Discover and read the best of Twitter Threads about #pwMEs

Most recents (4)

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"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults" (Dec 2022)

2 of 4 authors are MDs

Free
mdpi.com/2227-9032/10/1


I thought this was very good. Will post extracts.
#MEcfs #CFS #MedEd
1/ Screenshot of abstract
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My overview:

Paper has lots of useful points & also helpful overall to show how the NICE guidelines for ME/CFS have changed dramatically in the UK from the 2007 version, with the updated approach being much more sympathetic regarding helping patients.

#MyalgicE #PwME #CFSME
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“The new NICE guideline for ME/CFS
recognis[es] the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test.”

#mecfs #cfs #neurome #cfsme #myalgice #pwme
Read 26 tweets
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“What Is #LongCOVID—and How Are We Going to Solve It? This potentially life-altering post-viral syndrome may have affected as many as 23 million Americans (and counting)”

Contains quite a bit of discussion about #MEcfs

prevention.com/health/health-


#CFS #PwLC #PwME #CFSME

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“We’re starting to gain more understanding of what’s driving #longCOVID & who is most at risk, & the more we understand, the more it will help us get a grip on similar chronic illnesses, like #MECFS, that have been largely ignored for far too long” - @VirusesImmunity

#CFD
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“In those who felt ill from #postCOVID19 syndrome for at least six months, the most common symptoms were fatigue, cognitive dysfunction, & post-exertional malaise (a triad that besets many people with #MECFS), according to the study” of 3762 patients by @patientled

#LongCovid
Read 12 tweets
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Some extracts from “The politics underpinning the neglect of people with ME/#CFS” which summarises her paper “Towards a critical psychology of #chronicfatiguesyndrome: #biopsychosocial narratives & UK welfare reform” by @JoElizaHunt

mecentraal.wordpress.com/2022/06/19/the


#MEcfs #PwME

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“The [#biopsychosocial] model has been used as psychosocial model, to re-frame chronic health conditions (particularly those surrounded by medical controversy or uncertainty) into psychosocial entities, allegedly amenable to psychosocial healthcare interventions (contd)”

#BPS
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“(Contd) and thus to ‘recovery’ and re-entry into the labour market. Such health conditions could thus be largely exempted from welfare provision, private disability insurance protection & on-going biomedical care, reducing state expenditure in these areas (contd)”
#MEcfs #CFS
Read 17 tweets
Press Release from NICE about its new draft #MECFS guidelines that are out for consultation

meresearch.org.uk/nice-guideline


“The draft guideline also highlights the importance of ensuring that people remain in their ‘energy envelope’ when undertaking activity of any kind”

#CFS

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Draft NICE guidance “recognizes that #MECFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms,particularly where there is the potential for an intervention to benefit some people but cause harm in others”
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“Because of harms reported by people with #MECFS + the committee’s own experience of the effects when people exceed their energy limits...any programme based on fixed incremental increases in physical activity or exercise eg GET should not be offered for treatment of ME/#CFS”
Read 13 tweets

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