Tom Kindlon Profile picture
Jul 12 14 tweets 13 min read
🧵
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
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”
4/

“In a study published in Frontiers in
Neurology, he & colleagues from Otago, Victoria Univ of Wellington & Uni of Technology Sydney, developed a unifying model to explain how the brain-centered symptoms of these diseases are sustained through a brain-body connection”

#PVFS
5/
“They propose that, following an initial viral infection or stressor
event, the subsequent systemic pathology moves to the brain via
neurovascular pathways or through a dysfunctional blood-brain barrier.
This results in chronic neuroinflammation (contd.)”

#postviralillness
6/
“(Contd) leading to a sustained
illness with chronic relapse recovery cycles.

The model proposes healing does not occur because a signal continuously
cycles from the brain to the body, causing the patient to relapse”

#MyalgicEncephalomyelitis #LongCovid #NeuroME #MyalgicE
7/

“The creation of this model is not only important for the 'huge research
effort ahead', but also to provide recognition for #MECFS & #LongCOVID sufferers. 'These diseases are very closely related, & it is clear the biological basis of Long COVID (contd)”

#postviralsyndrome
8/

“(contd) is unequivocally connected to the original COVID infection-so there should no longer be any debate &
doubt about the fact that post viral fatigue syndromes like #MECFS are
biologically based & involve much disturbed physiology,' Emeritus
Professor Tate says”

#CFS
9/
“This work will enable best evidence-based knowledge of these illnesses,
and best management practices, to be developed for medical professionals. 'Patients need appropriate affirmation of their biological-based illness (contd)”

#LongCovid #MEcfs #CFSME #MyalgicE #CFS #PwME
10/
“(Contd) and help to mitigate the distressing symptoms of these very difficult life-changing syndromes which are difficult for the patients to manage by themselves. 'This work highlighted that there is a susceptible subset of people who develop such syndromes”
#LongCovid #CFS
11/

“(Contd) when exposed to a severe stress, like infection with COVID-19, or the glandular fever virus Epstein Barr, or in some people with vaccination
that is interpreted as a severe stress”

#MyalgicEncephalomyelitis #LongCovid #ChronicFatigueSyndrome #MEcfs #CFS #PwME
12/

“What should be a transient
inflammatory/immune response in the body to clear the infection, develop
immunity & manage the physiological stress, becomes chronic, and so the disease persists.'”

#MyalgicEncephalomyelitis #LongCovid #ChronicFatigueSyndrome #PwLC #PwME #MEcfs
13/
“Warren Tate et al, Molecular Mechanisms of Neuroinflammation in #ME/#CFS and #LongCOVID to Sustain Disease and Promote Relapses, Frontiers in Neurology (2022).
frontiersin.org/articles/10.33…

Press release from medicalxpress.com/news/2022-07-i…

#MyalgicEncephalomyelitis #MEcfs #CFSME #PwME
14/

Thread on a subsequent radio interview and summary with Warren Tate

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More from @TomKindlon

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

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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
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
Jun 25
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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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
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
Read 4 tweets
Jun 24
[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
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
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
Read 4 tweets
Jun 22
🧵
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
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
Read 10 tweets
Apr 23
🧵
“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
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
Read 10 tweets
Sep 29, 2021
[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"

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"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
Read 59 tweets

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