[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
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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
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"key shift in NICE’s approach to ME rests on their new&improved attitude to evidence quality. As Prof Edwards argues in drug trials poor quality evidence is automatically discarded as it's recognised as having no value.Bad evidence is seen as equivalent to no evidence at all"
5/n
"However, when it comes to treatments for ME, the psychologically-oriented professions have seemed entirely happy to rely heavily on bad evidence, on the basis that it is the only evidence they have."

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE
6/n
"This domineering posture has long been employed by the coterie of establishment figures who have promoted the psychological treatment of ME, particularly in the UK. The new stance from NICE suggests their influence is now waning. Argument from authority no longer holds sway"
7/n
"Overall, across no fewer than 172 #CBT studies, NICE graded 153 (89%) as “VERY LOW” quality and the remaining 19 (11%) as “LOW” on quality. Not a single study was found to have exceeded that abysmal threshold."

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS
8/n
"A similar bloodbath befell studies of #gradedexercisetherapy (#GET). Of a total of 64 studies of GET, NICE determined 52 (81%) to be “VERY LOW” quality and 12 (19%) to be “LOW” quality. Again, not a single study was any better than “LOW” quality."

#MEcfs #CFS #MyalgicE
9/n
"The most common methodological problem identified in all these [#CBT & #GET] studies was “risk of bias.” We all know the reasons for this — dodgy control groups, absurd blinding, shameless goalpost-shifting, and the entire unseemly smorgasbord of #PACE-style strategies"
10/n
"In every single case, each of these so-called experts describes #CBT and #GET as “evidence-based” despite the fact that NICE has exposed the purported evidence to be of such low quality as to be meaningless. The “evidence” they refer to is not evidence at all"

#MEcfs #CFS
11/n
"NICE’s verdict on psychosocial treatments for ME amounts to nothing less than an utter repudiation. That it comes from an authoritative agency & is based on a thorough empirical review is extremely significant."

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS
12/n
"This is not just a turning point for people with ME, #CFS, and related conditions — it is a high-profile exposure of exactly how, for years, entire subfields of the psychological sciences have been willing to overlook, if not embrace, shoddy standards."

#MyalgicE
13/n
"In all respects, this public shaming [of proponents of cognitive behaviour therapy and graded exercise therapy for ME/CFS] is long overdue.

It is richly deserved."

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyE #EBM #EvidenceBasedMedicine

/end
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An image created by Horace Reid based on extracts from "No More Mr NICE Guy…" by Prof. Brian Hughes
thesciencebit.net/2020/11/21/no-…

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT #PwME #MyE
15/n
Another extract from "No More Mr NICE Guy…" by Brian Hughes (a professor of psychology) which I highly recommend

thesciencebit.net/2020/11/21/no-…

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT

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More from @TomKindlon

13 Nov
[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
10 Nov
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

1/n
2/n
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
9 Nov
Misleading about mainstream CBT for #MECFS: the manuals show it's about reversing symptoms & impairments, & claim people should be able to recover with CBT. The results from trials are not particularly exciting esp. with regard to objective +/or long-term outcome measures

#CFS
I'm not convinced by this claim either "Unsurprisingly, people experiencing many symptoms like this feel anxiety, which in turn can drive more physical symptoms.”

But otherwise could have been a lot worse.

#PostViralFatigueSyndrome #PostViralSyndrome #PVFS #MEcfs #CFS #MyalgicE
"ME/CFS has been continually written off–even by some in medicine–as a “made-up” or “psychological” issue because biological triggers for the issues have yet to be found. This can see patients maligned rather than supported" Cohort studies have shown it often follows infections
Read 4 tweets
8 Nov
[Thread]
“Doctors examining possible link between #chronicfatiguesyndrome and #COVID19: For many, chronic fatigue syndrome develops after a viral infection” by Dr Danielle Weitzer and Dr Christie Richardson

abcnews.go.com/Health/doctors…

#LongCovid #MEcfs #CFS #PostCovid #PVFS

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“By this point, many people can identify symptoms of #COVID19 -- fever, fatigue, shortness of breath -- but fewer know that those can occur after a successful recovery* and closely resemble another illness: #chronicfatiguesyndrome

*I dislike using “recovery” in this way
3/n
“‘About 75 to 80% of #chronicfatiguesyndrome cases are post-viral in nature,’ estimated Dr. Mark VanNess, ‘The viral infection and following immune response are precipitating causes for long-term symptoms.’”

#LongCovid #PostViralSyndrome #PostViralFatigueSyndrome #MEcfs #CFS
Read 6 tweets
19 Aug
[Thread]
"#LongHaulers Are Redefining #Covid_19: Without understanding the lingering illness that some patients experience, we can’t understand the #pandemic."

In-depth reporting by @edyong209.
Include some discussion of #MEcfs

theatlantic.com/health/archive…

#CFS #MyalgicE #PwME
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“[#Covid] #Longhaulers had to set up their own support groups. They had to start running their own research projects. They formed alliances with people who have similar illnesses, such as dysautonomia & #myalgicencephalomyelitis aka #chronicfatiguesyndrome
#Covid19 #Covid_19
3/n
“More than 90 percent of [#Covid] #longhaulers also have “post-exertional malaise,” in which even mild bouts of physical or mental exertion can trigger a severe physiological crash. “We’re talking about walking up a flight of stairs and being out of commission for two days,”
Read 9 tweets
27 Jul
2/n

“The ME/CFS community with its knowledgebase, its research findings, its doctors, advocates and the patients who have been through it all, has much to contribute to the long haulers.”

#LongCovid #COVIDー19 #longneglected #LonghaulersUnite #MyalgicEncephalomyelitis
3/n

“You should know – and may already very well know – that many doctors have reacted to this kind of illness by denying it, by downplaying it, or by calling it psychological.”

#longhaulers #LongCovid #COVIDー19 #COVID19 #COVID #MEcfs #CFS #MyalgicE #ChronicFatigueSyndrome
Read 13 tweets

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