent to taking part in the study
Click to expand...

A purposeful sample of patients will be recruited from SLaM's Persistent Physical Symptoms Research and Treatment Unit.
Click to expand...
A purposeful sample. I guess that is true; I assume that in this case the purpose is to support beliefs that worry not only makes symptoms worse but is fundamentally causal, and that patients like and appreciate CBT.

And, for goodness sake, what researcher sets out to recruit a sample for their study that is not 'purposeful'? Antonyms of purposeful are 'purposeless', 'aimless', reckless'. I think what they actually mean to say is 'selective' - but perhaps that makes it too clear that this is a project to produce propaganda, not science.

I feel that we have seen other projects recently with a same aim of working out how to market, how to tweak a therapeutic offering to make it more appreciated by the recipients. It feels like this study is a response to a COFFI strategic bulletpoint, or several.
 
Trish said:
The endless need to keep publishing and to keep providing data for postgrad students to use for their 'research'. What a waste of everyone's time and money and so unethical.
Click to expand...
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.
 
Joan Crawford said:
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.
Click to expand...

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.
 
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
Reducing worry that exercise or activity will worsen symptoms of chronic fatigue syndrome (myalgic encephalomyelitis or ME) is important for the success of cognitive behavioural therapy or graded exercise therapy in reducing fatigue and improving physical function, concludes a new analysis of data from the PACE trial, reported in the Lancet Psychiatry.1
Click to expand...
Tackling fears about exercise is important for ME treatment, analysis indicates | The BMJ
 
You must log in or register to reply here.
Back
Top Bottom