Discover and read the best of Twitter Threads about #PostViralSyndrome

Most recents (8)

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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
2/

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
3/

“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

1/ Image
2/

“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
3/
“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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Press release for New Zealand paper:

“New research provides insight into Long COVID and ME: Researchers have uncovered how post-viral fatigue syndromes, including #LongCOVID, become life-changing diseases & why patients suffer frequent relapses”

#MEcfs #CFS #PwME #PwLC

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“Arising commonly from a viral infection, #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (#ME/#CFS), is known to cause brain-centered symptoms of neuroinflammation, loss of homeostasis, brain
fog, lack of refreshing sleep, & poor response to even small stresses”

#MEcfs
3/

“#LongCOVID has similar effects on people and is believed to also be
caused by neuroinflammation.

Lead author Emeritus Professor Warren Tate, of the University of Otago's Department of Biochemistry, says how these debilitating brain effects develop is poorly understood”
Read 14 tweets
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New Zealand:
“Scientists studying potential link between [#ChronicFatigueSyndrome] & #longCovid struggle for funding”

stuff.co.nz/national/healt


On Prof Tate & his research team. He seems like the sort of scientist we really want in field.

#MEcfs #PwME #MyalgicE #CFS #CFSME
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“A small Dunedin-based team of researchers are critical to
understanding fatigue disease in New Zealand, but they might not be
around in another year.”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralSyndrome #PVFS #LongCovid #MEcfs #CFS #PwME #PwLC #MyalgicE
3/

“Emeritus Professor Warren Tate says it took two decades for #chronicfatiguesyndrome research to be taken seriously, yet after a decade of good work it is still a mission to secure funding.

As of this week, they still didn’t have the funding to continue in 2023”

#MEcfs #CFS
Read 10 tweets
[Thread]
"#MyalgicEncephalomyelitis/#ChronicFatigueSyndrome: Essentials of Diagnosis & Management" (from US ME/#CFS Clinician Coalition)

mayoclinicproceedings.org/article/S0025-


"21 clinicians specializing in ME/CFS convened to discuss best clinical practices for adults affected by #MECFS"

1/
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"the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/#CFS

#ChronicFatigueSyndrome #MEcfs #MyalgicE #PwME #MyE #MEeps
3/
"There are many steps that clinicians can take to improve the health, function, & quality of life of those with ME/#CFS, including those in whom #MECFS develops after COVID-19"

#PostViralFatigueSyndrome #PostViralSyndrome #PVFS #LongCovid #Covidlonghaulers #PostCovidSyndrome
Read 59 tweets
#LongCOVID19 thread.
Even only #chronicSmellingLoss #Anosmia can be devastating emotionally:
Affected people loose any enjoyment in domains like food, ignore bad smelling warnings of many hazards, can become anxieux about body odours or house odours they aren't aware of ect.1/
Besides, a #MaxPlanKInstitute team got data suggesting #chronicSmellingLoss means brain access: " #SARSCoV2 can enter the nervous system by crossing the neural–mucosal interface in olfactory mucosa..penetrating defined neuroanatomical areas.."2/ #LongCOVID
nature.com/articles/s4159

NB: Authors also suggest the existence of "other mechanisms or routes of viral entry into the brain " As we were able to detect #SARSCoV2 RNA in some individuals in CNS regions that have no direct connection to the olfactory mucosa..." #LongCOVID 3/
nature.com/articles/s4159

Read 15 tweets
Misleading about mainstream CBT for #MECFS: the manuals show it's about reversing symptoms & impairments, & claim people should be able to recover with CBT. The results from trials are not particularly exciting esp. with regard to objective +/or long-term outcome measures

#CFS
I'm not convinced by this claim either "Unsurprisingly, people experiencing many symptoms like this feel anxiety, which in turn can drive more physical symptoms.”

But otherwise could have been a lot worse.

#PostViralFatigueSyndrome #PostViralSyndrome #PVFS #MEcfs #CFS #MyalgicE
"ME/CFS has been continually written off–even by some in medicine–as a “made-up” or “psychological” issue because biological triggers for the issues have yet to be found. This can see patients maligned rather than supported" Cohort studies have shown it often follows infections
Read 4 tweets
[Thread]
“Doctors examining possible link between #chronicfatiguesyndrome and #COVID19: For many, chronic fatigue syndrome develops after a viral infection” by Dr Danielle Weitzer and Dr Christie Richardson

abcnews.go.com/Health/doctors


#LongCovid #MEcfs #CFS #PostCovid #PVFS

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“By this point, many people can identify symptoms of #COVID19 -- fever, fatigue, shortness of breath -- but fewer know that those can occur after a successful recovery* and closely resemble another illness: #chronicfatiguesyndrome”

*I dislike using “recovery” in this way
3/n
“‘About 75 to 80% of #chronicfatiguesyndrome cases are post-viral in nature,’ estimated Dr. Mark VanNess, ‘The viral infection and following immune response are precipitating causes for long-term symptoms.’”

#LongCovid #PostViralSyndrome #PostViralFatigueSyndrome #MEcfs #CFS
Read 6 tweets

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