Discover and read the best of Twitter Threads about #MyalgicE

Most recents (24)

🧵 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?

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."

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."

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».
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».
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.»
Read 26 tweets
@usabilityliz @PaulGarnerWoof @ManvBrain @NYMag Looking back over my illness, time & again, my progress towards recovery has relied on me standing up for myself.

British medicine removed my food and shelter. That was the treatment for M.E.

I feel @davidtuller1 left me to suffer abuse for years. And this sums up M.E activism.
@usabilityliz @PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 I cannot report suicidal thoughts to the British M.E Association.

I cannot report threats, and years and years of abuse.
@usabilityliz @PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 The lives of M.E patients have been reduced to that of a football, kicked back and forth between doctors and activists who care more about the game than about the suffering.
Read 33 tweets
Some summary info #mecfs #pwME

Treatments that haven't worked for me: LDN, IVIG, Valtrex, Mestinon, ketamine, Diamox, Adderall, memantine/amantadine, cromolyn, various allergy meds, prednisone, Plaquenil, L-dopa, aspirin, Xifaxin, and about a million vitamins and supplements.
(Oh, also Florinef, and B12 injections, probiotics, prebiotics...)

Treatments that have: Abilify, ketotifen, Singulair, maybe Deplin.

Diagnoses: MECFS, MCAS, SIBO, dysautonomia (autonomic testing abnormalities), preload failure (Systrom's exercise test), some other abnormal
labwork. Connective tissue issues: 4-5/9 Beighton, TMJ, hip dysplasia at birth, but no EDS or genetic markers (Dr. Milunsky, geneticist). CCI (Dr. Patel, etc.), SFN.

Doctors: Dr. Bonilla @ Stanford, Dr. Chheda @ CCD, Dr. Felsenstein, Dr. Systrom, and Dr. Farhad @ MGH/Brigham...
Read 19 tweets
This excellent report by @kathrynsbach is very sobering. Every country, especially those who have let #Covid rip, can expect major economic damage because of #LongCovid. But as a survivor of a historical epidemic that triggered mass #MECFS I think there's plenty more to come. A🧵
2/ What governments worldwide don't yet seem to realise is that - even if the pandemic ends tomorrow, and not a single extra person falls victim to #LongCovid henceforth - the damage to people's lives & entire economies will likely snowball significantly over time.
3/ They don't realise this yet because governments worldwide have collectively ignored #MECFS etc for decades. They've failed to learn from previous viral epidemics that have triggered long-term disability, because they've failed to track adverse health outcomes longitudinally.
Read 25 tweets
Some extracts from “The politics underpinning the neglect of people with ME/#CFS” which summarises her paper “Towards a critical psychology of #chronicfatiguesyndrome: #biopsychosocial narratives & UK welfare reform” by @JoElizaHunt…

#MEcfs #PwME

“The [#biopsychosocial] model has been used as psychosocial model, to re-frame chronic health conditions (particularly those surrounded by medical controversy or uncertainty) into psychosocial entities, allegedly amenable to psychosocial healthcare interventions (contd)”

“(Contd) and thus to ‘recovery’ and re-entry into the labour market. Such health conditions could thus be largely exempted from welfare provision, private disability insurance protection & on-going biomedical care, reducing state expenditure in these areas (contd)”
#MEcfs #CFS
Read 17 tweets
Press release for New Zealand paper:

“New research provides insight into Long COVID and ME: Researchers have uncovered how post-viral fatigue syndromes, including #LongCOVID, become life-changing diseases & why patients suffer frequent relapses”

#MEcfs #CFS #PwME #PwLC


“Arising commonly from a viral infection, #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (#ME/#CFS), is known to cause brain-centered symptoms of neuroinflammation, loss of homeostasis, brain
fog, lack of refreshing sleep, & poor response to even small stresses”


#LongCOVID has similar effects on people and is believed to also be
caused by neuroinflammation.

Lead author Emeritus Professor Warren Tate, of the University of Otago's Department of Biochemistry, says how these debilitating brain effects develop is poorly understood”
Read 14 tweets
“Scottish Government backs NICE guideline”…

“In December 2021, the Scottish Government commissioned Blake Stevenson Ltd to engage with stakeholders…to gather
their views on the NICE guideline on #ME/#CFS

#MEcfs #PwME #ChronicFatigueSyndrome


“For this independent stakeholder review, a total of 37 stakeholders contributed. This consisted of 14 clinicians, 10 third sector #ME/#CFS organisations/academics & 13 people with lived experience of #MECFS,

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME

“and a further 93 people responded following an online survey [on the 2021 NICE #MECFS guidelines] that was
distributed to a wider stakeholder group. The response from the majority
of stakeholders was overwhelmingly positive”

#NeuroME #CFSME #MyalgicEncephalomyelitis
Read 5 tweets
It's 3rd anniversary of our paper
"Monitoring treatment harm in #MyalgicEncephalomyelitis / #CFS: A freedom-of-information study of NHS specialist centres in England"…
Hopefully it will influence, among other things, #LongCovid clinics


Summary article for laypeople:
"Trial By Error: NHS ME/CFS Clinics Lax on Treatment Harms, Study Finds" (June 2019)…

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

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… what we submitted to the journal which is something we own the copyright on.

#MEcfs #CFS
Read 4 tweets
New Zealand:
“Scientists studying potential link between [#ChronicFatigueSyndrome] & #longCovid struggle for funding”…

On Prof Tate & his research team. He seems like the sort of scientist we really want in field.

#MEcfs #PwME #MyalgicE #CFS #CFSME

“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

“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
A story about ME.

In the late winter of 2004, I caught a nasty virus—perhaps SARS-CoV, perhaps not—and since then my life has been a series of shrinking options and forced limits. Take too many steps? Bed. Cook a meal? Bed. Mental stress? Bed. Hangout? Bed. Enjoy the beach? Bed.
In 2011, I was diagnosed with Myalgic Encencephalomyelitis—ME—but not before the push-crash cycle left me unable to work, unable to lead a normal life. PEM, a racing pulse, breathlessness, sleep disorders, OI, heat/cold/sound/light sensitivities—sounds fun, right?!
But interestingly, elevated liver enzyme levels were some of the first diagnostic results to raise a red flag after infection. The levels have bounced around, but have remained too high since my fateful trip to Europe in 2004. In early 2017, I was also diagnosed with NAFLD.
Read 13 tweets
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



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 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

Read 6 tweets
“ME/CFS: What Psychiatrists & Psychologists need to know” by @DoctorsWithME (March 2022)…

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #NeuroME #MEcfs #CFS #PwME #CFSME

#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
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
Not such good news for #pwME in the Netherlands?

Dutch patients should no longer expect that future Dutch guidance for #MEcfs will be based on the new NICE guideline.


#MyalgicE #MEcfs #MillionsMissing
In December 2020, the Dutch Care Institute (Zorginstituut Nederland) had announced it would work towards a new "quality standard"/guideline for care for people with #MEcfs. In that announcement it stated that the British NICE guidelines could possibly serve as
the basis for those guidelines.

Read 10 tweets
The team of German #MEcfs petition #SIGNforMECFS released a statement on 24 Feb., replying to the submissions made by undersecretary of state Sabine Dittmar on behalf of the German government during the public hearing at the German parliament.
#pwME #MEcfs
Those submissions were perceived as inappropriate and ill-prepared by many #pwME who followed the hearing online or watched the recording.

Since many of the statements by Dittmar are standard fare,


#pwME #MyalgicE #MEcfs #LongCovid
it is instructive to read the careful blow-by-blow responses of the #SIGNforMECFS team, at present only available in German here:…
and (as a pdf) here:…


#pwME #MyalgicE #MEcfs #LongCovid
Read 26 tweets
14 mths Long Covid RHR 110 bpm ^ to 147 bpm *just* on standing. Still experiencing hypnagogic auditory hallucinations. There is an ongoing pathological process; it’s not rehabilitation patients need. #TreatLongCovid #pwLC #pwME #MedTwitter #MedEd #TeamGP
For anyone who thinks I’m exaggerating. Postural Orthostatic Tachycardia Syndrome (POTS) everybody:
Medics, if you haven’t heard of POTS pls educate yourselves. Many patients with Long Covid have a high resting HR (for the majority this is due to dysautomnia; a faulty autonomic nervous system, *not* anxiety). Some will also have POTs (i.e. ^ tachycardia on standing), as shown
Read 18 tweets
We’ve raised over $22,000/£16,000 for our End of Year Giving Campaign! Thank you! 🧵

Time to reveal Staff Characters!
Adriane: The Press Scribe
Ben: The Huntsman of Agencies
Erin: The Valkyrie of Programs & Campaigns
Holly: The Town Crier of Social Media
Jaime: The Wizard of Research & Medical Education
Julia: The Mystical Fairy of Fundraising
Laurie: The Manager-ing Elf
Steven: The Court Jester of Communications

We have reached our 2nd fundraising level, but we must keep driving forward #MEAction’s End of Year Giving Adventure!
The Giving Adventure is a fun way to raise funds, but it also provides us an opportunity to connect as a community--which is at the heart of everything we do at #MEAction! So join in & share a tweet and/or picture about what your fantasy character would be AND tag @MEActNet.
Read 5 tweets
We need Your support in the fight against #MECFS!

Please, Hit the RETWEET/SHARE Button! 🙏 Let's GO Viral!

SIGN the petition #SIGNforMECFS: Healthcare, Research, Support✍️

➡️ ⬅️
➡️ ⬅️(use in-browser translator)

Anybody may sign, regardless of age, country of residence or nationality!

Detailed step-by-step instructions in English on how to sign:

Petition on the portal of the German Bundestag (in German, use in-browser translator):

#MECFS is a debilitating illness characterised by worsening of symptoms after minimal physical or mental exertion, cognitive impairment, prolonged fatigue and chronic pain.

60% are unable to work, 25% are housebound, severe cases are bedridden.

There is no cure.

Read 22 tweets
"#MyalgicEncephalomyelitis/#ChronicFatigueSyndrome: Essentials of Diagnosis & Management" (from US ME/#CFS Clinician Coalition)…

"21 clinicians specializing in ME/CFS convened to discuss best clinical practices for adults affected by #MECFS"

"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
"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
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

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

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

Read 16 tweets
The strength it takes to live with #SevereME for decades defies understanding

Let alone when it begins in childhood, preemptively deleting the opportunities and joys of a normal life

Left having to fight for yourself in the midst of debilitating illness with little to no help
And then most healthy people dare to say #severeME is fake/malingering or too much complaining, then to deny it or give BS advice?

Please, feel free to get in the shoes of a #pwME for a few years. The #millionsmissing have left plenty of them on the roadside for you to try.
On the #SevereME menu: at a bare minimum, a dozen symptoms that leave you bedbound 24/7

Unable to tolerate light, sound, touch, smells, to think, speak and move

Requiring assistance to eat, shower, use the toilet

The smallest thing you do flares your symptoms for days or weeks
Read 17 tweets
🧵1/ Every day this month I'll add a different piece of ME/CFS biomedical research to this tweet so that by the end of #MEAwarenessMonth there'll be a nice long thread of biomedical research papers to keep or share. First up:
…… #MECFS #pwME
🧵2/ 'Myalgic encephalomyelitis/chronic fatigue syndrome patients exhibit altered T cell metabolism and cytokine associations', Maureen R. Hanson et al #MEAwarenessMonth #pwME #MECFS #research #MedTwitter #MedEd…
🧵3/ 'Distinct plasma immune signatures in ME/CFS are present early in the course of illness', Mady Hornig et al #MEAwarenessMonth #pwME #MECFS #researchpaper #MedTwitter…
Read 28 tweets
It is with a heavy heart that we learned that Faustine Nogherotto @faustineno passed away yesterday.

Faustine, an upcoming singer, saw her rise brutally stopped by very severe myalgic encephalomyelitis and Sjögren's.

We are torn and reeling from her loss

#pwME #MillionsMissing Image
Faustine never was able to receive proper medical care for her severe ME, like many thousands in the same situation in France.

She advocated for #pwME until she couldn't anymore. Here is her appearance on a national singing TV show (2016) @Nagui ⬇️
We all felt close to Faustine, and we are immensely grateful for her advocacy.

This moment of grieving is difficult. Our sorrow is mixed with anger. The anger that in France, people with very severe ME are left on their own, the disease is considered psychosomatic, and
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.

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?

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.

Read 7 tweets

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