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Tom Kindlon

@TomKindlon

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
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“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

@TomKindlon

Apr 23

@DoctorsWithME

🧵
“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

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“#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

@TomKindlon

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"the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/#CFS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

Tom Kindlon

@TomKindlon

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
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"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

@TomKindlon

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…
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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

Tom Kindlon

@TomKindlon

Nov 10, 2020

Press Release from NICE about its new draft #MECFS guidelines that are out for consultation

meresearch.org.uk/nice-guideline…

“The draft guideline also highlights the importance of ensuring that people remain in their ‘energy envelope’ when undertaking activity of any kind”

#CFS

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Draft NICE guidance “recognizes that #MECFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms,particularly where there is the potential for an intervention to benefit some people but cause harm in others”

3/n
“Because of harms reported by people with #MECFS + the committee’s own experience of the effects when people exceed their energy limits...any programme based on fixed incremental increases in physical activity or exercise eg GET should not be offered for treatment of ME/#CFS”

Read 13 tweets

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