🧵
"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/
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
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
“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
4/
“The guideline makes clear any program based on fixed incremental increases in physical activity/exercise eg graded exercise therapy should not be offered as a treatment for ME/CFS & emphasises cognitive behavioural therapy should only be offered as a supportive intervention”
“The guideline makes clear any program based on fixed incremental increases in physical activity/exercise eg graded exercise therapy should not be offered as a treatment for ME/CFS & emphasises cognitive behavioural therapy should only be offered as a supportive intervention”
5/
“The guideline acknowledges people with #MECFS may have experienced prejudice & disbelief by people who do not understand their illness & encourages practitioners to consider…the individual may have lost trust in health & social services & be hesitant about their involvement”
“The guideline acknowledges people with #MECFS may have experienced prejudice & disbelief by people who do not understand their illness & encourages practitioners to consider…the individual may have lost trust in health & social services & be hesitant about their involvement”
6/
“The [NICE #MEcfs] guideline recognises that ME/CFS can cause profound, long-term disability, worsened when family, carers, employers, and clinicians fail properly to recognise the condition and its impact”
#CFS #PwME
“The [NICE #MEcfs] guideline recognises that ME/CFS can cause profound, long-term disability, worsened when family, carers, employers, and clinicians fail properly to recognise the condition and its impact”
#CFS #PwME
7/
“This has been compounded by a lack of effective treatments, wide variation in access to services, & no central register of harms experienced by patients from the treatments offered, which has served only to further alienate many people with ME/#CFS (contd)”
#GET #PwME
“This has been compounded by a lack of effective treatments, wide variation in access to services, & no central register of harms experienced by patients from the treatments offered, which has served only to further alienate many people with ME/#CFS (contd)”
#GET #PwME
8/
(Contd) “and, in some cases, to undermine the confidence of those caring for them”
Tom: Great to see this. I first mentioned the central register point in a published letter in 2010
#MEcfs #CFS #GradedExercise #GradedExerciseTherapy #cfsme #pwme #MyalgicEncephalomyelitis
(Contd) “and, in some cases, to undermine the confidence of those caring for them”
Tom: Great to see this. I first mentioned the central register point in a published letter in 2010
#MEcfs #CFS #GradedExercise #GradedExerciseTherapy #cfsme #pwme #MyalgicEncephalomyelitis
9/
“Earlier suspicion of ME/CFS and the recommendation for initial interventions including advice on activity, energy, and symptom management aim to reduce morbidity (as a secondary prevention strategy).”
#MEcfs #CFS
“Earlier suspicion of ME/CFS and the recommendation for initial interventions including advice on activity, energy, and symptom management aim to reduce morbidity (as a secondary prevention strategy).”
#MEcfs #CFS
10/
“People with ME/CFS should be advised to remain within their energy limit when undertaking activity of any kind. This means they should not push through symptoms to complete tasks, to reduce the risk of post-exertional malaise. (Contd)”
#mecfs #pwme
“People with ME/CFS should be advised to remain within their energy limit when undertaking activity of any kind. This means they should not push through symptoms to complete tasks, to reduce the risk of post-exertional malaise. (Contd)”
#mecfs #pwme
11/
“(Contd) They [people with ME/CFS] can be guided in this approach through energy management techniques and should balance activity with regular rest periods.”
#cfs #pwMEs
“(Contd) They [people with ME/CFS] can be guided in this approach through energy management techniques and should balance activity with regular rest periods.”
#cfs #pwMEs
12/
Summary of Messages from the 2021 ME/CFS NICE Guideline
From:
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults" (Dec 2022)
mdpi.com/2227-9032/10/1…
#MEcfs #MedTwitter #MedEd #MECFS
Summary of Messages from the 2021 ME/CFS NICE Guideline
From:
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults" (Dec 2022)
mdpi.com/2227-9032/10/1…
#MEcfs #MedTwitter #MedEd #MECFS
13/
“Post-exertional malaise in the first few months after a viral infection is usually a red flag for ME/CFS.”
#postviralillness #postviralsyndrome #postexertionalmalaise #mecfs #cfs
“Post-exertional malaise in the first few months after a viral infection is usually a red flag for ME/CFS.”
#postviralillness #postviralsyndrome #postexertionalmalaise #mecfs #cfs
14/
"Recommendations from the 2021 ME/CFS Guideline"
From:
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults" (Dec 2022)
mdpi.com/2227-9032/10/1…
#MEcfs #MedTwitter #MedEd @adambeyoncelowe
"Recommendations from the 2021 ME/CFS Guideline"
From:
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults" (Dec 2022)
mdpi.com/2227-9032/10/1…
#MEcfs #MedTwitter #MedEd @adambeyoncelowe
15/
“It is critical that people with ME/CFS have access to:
•an early and accurate diagnosis so they get appropriate care, and
•regular monitoring and review, particularly when their symptoms are worsening or changing”
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME
“It is critical that people with ME/CFS have access to:
•an early and accurate diagnosis so they get appropriate care, and
•regular monitoring and review, particularly when their symptoms are worsening or changing”
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME
16/
“Flexibility in care provision according to the needs of the individual, including remote consultations, is essential. Home visits may be required by those severely affected, & the practitioner is unlikely to see the person with ME/CFS at their worst.
#mecfs #cfs #SevereME
“Flexibility in care provision according to the needs of the individual, including remote consultations, is essential. Home visits may be required by those severely affected, & the practitioner is unlikely to see the person with ME/CFS at their worst.
#mecfs #cfs #SevereME
17/
“Fluctuating symptoms may lead to cancelled appointments, so flexibility is crucial”
#MyalgicEncephalomyelitis #MEcfs #CFS #ChronicFatigueSyndrome
“Fluctuating symptoms may lead to cancelled appointments, so flexibility is crucial”
#MyalgicEncephalomyelitis #MEcfs #CFS #ChronicFatigueSyndrome
18/
"Major Symptoms for Suspecting ME/CFS" & "Other Common Symptoms of ME/#CFS"
From:
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults" (Dec 2022)
mdpi.com/2227-9032/10/1…
#MEcfs #PwME
"Major Symptoms for Suspecting ME/CFS" & "Other Common Symptoms of ME/#CFS"
From:
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults" (Dec 2022)
mdpi.com/2227-9032/10/1…
#MEcfs #PwME
19/
[#MEcfs patients should be advised]
-not to use more energy than they have—they should manage their daily activity & not push through symptoms
-to rest & convalesce as needed (this may require changes to their daily routine, incl. work, education, & other activities)"
#cfs
[#MEcfs patients should be advised]
-not to use more energy than they have—they should manage their daily activity & not push through symptoms
-to rest & convalesce as needed (this may require changes to their daily routine, incl. work, education, & other activities)"
#cfs
20/
“Pain should be investigated and managed according to best practice. Musculo-skeletal pain, neuropathic pain and headaches are the most common presentations. Treatments for pain that include exercise are unlikely to be suitable”
#MEcfs #CFS #PwME
“Pain should be investigated and managed according to best practice. Musculo-skeletal pain, neuropathic pain and headaches are the most common presentations. Treatments for pain that include exercise are unlikely to be suitable”
#MEcfs #CFS #PwME
21/
“Rest should be part of any daily routine with frequency and duration appropriate to individual needs”
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
“Rest should be part of any daily routine with frequency and duration appropriate to individual needs”
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
22/
“Practitioners should also work with the person to find ways of minimising complications caused by gastrointestinal symptoms (e.g. nausea, changes to appetite, swallowing difficulties, sore throat or difficulties with the energy required to buy, prepare, & eat food) (contd)”
“Practitioners should also work with the person to find ways of minimising complications caused by gastrointestinal symptoms (e.g. nausea, changes to appetite, swallowing difficulties, sore throat or difficulties with the energy required to buy, prepare, & eat food) (contd)”
23/
(Contd) “This may require medication, changes to diet or adaptations around the home.”
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
(Contd) “This may require medication, changes to diet or adaptations around the home.”
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
24/
“People with ME/CFS may need aids & adaptations (such as a wheelchair, blue badge or stairlift) to help maintain their independence & improve their quality of life. These should be part of the care & support plan if they would benefit”
#MEcfs #CFS #MyalgicEncephalomyelitis
“People with ME/CFS may need aids & adaptations (such as a wheelchair, blue badge or stairlift) to help maintain their independence & improve their quality of life. These should be part of the care & support plan if they would benefit”
#MEcfs #CFS #MyalgicEncephalomyelitis
From:
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults"
mdpi.com/2227-9032/10/1…
@adambeyoncelowe
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults"
mdpi.com/2227-9032/10/1…
@adambeyoncelowe
@adambeyoncelowe 26/
Relapses
From:
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome in Adults" (Dec 2022)
mdpi.com/2227-9032/10/1…
Relapses
From:
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome in Adults" (Dec 2022)
mdpi.com/2227-9032/10/1…
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