David Tuller - Trial By Error: The Shopping Bag Study; and New York State’s Revamped Website

yes, I've seen the health anxiety study. Before that, Daniels did a study with sample of one that found that, in that patient, modified CBT that included treatment for health anxiety produced desired effects. From this sample, she decided that the combination of CBT plus that extra help for health anxiety was an effective treatment.

 

Unless we gave that wonderfulnralent of being shroedinger' s patients- capable of being in both categories simultaneously

 

I think the numbers are nested. ie they have included the clinically anxious within the group that is subclinically anxious - "within the subclinical range of health anxiety", so everyone who is that level or more is in the bigger group.

I agree of course that their language here is not particularly self-evident.

 

before the Shopping Bag Treatment researchers can gushingly imply that health anxiety is causing ME, & can be cured by CBT ...

they would need to consider other factors that relate to their concept of 'health anxiety':
- increased catecholamines (eg adrenalin) caused by the high rate of cardiovascular issues / low blood volume / POTS / fainting etc
- whether the participants understand how their catecholamines affect their anxiety levels (ie will change subjective perception)
- the decades of systemic medical abuse, neglect and stigmatisation, causing emotional trauma and anxiety
- concern that other genuine harmful comorbidities have been trivialised/dismissed, and will not be properly investigated
- limited access to safe housing, financial support, practical support and public respect, causing constant personal distress

i'm not sure where they would find a comparison population, who have suffered so much neglect abuse stigmatisation and suffering, and also have similar high rates of catecholamines (measured at multiple points before during & after the study).

and, of course, the researchers should prove that participants actually have ME/cfs, using CCC or ICC criteria.
and emphasise the extreme difference between mild ME and severe ME.



[edited to add] in any case, pwME have rapid fatigability / unpredictable changes in their capacity to safely do minor activities - and overstepping their limits can have SEVERE consequences (eg days/weeks/months of bedbound and extreme pain).

so it is RATIONAL for pwME to closely observe the changes in their physical capacity. not 'anxious', but a rational observation of a critical factor.

 

Given that M Sharpe has now come out on twitter and admitted that they were studying chronic fatigue as opposed to ME should not all future research in this area clearly differentiate between the two and flatly state that ME is not being researched (or alternatively clearly state that they are including ME and then indicate use of proper criteria)?

 

That doesn't sound like news to me. They've always said that entry into PACE required that patients fulfil Oxford criteria, but that then that they also looked at results for a sub-group who also fulfilled (their version on) the London crtieria for ME.

There was this quote from Sharpe in 2011:

Prof Michael Sharpe, of the University of Oxford, said: "The concepts of CFS and ME have been conflated as CFS/ME. That may be right but it may be a bit like an apple/banana - we need to be clearer what we are talking about."

http://www.bbc.co.uk/news/health-14883651

When there's so much uncertainty about how both CFS and ME are to be defined it's easy for discussions about this to go around in circles and distract from the clearer problems with PACE imo.

 

OK for me that begs the question what is cfs? Is it a real disease then?

ETA: also, this brings up a problem of terminology for the whole community in that many of us think of our illness in terms of ME and many of the validating studies are being done in the US with the term cfs. So am wondering where this leaves us.
Although I think this takes us off the main theme of the thread perhaps?

 

@Esther12

I wasn't aware (or didn't remember) that this distinction was made back in 2011. It puts the tweets in a different context then.

This makes me wonder then why did they bother with the subset of ME under different criteria? Was it so they could point to that subset responding equally well to their interventions? If so that didn't go according to plan.

Again, I'm one of those people who think that we need to drop the name cfs. Sadly all the good work being done in the US falls under this name.

If we get what we hope for, a solid reliable biomarker and a treatment protocol to go with then with a different name we can distance ourselves entirely from any further cfs research while continuing to fight against the use of MUS as part of the psychiatric domain. Though I appreciate that there may be other ways to come to that point.

 

Split the baby then divide and conquer is my bet.

 

So are you saying he believes CFS is the condition perpetuated by unhelpful illness beliefs, whereby the person needs to overcome their fear of exercise? And that he believes ME to be and "invented" diagnosis? I'd like to understand this better, in the sense of where MS is coming from.

 

That incredibly long URL doesn't work for me. I just get "Your session has timed out. Please go back to the article page and click the PDF link again".

 

Still no joy. Redirects to different but also very long URL. Same error. Tried both Chrome and IE.