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Tom Kindlon | 1 years ago (raw) | root | parent | reply | flag 
 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
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Tom Kindlon | 1 years ago (raw) | root | parent | reply | flag 
 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
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Tom Kindlon | 1 years ago (raw) | root | parent | reply | flag 
 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
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Tom Kindlon | 1 years ago (raw) | root | parent | reply | flag 
 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