Discover and read the best of Twitter Threads about #get

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🧵 It’s #DisabilityPrideMonth and we’re seeing another wave of COVID globally, so here’s a list of reasons why you should watch the Netflix documentary ‘Unrest’ and educate yourself on #MECFS and #LongCovid
ME/CFS, also known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a multisystem, physical disease that can be identified by its cardinal symptom, PEM (Post Exertional Malaise), in which after activity, the individual experiences a delayed worsening of symptoms. 1/
These symptoms are debilitating and leaves sufferers after activity, even on the mild end of the spectrum, with migraines, light/noise sensitivity, vertigo, nausea, vision changes, widespread muscle/joint pain, weakness, orthostatic intolerance and at its worst, paralysis. 2/
Read 14 tweets
[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
🚨Attention medics.🚨 An important thread on #MyalgicEncephalomyelitis Forget what you think you know. It is not psychosomatic. These pts are desperately physically unwell, likely with a chronic infection. #MedTwitter #MedEd #TeamGP 🧵 1/
Bedbound & housebound, they make up #millionsmissing. They maybe out of sight, but they are never far from my mind.

Neglect of #ME is the biggest medical scandal of the 21st century. The medical community will soon look back on their treatment of #pwME with horror & shame./2
But some Drs maybe forgiven for their ignorance. #ME fails to feature on the UK medical curriculum and as such, awareness & understanding is low.

The condition has also been highly stigmatised & erroneously - but deliberately - labelled psychological./3
Read 22 tweets
"In Australia, the #RACGP continues to recommend that GPs prescribe #GET and #CBT for ME. Fatigue clinics continue to operate, risking continued harm to ME patients and people with other post-viral illnesses, including #LongCovid" #mecfs tinyurl.com/4x2eshha
"What I didn’t know at the time, was that ME patients were fighting to interrogate the notion that #GET and #CBT – were effective.
"It turns out, a group of psychiatrists in the UK had altered the evidence in the major scientific study advocating the use of GET and CBT for ME, changing the thresholds for what counted as recovery."
Read 4 tweets
Graded Exercise Therapy (#GET), once recommended as "treatment" for patients with #MECFS, has been found in multiple studies to instead cause patients *significant* harm. Thread ⬇️ graphics by Body Politic Vice Pres. Lauren Nichols: instagram.com/p/CKl50EyhT84/
In 1989 an erroneous & damaging paper about a “new approach” to chronic fatigue emerged in a British medical journal. A hand wearing a glove holds a large trash bag. Flies swarm
In it, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) was dismissed as psychological. News flash: it isn’t. Not even remotely. It stated that the pain patients felt after exercising was in their heads and that if they exercised enough, their symptoms would subside.
Read 10 tweets
I lead the #SIRENStudy and have been studying the impact of prior infection with COVID-19 and COVID-19 vaccinations on immunity for more than 18 months. We have published multiple studies with collaborators. The most recent preprint is available here medrxiv.org/content/10.110… 1/6
In this pre-print, which is under peer review, we demonstrate that 2 doses of vaccination on top of prior of infection, significantly reduces both asymptomatic & symptomatic infection compared to infection alone - Table 3 - the longer since primary infection the more effect 2/6
This is on top of the evidence provided in the original paper showing immunity 81-87% immunity with the original strains and early alpha period.... but just as immunity wanes from vaccines so it does from primary infection. 3/6
pubmed.ncbi.nlm.nih.gov/33844963/
Read 6 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
@RcgpFaculties @MartinRCGP @AoMRC @HelenStokesLam @RCSnews
#notinmyname
This statement supposedly from RCs does not represent my views as a Clinical Advisor to the @rcgp. I find it utterly inappropriate for it to have been released after the conclusion of the @NICEComms process.
In fact, I'm embarrassed on behalf of my whole profession, who are allowing a small but vocal minority with vested interests (protecting their own careers) to speak on our behalf. In the context of #LongCovid, many more of us now know the truth about #MECFS.
@doctorasadkhan
#MECFS and #LongCovid are not going to be cured by some exercise & CBT, no matter how loudly those who offer them to unsuspecting patients scream and throw their toys around. If you think you've cured someone with these treatments MAYBE YOUR PATIENT LIED TO GET AWAY FROM YOU!
Read 5 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
Nun also ein erster Einblick in dieses psychologische "Fachbuch" aus dem Jahr 2005. Selbstredend wird dort ein sog. kognitiv-behaviorales Modell unterstellt, das mit aktuellen biomedizinischen Erkenntnissen über #MECFS unvereinbar ist.
Die mittlerweile weltweit als Kardinalsymptom von #MECFS anerkannte und auch objektivierbare #PEM ("Post-Exertional Malaise") wird in dem Werk zwar nicht beim Namen genannt, aber immerhin als ganz typisches Symptom von Betroffenen umschrieben.
Als "evidenzbasierte" Therapie des "CFS" wird "allmählicher Aktivitätsaufbau (AAA)" empfohlen - also die altbekannte #GET (graded exercise therapy).

Die Autoren sehen dabei #PEM lediglich als Konsequenz "persistierender maladaptiver Bewältigungsmuster" der Betroffenen an.
Read 24 tweets
#longcovid recovery
A thread.
Whilst I write this I'm painfully aware of so many people with #longcovid who are far from recovery but at the same time I want to give hope.
Last September I lost my job as I was too ill to work due to #LongCovid
I was breathless, tachycardic, full of brain fog, and had tinnitus and myalgia. I had pyrexia daily and awful post exertional malaise that would hit every time I tried to do anything.
I went onto discover many of my symptoms were related to the #PoTS I had developed as a consequence of my #covid19 infection.
I started medication and luckily it had a good effect on me, allowing me to slowly build myself up to go back to work as a locum GP.
Read 13 tweets
@NICEComms have ‘paused’ publication of #MECFS guidelines due tomorrow (already delay since April)
There must be real concern that’s due to expected withdrawal of #GET & #CBT, shown in evidence reanalysis to be ineffective & harmful by patient report 1/

nice.org.uk/news/article/n…
@NICEComms is held as the arbiter of evidence based medicine & consensus.
I fear that in this case, Eminence based medicine has instead prevailed.
Can it really be the case that @NICEComms can be influenced by reputation, power & connections, to go against science, evidence? 2/
#ForwardME a group of #ME #MECFS charities, professional bodies & services have released the following statement expressing their concern 3/
Read 6 tweets
1. It should not be that people end up traumatised by visiting Drs; that they put off going because of how they’ve been disbelieved, dismissed,treated as hysterical, or even yelled at. I know many of you with #MyalgicEncephalomyelitis can relate to what I’m saying.

#MedTwitter
2. I’ve grown to dread every visit to Drs & specialists. Not one of them has ever been truly interested in acknowledging that I have #ME, or taken it into account when ‘treating’ me. I use that word loosely, cos unless they acknowledge it,how can they fully treat me?

#MedTwitter
3. I’ve had #MyalgicE for 25 yrs, so that’s a sad indictment on the medical profession & governments who’ve ignored & maligned us for decades. Research funding has been abysmal, worldwide. Because it’s a common thread amongst people with #ME, I know it’s widespread.

#MedTwitter
Read 7 tweets
We have been staunch opponents of graded exercise therapy (#GET) as a treatment for #pwME and are thrilled that our research played a role in removing this harmful treatment from #NICE guidelines. Below we highlight some of our efforts to #stopGET ➡️ thread 1/ Image
@4Workwell collaborated with @DialoguesMECFS to develop videos explaining energy systems and why graded exercise therapy is damaging #pwME. Please see our latest pacing video - we caution against using heart rate formulas designed for healthy people. 2/ dialogues-mecfs.co.uk/films/pacing/
In 2018, @4Workwell wrote a letter for patients to share with their #healthcare providers explaining the harms of graded exercise therapy for #pwME - 3/ workwellfoundation.org/wp-content/upl…
Read 6 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
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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
18 myths & misconceptions of Post-Exertional Malaise #PEM in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

#PEM (aka PENE, "flare" or “crash”) is seriously debilitating symptom caused by exercise

#SickNotWeak #SickNotTired #pwME #chronicillness #medtwitter #MedEd
1. #PEM is just tiredness

No

#pwME experience <pathological> fatigue after #exercise which can be long-lasting and includes debilitating fatigue, flu-like symptoms, cognitive impairment, #sleep disturbance

@PNASNews #MECFS #MyalgicE #MedEd #medtwitter
pnas.org/content/114/6/…
2. #PEM is not a real

No

“there exists no medical condition.. where exertion.. causes #immune/ inflammatory-related symptoms like sore throat, tender lymph nodes, or flu-like feelings, yet 60%.. of.. [#pwME].. reported these symptoms”

@PLOSONE #MECFS
dx.plos.org/10.1371/journa…
Read 20 tweets

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