Tom Kindlon Profile picture
Jul 27 11 tweets 10 min read
🧵
“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
4/
“The condition [#Fibromyalgia] 'doesn't have clear biological markers and therefore attracts hostility from some in the medical community,' rheumatologist Prof. Dan Buskila…, a leading researcher on the condition, told The Times of Israel in October”

#Fibro #FMS #FM
5/
Researchers “report in the peer-reviewed journal Pain they’ve identified patterns in the gut that could form the basis of an objective method to diagnose fibromyalgia.They built an algorithm for research purposes that was able to use the insights to detect fibromyalgia(contd)”
6/
“(Contd) and hope to eventually develop it [the test for #Fibromyalgia] into a tool for doctors”

journals.lww.com/pain/Abstract/…

#Fibro #FMS #FM
7/
“The [research] team first showed in 2019 that #fibromyalgia was linked to
alterations in the gut microbiome. Now, it has documented precise
microbiome changes which it says are telltale signs of fibromyalgia”

#fibromyalgie #Fibrositis #FibromyalgiaSyndrome #Fibro #FMS #FM
8/
“‘These findings are surprising and show a strong connection between the composition of the intestinal bacteria, the concentration of bile acids in the blood and the severity of the symptoms in people with #fibromyalgia,’ said Minerbi”

#Fibro #FMS #FM
9/
“He stressed that the idea that bile acids can affect physiological
processes isn't new, and has been explored in depth in relation to
numerous conditions, including visceral pain. However, he said, their
connection to #fibromyalgia has received little attention”

#FM #FMS
10/
“Minerbi noted that the relevance of the research goes beyond diagnosis
and could eventually provide a strategy to treat fibromyalgia, if it is
shown that the unusual patterns in the guts of affected people actually
cause #fibromyalgia

#Fibro #FMS #FM
11/
“The hope is that if this is the case, therapies to adjust the microbiome may have potential as treatments [for #Fibromyalgia].

Dr. Yoram Shir, one of Minerbi's co-authors from McGill, said that the
new research 'brings us closer to developing an effective treatment’”

#FMS

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More from @TomKindlon

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
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%”
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
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

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