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Jun 25 • 4 tweets • 7 min read
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
4/
“Given that patients with #ME/#CFS had more severe conditions in the acute phase of COVID-19, the severity of the acute infectious state might be involved in the pathophysiology of #MECFS”

#LongCovid #PwLC #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #MEeps #CFIDS

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More from @TomKindlon

Tom Kindlon Profile picture
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
Tom Kindlon Profile picture
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
Tom Kindlon Profile picture
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
Tom Kindlon Profile picture
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"

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
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
Tom Kindlon Profile picture
Nov 21, 2020
[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
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"
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
Read 15 tweets
Tom Kindlon Profile picture
Nov 13, 2020
[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…
1/n
2/n
 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…
3/n
 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…
Read 11 tweets

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