Discover and read the best of Twitter Threads about #cfsme
Most recents (15)
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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/2227-9032/10/1âŠ
I thought this was very good. Will post extracts.
#MEcfs #CFS #MedEd
1/
"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/2227-9032/10/1âŠ
I thought this was very good. Will post extracts.
#MEcfs #CFS #MedEd
1/
Some articles on ME/CFS are ignorant, but @nataliesurelyâs @newrepublic piece last month is so shockingly bad, so suffused with CBT/GET Brigade rhetoric that itâs hard not to believe itâs an exercise in bad faith. 1/7
The familiar tropes are all there, from the suggestion patients disparage mental health disorders and turn to illness because it gives them identity to misleading descriptions of what PACE offers and represents. 2/7
One line particularly stuck in my craw, though: âConsidering PACEâs ultimately rather mundane finding, the tenacity of the response [from pts] is quite surprising.â The line implies unreasoned outrage on the part of patients. 3/7
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âWhat Is #LongCOVIDâand 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)â
Contains quite a bit of discussion about #MEcfs
prevention.com/health/health-âŠ
#CFS #PwLC #PwME #CFSME
1/
âWhat Is #LongCOVIDâand 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)â
Contains quite a bit of discussion about #MEcfs
prevention.com/health/health-âŠ
#CFS #PwLC #PwME #CFSME
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2/
âWeâre starting to gain more understanding of whatâs 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 longâ - @VirusesImmunity
#CFD
âWeâre starting to gain more understanding of whatâs 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 longâ - @VirusesImmunity
#CFD
3/
âIn 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 studyâ of 3762 patients by @patientled
#LongCovid
âIn 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 studyâ of 3762 patients by @patientled
#LongCovid
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Some extracts from âThe politics underpinning the neglect of people with ME/#CFSâ which summarises her paper âTowards a critical psychology of #chronicfatiguesyndrome: #biopsychosocial narratives & UK welfare reformâ by @JoElizaHunt
mecentraal.wordpress.com/2022/06/19/theâŠ
#MEcfs #PwME
1/
Some extracts from âThe politics underpinning the neglect of people with ME/#CFSâ which summarises her paper âTowards a critical psychology of #chronicfatiguesyndrome: #biopsychosocial narratives & UK welfare reformâ by @JoElizaHunt
mecentraal.wordpress.com/2022/06/19/theâŠ
#MEcfs #PwME
1/
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âThe [#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)â
#BPS
âThe [#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)â
#BPS
Der neue Job
1) Habe mich nicht darum beworben, bin nicht gefragt worden, er wurde mir reingewĂŒrgt: 24h, 7d, kein Urlaubsanspruch, unbefristet. Erfolgsaussichten? Vage. Stellenbeschreibung: nebulös. Soziale Anerkennung noch mieser als die Bezahlung.
1) Habe mich nicht darum beworben, bin nicht gefragt worden, er wurde mir reingewĂŒrgt: 24h, 7d, kein Urlaubsanspruch, unbefristet. Erfolgsaussichten? Vage. Stellenbeschreibung: nebulös. Soziale Anerkennung noch mieser als die Bezahlung.
2) Hab versucht, diesen Job so schnell wie möglich abzuwickeln, doch er klebt an mir fest wie das Pech an der Marie, wo vorher noch Gold glitzerte.
Nur ich kann ihn erledigen, nimmt mir keiner ab, aber eine Einarbeitung wÀre hilfreich. Die einen raten: Abwarten und Tee trinken.
Nur ich kann ihn erledigen, nimmt mir keiner ab, aber eine Einarbeitung wÀre hilfreich. Die einen raten: Abwarten und Tee trinken.
3) Ohne FleiĂ kein Preis, belehren die nĂ€chsten. Andere meinen, ich soll mich einfach mal zusammenreiĂen.
Ich habe GrĂŒntee getrunken, davon bekam ich Herzrasen, dagegen hilft WeiĂdorn. Johanniskraut ist gut gegen TrĂ€nenfluss, aber macht mĂŒde⊠Abwarten ist schwieriger.
Ich habe GrĂŒntee getrunken, davon bekam ich Herzrasen, dagegen hilft WeiĂdorn. Johanniskraut ist gut gegen TrĂ€nenfluss, aber macht mĂŒde⊠Abwarten ist schwieriger.
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Press release for New Zealand paper:
âNew 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 relapsesâ
#MEcfs #CFS #PwME #PwLC
1/
Press release for New Zealand paper:
âNew 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 relapsesâ
#MEcfs #CFS #PwME #PwLC
1/
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âArising 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 stressesâ
#MEcfs
âArising 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 stressesâ
#MEcfs
3/
â#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 understoodâ
â#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 understoodâ
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âScottish Government backs NICE guidelineâ
actionforme.org.uk/news/scottish-âŠ
âIn December 2021, the Scottish Government commissioned Blake Stevenson Ltd to engage with stakeholdersâŠto gather
their views on the NICE guideline on #ME/#CFSâ
#MEcfs #PwME #ChronicFatigueSyndrome
1/
âScottish Government backs NICE guidelineâ
actionforme.org.uk/news/scottish-âŠ
âIn December 2021, the Scottish Government commissioned Blake Stevenson Ltd to engage with stakeholdersâŠto gather
their views on the NICE guideline on #ME/#CFSâ
#MEcfs #PwME #ChronicFatigueSyndrome
1/
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âFor this independent stakeholder review, a total of 37 stakeholders contributed. This consisted of 14 clinicians, 10 third sector #ME/#CFS organisations/academics & 13 people with lived experience of #MECFS,
(contd.)â
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME
âFor this independent stakeholder review, a total of 37 stakeholders contributed. This consisted of 14 clinicians, 10 third sector #ME/#CFS organisations/academics & 13 people with lived experience of #MECFS,
(contd.)â
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME
3/
âand a further 93 people responded following an online survey [on the 2021 NICE #MECFS guidelines] that was
distributed to a wider stakeholder group. The response from the majority
of stakeholders was overwhelmingly positiveâ
#NeuroME #CFSME #MyalgicEncephalomyelitis
âand a further 93 people responded following an online survey [on the 2021 NICE #MECFS guidelines] that was
distributed to a wider stakeholder group. The response from the majority
of stakeholders was overwhelmingly positiveâ
#NeuroME #CFSME #MyalgicEncephalomyelitis
New from Spain:
"The use of oxygen as a possible screening biomarker for the diagnosis of chronic fatigue [#CFS]"
sciencedirect.com/science/articlâŠ
Involved looking at "the mean % of oxygen use in the aerobic-anaerobic transition phase or isocapnic buffering (IB)"
#PwME #MEcfs #CFSME
"The use of oxygen as a possible screening biomarker for the diagnosis of chronic fatigue [#CFS]"
sciencedirect.com/science/articlâŠ
Involved looking at "the mean % of oxygen use in the aerobic-anaerobic transition phase or isocapnic buffering (IB)"
#PwME #MEcfs #CFSME
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"The study of the combination of the factors O2 max, IB duration, and mean % of O2 use in IB support the validity of these as a screening biomarker for the diagnosis of CFS with a predictive power in our sample of over 90%."
#ChronicFatigueSyndrome #MyalgicEncephalomyelitis
"The study of the combination of the factors O2 max, IB duration, and mean % of O2 use in IB support the validity of these as a screening biomarker for the diagnosis of CFS with a predictive power in our sample of over 90%."
#ChronicFatigueSyndrome #MyalgicEncephalomyelitis
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"The results obtained make it possible to propose the confirmatory screening of the #CFS with a single laboratory test, and not with the 2 sessions of the most commonly used procedure currently with the importance that this stress reduction factor has for affected population"
"The results obtained make it possible to propose the confirmatory screening of the #CFS with a single laboratory test, and not with the 2 sessions of the most commonly used procedure currently with the importance that this stress reduction factor has for affected population"
New from Japan
âClinical Characteristics of #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (#ME/#CFS) Diagnosed in Patients with #LongCOVIDâ
mdpi.com/1648-9144/58/7âŠ
âThe overall prevalence rate of ME/CFS [in #LongCovid] diagnosed by three sets of #MECFS criteriaâŠwas 16.8%â
1/
âClinical Characteristics of #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (#ME/#CFS) Diagnosed in Patients with #LongCOVIDâ
mdpi.com/1648-9144/58/7âŠ
âThe overall prevalence rate of ME/CFS [in #LongCovid] diagnosed by three sets of #MECFS criteriaâŠwas 16.8%â
1/
2/
âmost frequent symptoms in #ME/#CFS patients were general fatigue & post-exertional malaise (89.4% of patients), headache (34.0%), insomnia (23.4%), dysosmia (21.3%) & dysgeusia (19.1%). Dizziness, chest pain, insomnia & headache were characteristic symptoms related to #MECFSâ
âmost frequent symptoms in #ME/#CFS patients were general fatigue & post-exertional malaise (89.4% of patients), headache (34.0%), insomnia (23.4%), dysosmia (21.3%) & dysgeusia (19.1%). Dizziness, chest pain, insomnia & headache were characteristic symptoms related to #MECFSâ
3/
âThe male to female ratio in #ME/#CFS patients was equal in the present study [48.9% vs 51.1%] although #MECFS was generally more common in women in previous studiesâ
#MyalgicEncephalomyelitis #LongCovid #PwLC #ChronicFatigueSyndrome #PwME #CFSME #SEID #postviralillness
âThe male to female ratio in #ME/#CFS patients was equal in the present study [48.9% vs 51.1%] although #MECFS was generally more common in women in previous studiesâ
#MyalgicEncephalomyelitis #LongCovid #PwLC #ChronicFatigueSyndrome #PwME #CFSME #SEID #postviralillness
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New Zealand:
âScientists studying potential link between [#ChronicFatigueSyndrome] & #longCovid struggle for fundingâ
stuff.co.nz/national/healtâŠ
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:
âScientists studying potential link between [#ChronicFatigueSyndrome] & #longCovid struggle for fundingâ
stuff.co.nz/national/healtâŠ
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/
âA small Dunedin-based team of researchers are critical to
understanding fatigue disease in New Zealand, but they might not be
around in another year.â
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralSyndrome #PVFS #LongCovid #MEcfs #CFS #PwME #PwLC #MyalgicE
âA small Dunedin-based team of researchers are critical to
understanding fatigue disease in New Zealand, but they might not be
around in another year.â
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralSyndrome #PVFS #LongCovid #MEcfs #CFS #PwME #PwLC #MyalgicE
3/
âEmeritus 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 didnât have the funding to continue in 2023â
#MEcfs #CFS
âEmeritus 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 didnât have the funding to continue in 2023â
#MEcfs #CFS
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âME/CFS: What Psychiatrists & Psychologists need to knowâ by @DoctorsWithME (March 2022)
doctorswith.me/me-cfs-what-psâŠ
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #NeuroME #MEcfs #CFS #PwME #CFSME
1/
âME/CFS: What Psychiatrists & Psychologists need to knowâ by @DoctorsWithME (March 2022)
doctorswith.me/me-cfs-what-psâŠ
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #NeuroME #MEcfs #CFS #PwME #CFSME
1/
2/
â#ME/#CFS is a chronic, complex, multi-system biological illness with often devastating consequences. It affects all age groups including children, and all social classes. About 75% of sufferers are femaleâ
#MyalgicEncephalomyelitis #MEcfs #PwME #CFSME #ChronicFatigueSyndrome
â#ME/#CFS is a chronic, complex, multi-system biological illness with often devastating consequences. It affects all age groups including children, and all social classes. About 75% of sufferers are femaleâ
#MyalgicEncephalomyelitis #MEcfs #PwME #CFSME #ChronicFatigueSyndrome
3/
ME/CFS âhas a worse quality of life score than many other serious illnesses including cancer, stroke, rheumatoid arthritis and MS. 25% of patients are housebound or bedbound.â
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #SevereME
ME/CFS âhas a worse quality of life score than many other serious illnesses including cancer, stroke, rheumatoid arthritis and MS. 25% of patients are housebound or bedbound.â
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #SevereME
There have been some really thoughtful comments since we shared our first #longCOVID rehabilitation paper on here and I wanted to take some time to transparently share 5 points about how our team has been tackling this complex and challenging problem - a thread (1/n)
1) Let's start with the "camp problem". Since the beginning we have noted the fact that #longCOVID shares similarities with #POTS, #dysautonomia, #CFSME, #MCAS, various #autoimmune conditions, et al. We are speaking with all of these communities and we are learning (2/n)
from some truly wonderful clinicians and patients, but we are not going to silo #longCOVID into just one of these conditions. In fact, as a group, our working hypothesis is that #longCOVID is unlikely to be one single condition...it is probably more like 5-10. (3/n)
Press Release from NICE about its new draft #MECFS guidelines that are out for consultation
meresearch.org.uk/nice-guidelineâŠ
âThe draft guideline also highlights the importance of ensuring that people remain in their âenergy envelopeâ when undertaking activity of any kindâ
#CFS
1/n
meresearch.org.uk/nice-guidelineâŠ
âThe draft guideline also highlights the importance of ensuring that people remain in their âenergy envelopeâ when undertaking activity of any kindâ
#CFS
1/n
2/n
Draft NICE guidance ârecognizes that #MECFS is a complex, multi-system, chronic medical condition where there is no âone size fits allâ approach to managing symptoms,particularly where there is the potential for an intervention to benefit some people but cause harm in othersâ
Draft NICE guidance ârecognizes that #MECFS is a complex, multi-system, chronic medical condition where there is no âone size fits allâ approach to managing symptoms,particularly where there is the potential for an intervention to benefit some people but cause harm in othersâ
[Thread]
âDoctors examining possible link between #chronicfatiguesyndrome and #COVID19: For many, chronic fatigue syndrome develops after a viral infectionâ by Dr Danielle Weitzer and Dr Christie Richardson
abcnews.go.com/Health/doctorsâŠ
#LongCovid #MEcfs #CFS #PostCovid #PVFS
1/n
âDoctors examining possible link between #chronicfatiguesyndrome and #COVID19: For many, chronic fatigue syndrome develops after a viral infectionâ by Dr Danielle Weitzer and Dr Christie Richardson
abcnews.go.com/Health/doctorsâŠ
#LongCovid #MEcfs #CFS #PostCovid #PVFS
1/n
2/n
âBy 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: #chronicfatiguesyndromeâ
*I dislike using ârecoveryâ in this way
âBy 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: #chronicfatiguesyndromeâ
*I dislike using ârecoveryâ in this way
3/n
ââAbout 75 to 80% of #chronicfatiguesyndrome cases are post-viral in nature,â estimated Dr. Mark VanNess, âThe viral infection and following immune response are precipitating causes for long-term symptoms.ââ
#LongCovid #PostViralSyndrome #PostViralFatigueSyndrome #MEcfs #CFS
ââAbout 75 to 80% of #chronicfatiguesyndrome cases are post-viral in nature,â estimated Dr. Mark VanNess, âThe viral infection and following immune response are precipitating causes for long-term symptoms.ââ
#LongCovid #PostViralSyndrome #PostViralFatigueSyndrome #MEcfs #CFS
The International Consensus Criteria for ME states: âMisperceptions have arisen because the name âCFSâ and its hybrids #MECFS, #CFSME and CFS/CF have been used for widely diverse conditionsâ. #pwME #MyalgicEncephalomyelitis
@EmergeAus âOur panel strongly recommends that only the name âmyalgic encephalomyelitisâ be used to identify patients meeting the ICC because a distinctive disease entity should have one name.â
@EmergeAus âPatients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.â
