Discover and read the best of Twitter Threads about #Chronicfatiguesyndrome
Most recents (24)
May is Myalgic Encephalomyelitis (ME) Awareness Month.
You can help by liking and/or retweeting this video. This 2017 TED talk features @jenbrea.
#MyalgicE #MyalgicEncephalomyelitis
Day #1
You can help by liking and/or retweeting this video. This 2017 TED talk features @jenbrea.
#MyalgicE #MyalgicEncephalomyelitis
Day #1
@jenbrea 2/
May is Myalgic Encephalomyelitis (ME) Awareness Month.
You can help by sharing and/or liking this video. It is 3 minutes 5 seconds long.
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This film will give you an introduction to PEM (Post Exertional Malaise).
Once you've understood what PEM is… twitter.com/i/web/status/1…
May is Myalgic Encephalomyelitis (ME) Awareness Month.
You can help by sharing and/or liking this video. It is 3 minutes 5 seconds long.
---
This film will give you an introduction to PEM (Post Exertional Malaise).
Once you've understood what PEM is… twitter.com/i/web/status/1…
@jenbrea 3/
May is Myalgic Encephalomyelitis (ME) Awareness Month.
You can help by sharing and/or liking this video (9 minutes) This is ME (2020) "A short film exploring 'Spoon Theory' told through the eyes of a young woman struggling with ME/Chronic Fatigue Syndrome"… twitter.com/i/web/status/1…
May is Myalgic Encephalomyelitis (ME) Awareness Month.
You can help by sharing and/or liking this video (9 minutes) This is ME (2020) "A short film exploring 'Spoon Theory' told through the eyes of a young woman struggling with ME/Chronic Fatigue Syndrome"… twitter.com/i/web/status/1…
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May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by liking and/or retweeting this image.
#MyalgicE #MyalgicEncephalomyelitis #Day1
May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by liking and/or retweeting this image.
#MyalgicE #MyalgicEncephalomyelitis #Day1
2/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.
You can help by retweeting and/or liking this image.
Day #2
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.
You can help by retweeting and/or liking this image.
Day #2
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
3/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.
You can help by re-tweeting and/or liking this image.
Day #3
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis
#ChronicFatigueSyndrome
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.
You can help by re-tweeting and/or liking this image.
Day #3
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis
#ChronicFatigueSyndrome
Amazing news this evening! The Neuropsychiatry of Chronic Fatigue Syndrome & #LongCovid - A Practical Guide is accredited for CPD by the RACGP (7.5 hrs) over 3 evenings. Self-accreditation for psychiatrists (7.5 hrs). Coming up in May! #ChronicFatigueSyndrome #LongCovid #meded
Day 1
✅Neuropsychiatry of Chronic Fatigue Syndrome
✅Pathophysiology of Chronic Fatigue Syndrome
✅ Clinical Assessment of Chronic fatigue syndrome
✅Management principles in Chronic fatigue syndrome
✅Clinical Case Study part 1 – Diagnostic aspects
✅Neuropsychiatry of Chronic Fatigue Syndrome
✅Pathophysiology of Chronic Fatigue Syndrome
✅ Clinical Assessment of Chronic fatigue syndrome
✅Management principles in Chronic fatigue syndrome
✅Clinical Case Study part 1 – Diagnostic aspects
✅ Neuropsychiatry of Long Covid
✅ Pathophysiology of Long Covid
✅ Clinical Assessment of Long Covid
✅ Management principles in Long Covid
✅ Clinical Case Study part 2 – Practical management of Long Covid
✅ Pathophysiology of Long Covid
✅ Clinical Assessment of Long Covid
✅ Management principles in Long Covid
✅ Clinical Case Study part 2 – Practical management of Long Covid
Around 7:00 am this morning, I also took my vitamin supplements: a woman's multivitamin, vitamin D, and Black Cohosh.
Black Cohosh is in the plant family of species on this planet (a naturally growing herb that has been used for quite some time). It helps your body produce produce estrogen but doesn't take effect as quickly as synthetic estrogen. (About 2 to 3 week buildup in body).
Black Cohosh really helped me with the hot flashes related to menopause,and it still helps, although the hot flashes are not quite as bad anymore. (About nine years of peri-, during, post- menopausal hot flashes. But I have been ill for quite some time). Check with a good doctor.
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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/
"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/
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12-page report on "International Conference
ME/#CFS & #LongCOVID – Treatment & Rehabilitation"
omt.org/wp-content/upl…
Conference website:
omt.org/me-cfs-long-co…
I found the report good though I'd be surprised if some annoying stuff hadn't been said by someone
#MEcfs
1/
12-page report on "International Conference
ME/#CFS & #LongCOVID – Treatment & Rehabilitation"
omt.org/wp-content/upl…
Conference website:
omt.org/me-cfs-long-co…
I found the report good though I'd be surprised if some annoying stuff hadn't been said by someone
#MEcfs
1/
2/
"[As well as post-exertional malaise] other common symptoms of #LongCOVID & ME/#CFS include fatigue, cognitive difficulties, dysautonomia, reduced tolerance to physical +/or cognitive exertion, brain fog, unrefreshing sleep, pain & immune system symptoms"
#MEcfs #PostCovid
"[As well as post-exertional malaise] other common symptoms of #LongCOVID & ME/#CFS include fatigue, cognitive difficulties, dysautonomia, reduced tolerance to physical +/or cognitive exertion, brain fog, unrefreshing sleep, pain & immune system symptoms"
#MEcfs #PostCovid
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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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“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
“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
I got ME after flu and within a few months became bedridden in a blacked out silent room ,fed liquid food through a straw and also lost speech. Doctor told me some symptoms were similar to stroke and brain injury 1 of 10
#MECFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#MECFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Extreme ME/CFS affects the whole family especially when intense pain , sensitivity to noise , light , touch are present. These are now medically recognised as symptoms. Everything within the house changes for everyone 2 of 10
After the worst year passed I was assessed as needing 24/7 care and received carers daily as I was better able to tolerate visitors in our home. When things improved we managed by ourselves 3 of 10
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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
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
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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
“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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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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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
“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”
🧵
“Scottish Government backs NICE guideline”
actionforme.org.uk/news/scottish-…
“In December 2021, the Scottish Government commissioned Blake Stevenson Ltd to engage with stakeholders…to gather
their views on the NICE guideline on #ME/#CFS”
#MEcfs #PwME #ChronicFatigueSyndrome
1/
“Scottish Government backs NICE guideline”
actionforme.org.uk/news/scottish-…
“In December 2021, the Scottish Government commissioned Blake Stevenson Ltd to engage with stakeholders…to gather
their views on the NICE guideline on #ME/#CFS”
#MEcfs #PwME #ChronicFatigueSyndrome
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“For 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.)”
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME
“For 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.)”
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME
3/
“and 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 positive”
#NeuroME #CFSME #MyalgicEncephalomyelitis
“and 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 positive”
#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/articl…
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/articl…
Involved looking at "the mean % of oxygen use in the aerobic-anaerobic transition phase or isocapnic buffering (IB)"
#PwME #MEcfs #CFSME
2/
"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
3/
"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
“Clinical Characteristics of #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (#ME/#CFS) Diagnosed in Patients with #LongCOVID”
mdpi.com/1648-9144/58/7…
“The overall prevalence rate of ME/CFS [in #LongCovid] diagnosed by three sets of #MECFS criteria…was 16.8%”
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“Clinical Characteristics of #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (#ME/#CFS) Diagnosed in Patients with #LongCOVID”
mdpi.com/1648-9144/58/7…
“The overall prevalence rate of ME/CFS [in #LongCovid] diagnosed by three sets of #MECFS criteria…was 16.8%”
1/
2/
“most 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 #MECFS”
“most 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 #MECFS”
3/
“The 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 studies”
#MyalgicEncephalomyelitis #LongCovid #PwLC #ChronicFatigueSyndrome #PwME #CFSME #SEID #postviralillness
“The 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 studies”
#MyalgicEncephalomyelitis #LongCovid #PwLC #ChronicFatigueSyndrome #PwME #CFSME #SEID #postviralillness
[Thread]
It's 3rd anniversary of our paper
"Monitoring treatment harm in #MyalgicEncephalomyelitis / #CFS: A freedom-of-information study of NHS specialist centres in England"
journals.sagepub.com/doi/abs/10.117…
Hopefully it will influence, among other things, #LongCovid clinics
#MEcfs
1/n
It's 3rd anniversary of our paper
"Monitoring treatment harm in #MyalgicEncephalomyelitis / #CFS: A freedom-of-information study of NHS specialist centres in England"
journals.sagepub.com/doi/abs/10.117…
Hopefully it will influence, among other things, #LongCovid clinics
#MEcfs
1/n
2/
Summary article for laypeople:
"Trial By Error: NHS ME/CFS Clinics Lax on Treatment Harms, Study Finds" (June 2019)
virology.ws/2019/07/16/tri…
#GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Summary article for laypeople:
"Trial By Error: NHS ME/CFS Clinics Lax on Treatment Harms, Study Finds" (June 2019)
virology.ws/2019/07/16/tri…
#GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
3/
I searched but couldn't find a legal copy online of "Monitoring treatment harm in #MyalgicE/#ChronicFatigueSyndrome ..." that others can access so I uploaded here researchgate.net/publication/33… what we submitted to the journal which is something we own the copyright on.
#MEcfs #CFS
I searched but couldn't find a legal copy online of "Monitoring treatment harm in #MyalgicE/#ChronicFatigueSyndrome ..." that others can access so I uploaded here researchgate.net/publication/33… what we submitted to the journal which is something we own the copyright on.
#MEcfs #CFS
🧵
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
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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
Many with #longCovid are finding it difficult to describe what they are feeling. Those of us in the #MECFS and #ChronicLymeDisease #EDS community have had longer to think about and put these experiences into words…
Post-viral illness wreaks havoc on multiple systems within your body which of course are interconnected. The way I describe it is that you are losing your body’s life force — this is different from your soul. And it’s not just energy. It’s your actual life’s force.
In the beginning when you first get sick, you can still feel the healthy parts of you versus the sick parts — kind of like layers of an onion.
But eventually the sick parts seep into the healthy parts and you can no longer distinguish between the two.
But eventually the sick parts seep into the healthy parts and you can no longer distinguish between the two.
Dear World,
Recently a man of much wealth and so undue power & influence, @elonmusk, made a bizarre, senseless attempt to malign a drug, #BUPROPION (aka Wellbutrin/Zyban), which continues to profoundly benefit the lives, the functioning, of myself & others.
1/📜
Recently a man of much wealth and so undue power & influence, @elonmusk, made a bizarre, senseless attempt to malign a drug, #BUPROPION (aka Wellbutrin/Zyban), which continues to profoundly benefit the lives, the functioning, of myself & others.
1/📜
The potential implications of this must be addressed.
Of all the drugs on the market — some easy to get as candy (alcohol, cigarettes, vaping), others blithely prescribed, often irresponsibly (opioids, broad-spectrum anti-biotics) &
2/📜
Of all the drugs on the market — some easy to get as candy (alcohol, cigarettes, vaping), others blithely prescribed, often irresponsibly (opioids, broad-spectrum anti-biotics) &
2/📜
in some cases even seemingly maliciously (opioids, anti-psychotics) — why would he pick one that´s been in use since the ´80s, never had any controversy, helps a lot of people lose weight, and helps a lot of us THINK, PERCEIVE, COMMUNICATE, LEARN, and MOVE ABOUT.
3/📜
3/📜
🧵
“ME/CFS: What Psychiatrists & Psychologists need to know” by @DoctorsWithME (March 2022)
doctorswith.me/me-cfs-what-ps…
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #NeuroME #MEcfs #CFS #PwME #CFSME
1/
“ME/CFS: What Psychiatrists & Psychologists need to know” by @DoctorsWithME (March 2022)
doctorswith.me/me-cfs-what-ps…
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #NeuroME #MEcfs #CFS #PwME #CFSME
1/
2/
“#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 female”
#MyalgicEncephalomyelitis #MEcfs #PwME #CFSME #ChronicFatigueSyndrome
“#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 female”
#MyalgicEncephalomyelitis #MEcfs #PwME #CFSME #ChronicFatigueSyndrome
3/
ME/CFS “has 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.”
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #SevereME
ME/CFS “has 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.”
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #SevereME
[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
#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/
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…
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…
nature.com/articles/s4159…
[Thread]
"No More Mr NICE Guy…" by Brian Hughes, a professor of psychology
thesciencebit.net/2020/11/21/no-…
An incisive blog that covers the NICE ME/#CFS guidelines, issues regarding trials of nonpharmacological interventions in general, appeals to authority, etc.
#MEcfs #MyalgicE
1/n
"No More Mr NICE Guy…" by Brian Hughes, a professor of psychology
thesciencebit.net/2020/11/21/no-…
An incisive blog that covers the NICE ME/#CFS guidelines, issues regarding trials of nonpharmacological interventions in general, appeals to authority, etc.
#MEcfs #MyalgicE
1/n
2/n
"The new [NICE] guidelines not only repudiate a heretofore favoured treatment approach for a particular illness, they also threaten to discredit an entire (albeit quirky) branch of medicine — and, for good measure, to cast clouds over significant swathes of psychology too"
"The new [NICE] guidelines not only repudiate a heretofore favoured treatment approach for a particular illness, they also threaten to discredit an entire (albeit quirky) branch of medicine — and, for good measure, to cast clouds over significant swathes of psychology too"
3/n
"Here is an extract from expert testimony provided by Jonathan Edwards, professor emeritus of clinical medicine at University College London" [on the #PACETrial authors trying to justify their use of post-hoc criteria rather than their original criteria]
#MEcfs #CFS #CBT
"Here is an extract from expert testimony provided by Jonathan Edwards, professor emeritus of clinical medicine at University College London" [on the #PACETrial authors trying to justify their use of post-hoc criteria rather than their original criteria]
#MEcfs #CFS #CBT
[Thread]
PD White has just co-authored a #MECFS paper which has a dubious, wishy-washy recovery definition: not a complete remission of symptoms & a return to premorbid functioning" but where basically people who are not recovered are seen as recovered
journals.sagepub.com/doi/10.1177/10…
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PD White has just co-authored a #MECFS paper which has a dubious, wishy-washy recovery definition: not a complete remission of symptoms & a return to premorbid functioning" but where basically people who are not recovered are seen as recovered
journals.sagepub.com/doi/10.1177/10…
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From a former patient of White's
'To me if I'm recovered, I'm able to come off benefits, work full time, do my house work & have a life. But when I said this he asked me: 'Do you want to go back to the life that gave you ME?' That's a cop out"
See more
s4me.info/threads/sick-o…
From a former patient of White's
'To me if I'm recovered, I'm able to come off benefits, work full time, do my house work & have a life. But when I said this he asked me: 'Do you want to go back to the life that gave you ME?' That's a cop out"
See more
s4me.info/threads/sick-o…
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These bizarre & infuriating comments in 2006 on the draft NICE guidelines show again Peter White's odd views about #MECFS in general & recovery in particular
"A Selection of points the Barts CF Service made during the NICE Guidelines for #CFS/ME:"
meagenda.wordpress.com/2007/09/06/a-s…
These bizarre & infuriating comments in 2006 on the draft NICE guidelines show again Peter White's odd views about #MECFS in general & recovery in particular
"A Selection of points the Barts CF Service made during the NICE Guidelines for #CFS/ME:"
meagenda.wordpress.com/2007/09/06/a-s…
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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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”
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
