Discover and read the best of Twitter Threads about #myalgicencephalomyelitis

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In Australia in the 80s #MyalgicEncephalomyelitis (or 'Post-viral syndrome') was being investigated as a disease causing immune dysfunction.


Sydney Morning Herald, 17 June 1987


Thanks @ABrokenBattery for digging this up! Image
A disease of the immune system may be responsible for symptoms once attributed simply to hypochondria. PETER QUIDDINGTON reports
A STRANGE affliction of the human immune system - not unlike a mild form of AIDS is thought to affect thousands of people in NSW, though most people do not know what they suffer from. Nor, in most cases, do their doctors. There is no simple diagnostic test for the disease,
Read 23 tweets
@thepollenberry @liverpoolpost @jlaverick99 @PaulGarnerWoof ☑️

Garner had post viral fatigue in March’20 and was scuba diving abroad a few months later.

Short #LongCovid is not #MyalgicEncephalomyelitis

Garner is a #Gaslighting troll
A disgrace to #academia
A charlatan

@b_m_hughes  Garner had post viral fati...
@thepollenberry @liverpoolpost @jlaverick99 @PaulGarnerWoof @keithgeraghty @davidtuller1 @b_m_hughes ☑️

Garner is a confused character who fell under the influence of Professor Sir Simon Wesley

”It is only human for doctors to view the public as foolish, uncomprehending, hysterical or malingering”…
Read 3 tweets
Had someone message me to say that they cured themselves with exercise so they are happy to see these studies.

No. They had chronic fatigue.

Not to be confused with what I and millions of others have, a debilitating multisystem illness #MyalgicEncephalomyelitis or #MECFS.

One is a symptom of MANY conditions. (Chronic fatigue.)

One is a serious and complex multisystem illness that leaves us in a terrible state with up to 100+ symptoms and several comorbidities. (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.)

The name CFS causes confusion regularly. 😞

It leads to more confusion (and significant harm) when researchers new to #MECFS don’t understand the difference and include people with only the *symptom* of chronic fatigue in their studies.

Read 30 tweets
Do ppl understand that ppl die from #MECFS?
Common cause is starvation as the stomach shuts down.

We're now seeing trend amongst #LongCovid patients; where many of those severely ill are seeing huge rapid weight loss. I'm begging parents to take action early if your child 1)
Has the signs of #LongCovidKids.
Majority of ppl who become severe do not start out that way. Rather they steadily decline.
Common cause of decline is pushing through PEM.This is why we talk about the importance of early diagnosis. Promise you as a parent if your child becomes 2)
Severely ill w LC, you'll need to know you've done everything to care for them from the start. There are many parents out there w sick children who
a) dont know its LC because they aren't educated about LC
b) are in denial.
Those children likely to become more sick as they 3)
Read 8 tweets
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults" (Dec 2022)

2 of 4 authors are MDs


I thought this was very good. Will post extracts.
#MEcfs #CFS #MedEd
1/ Screenshot of abstract

My overview:

Paper has lots of useful points & also helpful overall to show how the NICE guidelines for ME/CFS have changed dramatically in the UK from the 2007 version, with the updated approach being much more sympathetic regarding helping patients.

#MyalgicE #PwME #CFSME

“The new NICE guideline for ME/CFS…recognis[es] the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test.”

#mecfs #cfs #neurome #cfsme #myalgice #pwme
Read 26 tweets
A P.A. doing intake recently informed me ME isn’t an accurate name and suggested I shouldn’t be using it, least of all in a medical office. Shortly after admitting he’d heard of CFS, but not ME/CFS. 🧵
His argument is problematic, as I responded, because ME/CFS is the widely agreed upon name, used in the ICD, by CDC and others. It’s also not the only name poorly reflective of its distinctive pathologies (though those get a pass because, well, we’re used to them).
But the fact that he felt the need to drive it at all is insane. Patients should never be belittled when they relay diagnoses, however seemingly justified in the moment. What may feel like an intellectual exercise for the provider may feel like life and death for the patient.
Read 9 tweets
Some articles on ME/CFS are ignorant, but @nataliesurely‘s @newrepublic piece last month is so shockingly bad, so suffused with CBT/GET Brigade rhetoric that it’s hard not to believe it’s an exercise in bad faith. 1/7
The familiar tropes are all there, from the suggestion patients disparage mental health disorders and turn to illness because it gives them identity to misleading descriptions of what PACE offers and represents. 2/7
One line particularly stuck in my craw, though: “Considering PACE’s ultimately rather mundane finding, the tenacity of the response [from pts] is quite surprising.” The line implies unreasoned outrage on the part of patients. 3/7
Read 8 tweets
My friends care if I live or die
If you don't and you show me that we are not friends and I am not going to waste my energy pretending that we are anymore.
Which is pretty much why I deleted FB.
I didn't really add people I didn't know and after the way, everyone has behaved and treated the vulnerable for the past 3 years I am looking forward to never seeing those people again.
I have #LongCovid the kind that comes with #MyalgicEncephalomyelitis so my energy is nonexistent and precious.
I'm not saving any of it to be polite to people who do not give an f if they kill me.
Instead, I reserve that energy to support my community.
Read 4 tweets
Them: I won’t wear a mask, I’m not living in fear!

Me: do you wear a seatbelt in a car? Are you living in fear?

Them: that’s different

Me: do you avoid eating undercooked chicken? Is that living in fear?

Them …

Me: How about washing your hands after you poop?
Them: they’re both just basic hygiene. I don’t want to give myself food poising or E.coli.

Me: … 👀

Them: …

Me: you don’t see it do you…

Them: masks are different, they’re muzzles only sheeple wear

Me: enjoy your winter of viral infections 👋🏻
N95/KN95s reduce the odds of infection with #COVID19 by 83% compared to wearing no masks.

Cloth masks & surgical masks were of course less effective but better than nothing.

Read 6 tweets
@JolentaG @ADANational @ACLU @Disabilitygov @DRNY_org @CDRNYS @ADANational @ACLU @CDRNYS @CID_NY @DEJCollab @DRNY_org @Disabilitygov that’s what I’m wondering!

Segregation is supposed to be over. Even disabled people were legally desegregated by Ruth Bader Ginsburg et al writing majority opinion in 1999. Right?!
@JolentaG @ADANational @ACLU @Disabilitygov @DRNY_org @CDRNYS @CID_NY @DEJCollab How is it remotely legal, then, for @CDCgov to deliberately make all public spaces a grave threat to our lives/health?

To force us to choose between “living life”/existing in public or literally staying alive?

Purging us from society through death or indefinite isolation
@JolentaG @ADANational @ACLU @Disabilitygov @DRNY_org @CDRNYS @CID_NY @DEJCollab @CDCgov IS certainly segregation!

It’s also a basic infringement of the ADA’s accessibility mandate in public spaces. It’s also reminiscent of the Ugly Laws @Imani_Barbarin taught me about!

Is it because they assume disabled folks are “not doing so well anyway?” 🧐
Read 17 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
12-page report on "International Conference
ME/#CFS & #LongCOVID – Treatment & Rehabilitation"…

Conference website:…

I found the report good though I'd be surprised if some annoying stuff hadn't been said by someone


"[As well as post-exertional malaise] other common symptoms of #LongCOVID & ME/#CFS include fatigue, cognitive difficulties, dysautonomia, reduced tolerance to physical +/or cognitive exertion, brain fog, unrefreshing sleep, pain & immune system symptoms"

#MEcfs #PostCovid

"The presence of orthostatic intolerance and post-exertional malaise/ post-exertional symptom exacerbation (#PEM/#PESE) requires interventions to be modified in view of these diagnoses for rehabilitation to be safe"
Read 7 tweets
🔵Desde nuestra asociación de ámbito nacional, Asociación de Personas con Encefalomielitis Miálgica (PEM),queremos informar de que la enfermedad que representamos NO es un #SíndromeDeSensibilizaciónCentral, es #EncefalomielitisMiálgica,sin más.(Se abre 🧵)
Algun@s también la denominan #SíndromeDeFatigaCrónica, aunque los criterios diagnósticos de Consenso Internacional de 2011 que son los más rigurosos, solo la denominan #EncefalomielitisMiálgica.
Mientras el consenso de clínicos europeos, EUROMENE, ha concluido llamarla EM/SFC mientras la investigación avanza y se decida qué nombre es el que mejor define la enfermedad. Hay más expertos e investigadores que usan esta denominación EM/SFC #EMsfc
Read 12 tweets
Has #pwME or #LongCovid managed to get oxygen therapy at home via the NHS?

#NEISvoid #LongHauler #MyalgicEncephalomyelitis
Why isn’t anyone studying whether home based oxygen therapy can help #pwME or #pwLC?

I see loads of studies of HBOT showing it helps & other studies saying we’re hypoxic. But HBOT studies annoy me because HBOT therapy *is not accessible* for most people! We need home therapy!
“The now retired ME/CFS specialist Dr. Paul Cheney also used to frequently prescribe home oxygen therapy to ME/CFS patients, even as little as 1 hour of treatment per day seemed to be effective” (from… )
Read 5 tweets
“What Is #LongCOVID—and How Are We Going to Solve It? This potentially life-altering post-viral syndrome may have affected as many as 23 million Americans (and counting)”

Contains quite a bit of discussion about #MEcfs…


1/ Image

“We’re starting to gain more understanding of what’s driving #longCOVID & who is most at risk, & the more we understand, the more it will help us get a grip on similar chronic illnesses, like #MECFS, that have been largely ignored for far too long” - @VirusesImmunity

“In those who felt ill from #postCOVID19 syndrome for at least six months, the most common symptoms were fatigue, cognitive dysfunction, & post-exertional malaise (a triad that besets many people with #MECFS), according to the study” of 3762 patients by @patientled

Read 12 tweets
#MECFS never gets easier to accept.

Every Fall/Winter my health declines significantly. In the Spring/Summer, my health improves a bit.

Each year though, my overall baseline declines.

It feels like dying slowly and painfully. Never knowing when your body will just quit.

And no. I’m not depressed or anxious. (Though it would certainly be understandable if I was.)

In fact, I continue to be in awe of myself and my community’s emotional strength in the face of this relentless physical suffering.

Any one of the typical #MyalgicEncephalomyelitis symptoms, turned up to an 8/10 intensity, would be difficult to live with after awhile. It would wear you down.

By the time you get to 3-4 of these symptoms, it’s debilitating.

Imagine getting to 100-200 daily symptoms.

Read 28 tweets
2nd post I’ve seen in 24hrs on this topic.
People who think Labour’s reference to “working PEOPLE” instead of “working class” is not deliberate- think again. Rachel Reeves said it herself, in 2015!
What about sick/disabled? What indeed? #Labour #Vulnerable #Benefits
This lady, who has spoken to @Keir_Starmer on the issue, recognises the issue. There are many people who CANNOT work due to illness or disability, yet we are disparaged along with those who CHOOSE not to work. It is grossly unfair & cruel.
I receive PIP &, as I have a small ill health pension, the severe disability premium part of ESA. I do not receive council tax benefits or help with NHS costs. Frankly, I would 💯 prefer to work; I miss not being able to work; I never chose to get sick!
Read 23 tweets
I have #MyalgicEncephalomyelitis. It’s been 9 days since @MEActNet’s #StillSickStillFighting action + I wanted y’all to have a glimpse of what #PEM is. Post-exertional malaise is the hallmark symptom for #pwME #MECFS, which half of #pwLC #LongCovid have
#NEISvoid (1/18) 9 MEAction Activists block ...
When we push ourselves beyond our energy envelope + don’t #StopRestPace, we end up with #PEM, where we “crash” and get much sicker. (I’m in the front here! We’re used to lying down, but getting up + down, lying on the hot pavement while chanting is really rough for us!) (2/18) MEActivists block the sidew...
So for this action, we prepared. I got good rest Frid-Sun. I was good about using mobility devices + prioritizing comfort for transit + lodging. I took all my meds (even supplements!) when I was supposed to, put on sunscreen, drank water. Look how rested and ready! (3/18) Rikki stands in a red “Stil...
Read 19 tweets
I got ME after flu and within a few months became bedridden in a blacked out silent room ,fed liquid food through a straw and also lost speech. Doctor told me some symptoms were similar to stroke and brain injury 1 of 10
#MECFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Extreme ME/CFS affects the whole family especially when intense pain , sensitivity to noise , light , touch are present. These are now medically recognised as symptoms. Everything within the house changes for everyone 2 of 10
After the worst year passed I was assessed as needing 24/7 care and received carers daily as I was better able to tolerate visitors in our home. When things improved we managed by ourselves 3 of 10
Read 11 tweets
I created this reel to tell my story of viral-triggered #MECFS and why I fight for a national emergency declaration with @MEActNet for #MECFS and #LongCovid :…

Here's a thread of each still photo telling my story, for accessibility purposes: 1/
3,087 days ago I got a virus and I never got better.

2/ #MillionsMissing #MECFS Alison is a white woman wit...
Years later, I was diagnosed with #MyalgicEncephalomyelitis / Chronic Fatigue Syndrome. At that time (pre-pandemic), it was estimated up to 2.5 million Americans had ME/CFS.

3/ #MECFS Alison is a white woman wit...
Read 16 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
News from Germany 🩸: Why coffee and cake? Because finally I can 🎉

3 months into treatment for #MECFS microclots, I’m opening up on this piece of the puzzle for me: 🧵 1/n
#TeamClots #PostViral #MyalgicEncephalomyelitis
This was me in April this year. 18 months into significant relapse following a tonsillectomy and chronic infections. #pwME 2/n In a messy bedroom Eliza lays on her back in bed with her kn
In 2008, I worked full time in retail and was looking to begin acting classes. I lived an active life full of social, creative, sporting and spiritual activities that brought me joy and meaning. 3/n

📷: Ocean Kayaking in July 2008 Photo of Eliza in a yellow Kayak on the ocean. She wears a p
Read 46 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
Long 🧵Daughter's diary entry, age 12
'The writing beyond this page is strictly private and is only to be viewed with the express permission of Maeve' Of course I never asked or viewed. She died 2021 from #ME aged 27. We never identified a viral trigger. Lo & behold,
Tue 7 Aug 2007 (Three weeks after a peculiar viral infection that lasted exactly 29 days, and recovering well enough to have orthodontic brace fitted; audition for school show; pack & move house; go to best babysitter's wedding with no complaints) 'God I am TIRED!'
Sat 11 Aug, Oooohh . . . tired . . . hav a dolls house YAY! Almost completely unpacked
Sun 12, I am still vair tired! Why?! Mum has said she wants me to stay in bed all day and rest :¿ (got a tiredness headache too. Ow ow ow ow)
Fri 17, in bed - still tired :(
And so it
Read 14 tweets

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