@0ecd8d1a @4183a04c @3a447f2a We could do better by assessing how effectively people are able to pace and what kinds of support actually work, and quantifying how effective it is.  An in-home robot could observe actual activity which could be cross-referenced against symptom and medication data to get a more accurate picture of patients' actual capacity.

Yet pacing, the one tool patients have extensively employed, remains largely unstudied.

#StopRestPace 

 @bdabbff7 @0ecd8d1a @4183a04c @3a447f2a If someone's  going to put a robot in my house, I'd  rather have one that does some of the housework rather than one that watches and records me not doing the housework. Kinder, I think. 

 @0177da18 @0ecd8d1a @4183a04c @3a447f2a I was envisioning a robot that would do all the lifting and carrying - move groceries from the door to the kitchen counter, lift laundry baskets, and bring me a lunch tray.

But what I really need is something to track cognitive exertion and posture.

Am I avoiding looking at blinky things?  What does my phone to no-screen time ratio look like? Am I spending more time horizontal or sitting up? 

 @bdabbff7 @0ecd8d1a @4183a04c @3a447f2a  What would you do with this data? 

 4/

"This reality also helps explain, once again, the staying power of old ideas. Short-term and low-cost interventions such as GET and CBT are attractive not because of their evidence base, which has been exposed as flimsy and unconvincing, but rather because of their seemingly plausible and easily replicated approach to a very complex scientific and public health issue. (contd)”

@4183a04c @3a447f2a #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome 

 5/

"(Contd.) The converse is clear as well when critics frame research into the biology and pathophysiology of ME/CFS or #longCOVID as unnecessarily expensive. If you’re reluctant to spend significant resources addressing a new problem, ignoring its potential significance is an understandable strategy."

@4183a04c @3a447f2a #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE 

 6/
“Although paradigms are bound to shift when new knowledge contradicts prior beliefs, the resistance phase can be highly troublesome. This is especially the case when purportedly effective treatments arising out of poor-quality science carry a risk to human welfare. In the current context, psycho-behavioral approaches to treatment have been shown to be not only flawed but likely harmful by triggering the serious relapses that characterize PEM (contd)” @4183a04c @3a447f2a #mecfs 

 7/

“(Contd) Ongoing resistance to the paradigm shift only ensures that patients will continue to be offered inadequate & possibly dangerous therapies. Recent reports from patient support groups suggest that many health care services across England are not yet aligned with the new ME/CFS guideline, still offering treatments that are now disfavored”

@4183a04c @3a447f2a #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #ME #CFSME #CFIDS
#SEID #NeuroME 

 8/

“A new NIH institute or center for post-infectious illness is a promising prospect. However, any such initiative is unlikely to happen quickly, & obtaining actionable results would take even longer. In the interim, we believe medical & public health authorities should not wait for the paradigm to shift by itself. Instead, they must push the paradigm & help ensure its onward passage against the forces of resistance & revanchism”

@4183a04c @3a447f2a #MEcfs #CFS #MyalgicE #PwME