(Not a recommendation) Bath University, Volunteer for research investigating Chronic Fatigue Syndrome

Am I correct in thinking that “they” are researching false illness beliefs and catastrophising (yet again)?

Why are they SO stubborn and tenacious with this belief? It’s money wasted time after time in order to ... what? It’s already absolutely clear that this patient group desperately want to live life outside of the same four walls.

If I could go shopping and carry shopping bags I’d be delighted, thrilled to bits, excited and hopeful that I could do it again and again.

 

What about ME patients who are in their 70s? The physical capacity of a 90 year old? I have to say even in her mid to late 80s my Mum couldn't half rush around, carrying a bag or not! I'll reach 70 at the end of August...

 

The problem with these studies is that they are based on a convenience sample, and given that most people know they're talking to a psychologist etc, it biases towards people who may believe in the hypothesis and may explicitly or implicitly bias their responses to favor the hypothesis.

Conversely, these studies could in principle be captured by a group who has ulterior motives and wants to skew the hypothesis into the opposite direction. *cough*
Carrying a bag of shopping? How hard can it be?

Tip for anyone answering questionnaires at multiple time periods - take a picture of your previous answers on your phone for comparison and then use these as a basis for answering those questions.

 

I find it fascinating that they think heart rate monitoring could be useful, but apparently only during face-to-face therapy sessions.

 

That'll rule nearly all of us out then.

 

Probably so they can say that high heart rate indicates undue worry and concern about the task. It won't be used to indicate that getting there and doing the activity are more difficult for ME folk, OH NO, it will be used to say we get stressed by being asked to exert ourselves, and THAT is our problem!!

 

Trial By Error: The Shopping Bag Study; and New York State’s Revamped Website
http://www.virology.ws/2018/04/24/t...g-study-and-new-york-states-revamped-website/

Thread: https://www.s4me.info/threads/david...dy-and-new-york-states-revamped-website.3751/

 

"carrying a shopping bag. This will be recorded and you will be asked to watch this back and answer some questions about it"



eta: just wanted to say thank-you to Esther Crawley........I have been laughing hysterically for several minutes. Just the thought of it has indeed 'lifted my mood'.

eta: it's not her but no doubt she was the inspiration

 

I do wish they had used a bin bag instead, would have been more appropriate.

 

I wouldn't mind volunteering for this as long as they allowed me to film them filming me and when it was over we could sit down and watch my film and they could describe their thoughts and feelings and emotions on having wasted their careers.

 

@dave30th, you're such a party pooper

 

Anyone know who is funding this shopping folly?

 

Amazon Fresh

 

I have to wonder what the hypothesis they are testing is. Is this required to be stated in a clinical trial?
I'll be surprised if it makes any sense as we all would but i would like to know.

This reminds me of a change.org petition a while back (paraphrasing) its common to name airports after former Canadian Prime Ministers but unusual to name a former Prime Minister after an airport. He deserves this unique honour...

I am betting you would hear loads of alternative facts about how they are not, replete with photographic evidence (i mean justification arguments)

 

Is the prospective new treatment Graded Shopping Therapy? You start off on the first aisle at Waitrose -I don't suppose they shop at Tesco -and buy the end of the course they'll have you running up and down all of them and making it through check out. I can almost remember what it was like to do such things.

 

If only Chris Ponting were a member of this forum. It would be interesting to get his take on the relevance of this study.

They simply don' t get PEM do they?
Heart rate monitors for the following 3 days may be more illuminating ...

 

possibly related to this type of thing?

"Dougherty v. Indiana Bell Telephone Co., 440 F.3d 910, 917
(7th Cir.2006) (... surveillance videotape showed the
claimant engaging in normal, everyday activities, such as
driving his car and hauling shopping bags)."

--- https://www.indianalongtermdisabili...bility-insurers-can-use-to-deny-benefits.html

 

People honestly think you have to be a vegetable to need help. It's sickening.

 

Well, there's this as a clue: https://researchportal.bath.ac.uk/en/persons/jo-daniels