Discover and read the best of Twitter Threads about #PVFS
Most recents (11)
🧵
“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/
“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/
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
“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
“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
🧵
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
1/
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
1/
2/
“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
“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
🧵
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
1/
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
1/
2/
“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
“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”
“#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”
🧵
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
1/
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
1/
2/
“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
“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
“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
Was genau ist eigentlich Pacing? Und wie vermeide ich Rückschläge? Wo lauern Stolpersteine und wie erkenne ich meine eigenen Grenzen?
Die 🌊11 rules of diving 🌊 können beim Erlernen von #Achtsamkeit und der Umsetzung von #pacing helfen.
🧵
@dg_mecfs @FatigatioeV @long_covid
Die 🌊11 rules of diving 🌊 können beim Erlernen von #Achtsamkeit und der Umsetzung von #pacing helfen.
🧵
@dg_mecfs @FatigatioeV @long_covid
#1 Dive within your limits
Individuelle (Tagesform beachten) Grenzen sollten unbedingt eingehalten werden um Rückschläge zu vermeiden. Aber dafür muss man sich & seinen Körper neu kennenlernen.
➡️ An #Grenzen rantasten, nicht einfach darüber hinweggehen & sich nicht vergleichen.
Individuelle (Tagesform beachten) Grenzen sollten unbedingt eingehalten werden um Rückschläge zu vermeiden. Aber dafür muss man sich & seinen Körper neu kennenlernen.
➡️ An #Grenzen rantasten, nicht einfach darüber hinweggehen & sich nicht vergleichen.
#2 Use the buddy system - do not dive alone
Als #team (oder Gruppe) ist vieles leichter und sicherer. Such dir eine(n) Leidensgenossen/-in oder tritt einer Selbsthilfegruppe bei, um deine Sorgen zu teilen und Feedback, Unterstützung & Tipps von anderen einzuholen. ➡️@LangzeitC
Als #team (oder Gruppe) ist vieles leichter und sicherer. Such dir eine(n) Leidensgenossen/-in oder tritt einer Selbsthilfegruppe bei, um deine Sorgen zu teilen und Feedback, Unterstützung & Tipps von anderen einzuholen. ➡️@LangzeitC
Trigger warning- Will try keep this short. Uncovering the scale of medical gaslighting and corporate corruption. Who teaches our doctors to dismiss medically unexplained symptoms as hysteria?
Lynn Turner- MUS management PowerPoint, Kings College London
Lynn Turner- MUS management PowerPoint, Kings College London
She also developed the GAS-light model as way of determining which treatments were worth trialling ie cost effectiveness - gauging effectiveness based on patient set goals for graded assessment. If we set the goals, its not on them if the treatments aren't effective, it's on us.
Michael Sharpe is a psychiatrist&an author of the fraudulent #PACETrial. He does consulting work for insurance companies & advises them that #ME is a mental health disorder. Here he consulting for Swiss Re, classifying #LC as 'health anxiety'-
[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/
"#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/
2/
"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
"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
"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
🌟Patients' Charter for ME/CFS/PVFS🌟
🌟1st aim: for patients to put their signature for their needs to the Roundtable
It will be physically & electronically sent to NICE
Idea: to share on the 18th October to clearly state what we deserve?
To Sign⬇️⬇️
docs.google.com/document/d/1XV…
🌟1st aim: for patients to put their signature for their needs to the Roundtable
It will be physically & electronically sent to NICE
Idea: to share on the 18th October to clearly state what we deserve?
To Sign⬇️⬇️
docs.google.com/document/d/1XV…
🌟2nd Aim: Charter to be available to anyone who needs it (spoon saver).
It has been collectively written to help give a concise statement of the strong, supportive foundation for the medical care we deserve.
To Download, Print, Share⬇️
docs.google.com/document/d/1OE…
It has been collectively written to help give a concise statement of the strong, supportive foundation for the medical care we deserve.
To Download, Print, Share⬇️
docs.google.com/document/d/1OE…
🌟3rd Aim: collaboratively create a Charter for #LongCovid
#PVFS (Post Viral Fatigue Syndrome) is a term applicable to ME - yet this can also include #LongCovid
#LongCovid community we need your help on this too - please sign🙏
There are many overlaps!
#PVFS (Post Viral Fatigue Syndrome) is a term applicable to ME - yet this can also include #LongCovid
#LongCovid community we need your help on this too - please sign🙏
There are many overlaps!
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
1/n
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
1/n
2/n
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”
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”
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
#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
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
[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
1/n
“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
1/n
2/n
“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
“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
“‘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
