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Brian Hughes Profile picture
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Apr 27 • 6 tweets • 5 min read
Minister Donnelly, with respect, this research is not "invaluable". It is not yet peer-reviewed. It is not yet published. It does not seem to be pre-registered. The findings on the face of things do not even demonstrate proof-of-concept

#LongCovid

1/6
There are many salient methodological shortcomings: (a) non-random selection of participants; (b) unclear diagnosis; (c) small sample; and (e) NO CONTROL GROUP; etc etc.

These pts had 'persistent symptoms' at best, far from the #LongCovid that affects so many

@ahandvanish

2/6
@ahandvanish This was a conference presentation, not a journal article. Its media appearance represents 'science-by-press-conference'. We should await peer-reviewed publication of final results.

Some 75% of "preprint" #COVID studies never go on to be published

3/6
nature.com/articles/d4158…
@ahandvanish Graded exercise treatments for post-viral fatigue illness are hugely controversial. In the UK, @NICEComms have recently outlawed the use of graded exercise approaches for one such illness

#MECFS #myalgicE #MillionsMissing

4/6
theguardian.com/society/2021/o…
Long Covid is a significant multi-system condition that threatens to leave a generation afflicted with disability and chronic illness. It demands firm govt attention, not cheerleading for flimsy research.

@Daltmann10 #LongCovid cc @gezmedinger

5/6
theguardian.com/society/2022/m…
@Daltmann10 @gezmedinger We need treatments that tackle the central biomedical & immunological problems of #LongCovid that afflict millions around the world.

In this context, an unpublished 40-person DIY exercise study -- with no control group -- is little to celebrate & very far from "invaluable"

6/6

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More from @b_m_hughes

Brian Hughes Profile picture
Dec 1, 2021
The argument (& headline) used in this article is simply at variance with the facts. One wonders what mindset produces such partisan claims.

And why does @Sciencenorwayno tag @guardianscience in its tweet? This is misinformation-based propaganda, not sci journalism

#MECFS

1/8
"Unfortunately, the recommendations made in the new NICE guidelines for chronic fatigue were not based on the published research."

This is absolutely bizarre. The GL was based on literally *hundreds* of published research findings

2/8
#MECFS #pwME

thesciencebit.net/2021/08/15/the…
"Instead, they were created by a committee, a third of which was made up of CFS/ME patients, members of ME associations and ME forums, also called the "ME community".

Just 25% were ME patient ​reps. 75% were clinicians, including snr consultants & academics

#MECFS

3/8
Read 8 tweets
Brian Hughes Profile picture
Oct 29, 2021
Here is a thread breaking down that statement by "medical leaders" on the new NICE guideline for #MECFS

TL;DR It's pretty weak...

1/12

rcplondon.ac.uk/news/medical-l…
"Medical leaders" have "signed" (although not using their names(!)), but have their members been balloted? No.

#MECFS #pwME

2/12
They agree that it is "important that all patients with this condition are given access to the best possible services and treatments available." Whoopy do. Nobody disagrees, *especially* not NICE

#MECFS #MillionsMissing

3/12
Read 12 tweets
Brian Hughes Profile picture
Oct 28, 2021
Media reporting new NICE #MECFS Guideline

#pwME #MillionsMissing

1/x
theguardian.com/society/2021/o…
#MECFS #pwME

thetimes.co.uk/article/me-pat…

2/x
BBC

#MECFS #pwME

bbc.com/news/health-59…
Read 25 tweets
Brian Hughes Profile picture
Sep 23, 2021
🧵Possible reasons why "There is no evidence that.."

1. Claim untrue
2. Claim true but evidence is misinterpreted
3. Claim true but wrong evidence is examined
4. Claim true but no data are available so we can *say* there is "no evidence"

For 1 to hold, 2-4 need to be ruled out
Some scientists will assert that burden of proof should be on a claimant. Where no "evidence" exists, a claim should be rejected, to avoid an "argument from ignorance".

But this presumes scientific infallibility. The scientist could just be wrong.

en.wikipedia.org/wiki/Argument_…
There's lots of "evidence" that human factors interfere with scientific reasoning & decision-making.

Scientists must guard against pet theories, reductionist methods & academic echo chambers. The best science is self-critical & cautious.

The best science accepts uncertainty
Read 4 tweets
Brian Hughes Profile picture
Sep 14, 2021
Yesterday I (& many others) tweeted about a highly dubious proposal submitted to the Senate of the British Psychological Society, that the Soc support "an information campaign to promote a biopsychosocial approach to #LongCOVID" 1/9

#psychtwitter

In my view (and that of others) the bid represented yet another brazen professionally territorial attempt to "claim" #LongCOVID as a psychological illness, in defiance of fast-accumulating scientific evidence to the contrary 2/9

thesciencebit.net/2021/04/06/cho…
Such efforts to "psychologise" physical illnesses not only stigmatise the ill & marginalised, they also promote a tolerance for bad research that reflects extremely poorly on psychological science & stifles its true potential 3/9
#LongCOVID #mecfs

thesciencebit.net/2021/08/09/how…
Read 9 tweets
Brian Hughes Profile picture
Aug 17, 2021
What an ill-educated, badly reasoned & frankly dumb comment this is, posted under story by @TimesONeill on new treatment standard for ME (myalgic encephalomyelitis)/CFS (chronic fatigue syndrome).

NICE are de-listing CBT & GET (graded exercise) as #MECFS therapies
#pwME

1/16
The author of the comment, MichaelS (who he?), makes many ranty points, touching on a several demeaning anti-disability tropes.

Internet comments that stigmatize disability groups are nothing new, unfortunately. But this comment is special

#pwME #MECFS #myalgicE

2/16
The commenter says, "how does he expect to measure success of such therapies, if not by patient reporting? There is no other measure of the impact of this condition!"

To which I say, "Are you kidding me?!"

#pwME #MECFS #myalgicencephalomyelitis

3/16
Read 16 tweets

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