Discover and read the best of Twitter Threads about #PaceTrial

Most recents (21)

🧵 thread

I never thought we would have to take the old stories out of mothballs again. 🕸🪰

But in 2022, the German institute IQWiG recommends the harmful treatment GET for mild and moderate ME patients.

So here we go again... 😮‍💨 What is Pacegate?

1/23
IQWiG's recommendation to GET in mild and moderate ME will result in many bedridden patients. It refers to the discredited PACE trial. Statistics professor Bruce Levin called PACE "the height of clinical trial amateurism."

2/23
Already the inclusion criteria of the PACE Trial are non-specific. The Oxford criteria are so broad, it is questionable how many participants had ME. In 2015, the US Agency for Healthcare Research and Quality wrote "[The Oxford criteria] may impair progress and cause harm."

3/23
Read 27 tweets
🧵Die Empfehlung des IQWiG zu GET bei milder und moderater ME wird viele Patient:innen in die Bettlägerigkeit bringen. Sie bezieht sich auf das diskreditierte PACE Trial. Statistikprofessor Bruce Levin bezeichnete PACE als «Höhepunkt des Amateurismus bei klinischen Studien».
1/22
Bereits die Einschlusskriterien des PACE Trial sind unspezifisch. Die Oxford-Kriterien sind so breit, dass es fraglich ist, wie viele der Teilnehmer ME hatten. 2015 schrieb das US-Gesundheitsministerium, über die Oxford Kriterien: «[they] may impair progress and cause harm».
2/22
Die Teilnehmer des PACE-Trials wurden gezielt beeinflusst. Vor dem Start des Trials erhielten sie Informationen, dass «CBT eine wirksame und sichere Behandlung ist» und dass «die meisten Menschen mit CFS/ME durch GET entweder 'viel besser' oder sehr viel besser' fühlten.»
3/22
Read 26 tweets
Regarding this thread, there is one last thing that I want to share:

I am deeply grateful to all the people who have been trying to get the message about how a lot of ppl have been treated during the pandemic out.

(In English this time because this isn't just about Sweden)

>>
I feel ashamed for not supporting you more.

The reason for my silence is that I have ME, and in 2016, I started to dig into the PACE trial.

It was a horrible thing that unrolled.
I wrote a couple of texts about it, called (roughly translated) "Moods and (un)science".

You can find the summary at pacegranskaren.wordpress.com/2016/09/30/sin…
Read 8 tweets
Heres one for my #pwME #MECFS #LongCovid people. When confronted with the constructed image of Wessely as too decorated to be wrong, remember this guy...

"Malaria Therapy [was] the 20th century practice of deliberately injecting patients in asylums with malaria to induce

1/3
fevers and convulsions which were believed to then cure the patient of madness. This therapy earned Dr Julius Wagner-Jauregg a Nobel Prize and this practice continued into the 1930's according to Stetfer and Watson 2016."

Extract from Sexy But Psycho by @DrJessTaylor

2/3
Confirmed it here: en.wikipedia.org/wiki/Julius_Wa…

So he literally won a Nobel prize for his cruelty (first time the prize for Medicine had ever gone to a Psychiatrist too) but his work was discredited & abandoned later.

#PACETrial wasn't even close to that lauded. We can do it.

3/3
Read 4 tweets
"In Britain, psychiatrists spent over a decade painting the disease as psychosomatic, going so far as to tamper with data in a major clinical trial published in The Lancet" #mecfs #pacetrial
tinyurl.com/3ym6b93a
"Which falsely stated behavioural therapy and a gradual increase in exercise, improved symptoms.

It took activists years of campaigning to have the trial discredited, delaying efforts to research the true cause of the disease"
"In Australia, general practitioners look to guidance issued by the Royal Australian College of Physicians (#RACP) to treat and manage their patients. The RACP clinical guidelines on #MECFS haven’t been updated in 20 years"
Read 9 tweets
Trigger warning- Will try keep this short. Uncovering the scale of medical gaslighting and corporate corruption. Who teaches our doctors to dismiss medically unexplained symptoms as hysteria?

Lynn Turner- MUS management PowerPoint, Kings College London ImageImageImage
She also developed the GAS-light model as way of determining which treatments were worth trialling ie cost effectiveness - gauging effectiveness based on patient set goals for graded assessment. If we set the goals, its not on them if the treatments aren't effective, it's on us. ImageImage
Michael Sharpe is a psychiatrist&an author of the fraudulent #PACETrial. He does consulting work for insurance companies & advises them that #ME is a mental health disorder. Here he consulting for Swiss Re, classifying #LC as 'health anxiety'-
Read 11 tweets
[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
Not sure why charities are asking patients to support the publication of the NICE #MECFS guideline update when the final version hasn’t been made available to view to see if stakeholder comments were included and what changes if any were made . The draft guideline is diabolical!
Thread 👇 the NICE #MECFS guideline update/replacement is a sham - more of the same contraindicated behavioural rehabilitation
Thread 👇questioning independent guideline evaluation ,and IAPT expansion , part of the Five Year Forward View ,and the commissioning of “NICE” guideline development to Royal Collage Collaboration Centers
#MECFS update
Read 18 tweets
@postersandme @keithgeraghty Energy management is Activity Management rebranded as Pacing #MEinterventions

Note analeptic anaerobic energy management by @4Workwell is not mentioned by name or pacing .

Nor is #2dayCPET mentioned in identifying PEM in making diagnosis and contraindicated aerobic exertion
@postersandme @keithgeraghty @4Workwell #MECFS NICE guide update rebranded Activity Management ( recommended in the previous guideline due to similarities with GET and includes all activity types & had no definition or evidence bace ) , as “Energy Management” .Claiming it achieves stabilisation & Activity tolerance !
@postersandme @keithgeraghty @4Workwell They been providing “activity management” already at specialist behavioural services

Maybe they created a stink pausing the publication so that patients demand it’s published,to show that patients support the guideline ?

There should be a round table as this is just rebranding
Read 37 tweets
@postersandme What specialist knowledge & approach do dieticians & paediatricians have ? A specialist interest in medically unexplained symptoms behavioural approach 2 CFS ? That patients being referred 2 by NICE guides .What evidence used 4“supportive” CBT by specialist in CBT for MECFS ?
@postersandme NICE #MECFS guide replacement mentions “supportive” CBT does not “assume” people have abnormal beliefs and behaviour as underlying cause (as is the CBT model for specialist CBT for MECFS from a behavioural perspective )

Yet it still retains it …[1/3]
@keithgeraghty Image
@postersandme @keithgeraghty Yet it still retains the same behavioural BPS mind body perception distress approach and principles of management , to increase activity + reduce disability under guise of well-being and quality of life being: [1/2]
Read 10 tweets
The chronic collaboration has been created in response to the recent refusal of NICE to publish the much awaited ME/CFS guideline. Many #pwME would like to protest this decision along with the years of medical neglect & mistreatment they have faced 1/5
meaction.net/2021/08/19/sig…
Due to the psychologisation of #MECFS after the scientifically flawed #PACEtrial, part funded by the #DWP btw. Not only has this caused medical abuse in patients with #ME (#MAIMES) its having a huge impact on the treatment & further investment of many other patient groups 2/5
From people living with #ChronicPain & #MUS to #Fibromyalgia & #LongCovid. There are literally #MillionsMissing globally & thousands of #Disabled #pwME & #SevereME in the UK who are desperate for their voices to be heard, represented, just taken seriously in many cases 3/5
Read 5 tweets
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
@JujuliaGrace @EveryDoctorUK Please include scrapping the abuse of the biospychosocial model in integrated and personalised care for all patients influenced by insurance industry
@JujuliaGrace @EveryDoctorUK Abuse of this model of disability & rehab is a political choice & predominate evidence is the #pacetrial
misrepresented its data . Reduces costs 4 private joint NHS / care providers by restricting access & utilisation via trapping patients in clinical pathways like #IAPTLTCMUS
@JujuliaGrace @EveryDoctorUK Both NHS transformation & welfare reform utilise the abuse of the biospychosocial model Some of which is outlined in the coalition five year forward view . With NHS and DWP working together Mo Stuart written extensively to parliament regards use in welfare mostewartresearch.co.uk
Read 6 tweets
@Hltonjames A lot on reform of the NHS is on Kings Fund website

They expanded IAPT 2 longterm conditions & medically unexplained symptoms #IAPTLTCMUS

To reduce access & utilisation 4 joint private providers of health & social care - (STPs)
@Hltonjames Predominate reseach for IAPT expansion “

Is the misleading research at the heart of disability cuts”- and abuse of the biospychosocial model of disability and rehabilitation - The #pacetrial

See @CBTWatch , Book CBT Tsunami by Farhad Dalal . Cash not Care by Mo Stuart
@Hltonjames @CBTWatch It was a political choice 2 utilise the abuse of the biospychosocial model in integrated & personalised care

To create behavioural management pathways 2 reduce access & utilisation 2 reduce “NHS” provider , welfare , & insurance costs
Read 12 tweets
He's right.

It shouldn't take an Oxford educated, white, middle aged, privileged male pillar of the scientific press to get ill before any patient gets taken seriously, but now that @GeorgeMonbiot has arrived, perhaps at last, we can DO SCIENCE on #MECFS

When we DID SCIENCE (in the rest of the world in the last 2 decades, just not in England) we discovered biomarkers. We discovered findable, physical signs, that show measurable changes are present in multiple systems.

Yes. ME has been found. You didn't know that? Ask why not?
To be explicitly clear here, so you can be in no doubt, the words "immunological, cellular and neurological abnormalities" here tell you what has been found.

Biomarkers.

Broken things that show up if you look in the right places.

Immune system broken things. Cells. Nerves.
Read 17 tweets
[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
[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
1) Virtual conference on Supporting Patients Living with #longCovid: healthcareconferencesuk.co.uk/conferences-ma…

Wed 9 December

Speakers include: Dr Clare Gerada, Prof Lynne Turner-Stokes and Professor Trudie Chalder. All prominent advocates of graded exercise therapy (GET) and CBT for ME/CFS.
2) The new NICE draft Guideline on ME/CFS states that patients should not be given GET or CBT as a treatment: nice.org.uk/guidance/GID-N…

#LongHaulers may question whether those who have promoted these treatments for ME should be advising on #LongCovid.
3) Highly recommended reading for anyone with #LongCovid – and anyone with an interest in standards in clinical research.
Read 6 tweets
Why are the #MECFS patient community concerned for #LongHaulers who might try to exercise themselves back to health?

Watch these two videos that look at the evidence against Graded Exercise Therapy for the often post-viral ME/CFS.

#LongCovid #PACEtrial

dialogues-mecfs.co.uk/films/graded-e…
Independent re-analysis of the the largest trial that claims benefits of GET and CBT.

"The modest treatment effects obtained on self-report measures in the PACE trial do not exceed what could be reasonably accounted for by participant reporting biases."

bmcpsychology.biomedcentral.com/articles/10.11…
A 2017 analysis of patient surveys by @keithgeraghty shows GET is rated negatively by the majority of patients (54%–74%), while pacing "is the most favoured treatment with the lowest negative response rate and the highest reported benefit (44%–82%)."

journals.sagepub.com/doi/10.1177/13…
Read 6 tweets
1/17
To @guardian,
You’ve got it very wrong this time. In publishing this tired, self-justifying defence of the #PACEtrial—and predictable attacks on patients and others who question this research—you are being used by the PACE authors in a last-ditch…

theguardian.com/society/2019/j…
2/17
…attempt to prevent their reputations from being washed away by the rising tide of research showing the many flaws in theirs. Why are you giving a platform to a promoter of discredited and harmful treatments for some of the sickest people in the world? Are you unaware…
3/17
…that the #PACEtrial is now used in biostatistics courses as a case study in how not to design a medical trial? PACE is not a story about harassment of scientists. It’s a story about junk science and the replication crisis in psychology. PACE is eminence-based not…
Read 17 tweets
@guardian As an antidote to Andrew Anthony's unwelcome opinion piece rehashing Prof Sharpe's vindictive fabrications about ME/ME patients, your readers may like to read some actual evidence-based biomedical research about the illness. 1/
jamanetwork.com/journals/jama/… #pwME #MEcfs
@guardian This longer paper delves into more recent biomedical research, giving readers an insight into the biological basis of ME/CFS - and making Prof Sharpe's unsubstantiated hypothesis about the illness sound rather silly. 2/ #pwME #MEcfs #MyalgicE
mdpi.com/2075-4418/9/3/…
@guardian And this research summary from @MEActNet reviews the most current and important research into ME/CFS of the past 10 years. NB Prof Sharpe's research - notably the flawed and widely discredited PACE Trial - aren't included. 3/ #pwME #MEcfs
meaction.net/2019/06/12/mea…
Read 27 tweets

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