Tom Kindlon Profile picture
Oct 26 7 tweets 7 min read
🧵
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
3/

"The presence of orthostatic intolerance and post-exertional malaise/ post-exertional symptom exacerbation (#PEM/#PESE) requires interventions to be modified in view of these diagnoses for rehabilitation to be safe"
4/

"For the clinical management of ME/#CFS patients and #LongCOVID patients with PEM*/PESE** it is recommended to use education and skills training on energy conservation techniques such as pacing."

*post-exertional malaise
**post-exertional symptom exacerbation

#MEcfs #PwME
5/

"ME/CFS and Long COVID guidelines do not recommend the use of functional neurological disorder rehabilitation methods."

#LongCOVID #MEcfs
6/

"The key components of ME/CFS and Long COVID treatment and rehabilitation are ..." (see image)

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #LongCovid #Covidlonghaulers #PwLC
7/

From the "key content" section of:
12-page report on "International Conference ME/CFS & Long COVID – Treatment & Rehabilitation"
<omt.org/wp-content/upl…>

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #LongCovid #Covidlonghaulers #MEcfs

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More from @TomKindlon

Oct 5
🧵
“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
Jul 29
🧵
Press release for new Canadian research paper:

“Histamine-producing gut bacteria can trigger chronic abdominal pain. The discovery has been named Klebsiella aerogenes, the McMaster-Queen (MQ) strain”

sciencedaily.com/releases/2022/…

#IrritableBowelSyndrome #IBS #IrritableBowel

1/
2/

“The culprit is what has now been named Klebsiella aerogenes, the McMaster-Queen (MQ) strain, identified in up to 25 per cent of gut microbiota samples from patients with #IBS. Researchers examined stool microbiota samples from both Canadian and American patient cohorts”
3/

“Researchers from McMaster University and Queen's University have discovered a gut bacterial 'super-producer' of histamine that can cause pain flare-ups in some patients with #irritablebowelsyndrome (#IBS).”
Read 11 tweets
Jul 27
🧵
“Israeli finding may make hard-to-diagnose #fibromyalgia easy to confirm:The chronic pain condition can be detected based on analysis of gut microbiome,scientists say in peer-reviewed research,potentially paving way for objective diagnosis,treatment”
timesofisrael.com/israeli-findin…
1/
2/

“Many medical professionals have been eager for an objective diagnostic method [for #Fibromyalgia], both for practical reasons and also to rebuff those who doubt the genuineness of the condition”

#Fibro #FM #FMS
3/
“researchers…say they have found biological markers. They report in the peer-reviewed journal Pain that they have identified patterns in the gut that could form the basis of an objective method to diagnose #fibromyalgia

#Fibro #FMS #FM
Read 11 tweets
Jul 21
🧵
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
3/
“(Contd) and thus to ‘recovery’ and re-entry into the labour market. Such health conditions could thus be largely exempted from welfare provision, private disability insurance protection & on-going biomedical care, reducing state expenditure in these areas (contd)”
#MEcfs #CFS
Read 17 tweets
Jul 12
🧵
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
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
Jul 11
🧵
“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/
2/

“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
Read 5 tweets

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