Yann (ME/LC Research & Advcacy)
@yann_mecfs
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Very severe ME (Long Covid). Not always able to use phone. Bedridden. Unable to speak. Socials:
Switzerland
Joined April 2024
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🤲 ME (and LC) resources:
📢 Ways to Advocacte and help:
❓What is ME/CFS?
✋Sign and share Petition against GET:
🔬View the Science for ME forum
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Wow. I wonder what could have caused such a drastic increase in the number of disabled people?
#longcovid
#covid
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1K
Long Covid and ME have mostly earned the badge of “biological illnesses”, so psychosomatic researchers are fighting back.
They are diagnosing people they would have previously diagnosed with ME or LC, with FND.
There is a push to “replace” ME/LC/POTS etc. with FND. (1/3)
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For disability pride month, I want to honour and remember the 250’000 disabled people who were systematically murdered by the Nazi regime. They were murdered by doctors, and the language used was “euthanasia” or “mercy killing”. (1/3)
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After not being able to do something for a while due to ME/CFS, you start to wonder, will I ever be able to do said thing again?
It’s been 6 months since I’ve been able to speak or listen to music. Will I ever speak again? Will I ever hear music again?
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This has been said a million times, but I feel the need to say it again.
ME/CFS is NOT Chronic Fatigue.
Would you call stomach cancer “tummy cramps”?
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When are researchers going to stop treating pacing as if it’s useless because “it doesn’t cure people”?
Pacing is a necessary strategy to prevent worsening. It is not a “cure” and you can’t count on it to lead to “recovery”.
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ME is not a functional disorder.
ME is a physical disease.
Maeve died because she was treated with no humanity, doctors believing she had a functional disorder.
“can’t find anything medical, feel it is functional, can drink if she wishes” - Hospital Doctor in Maeve’s case
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Medicine has an unfortunate ego problem. The false assumption that when no biological abnormalities are found, physical symptoms must have a psychological cause. It has been proven wrong many times throughout history, but nothing has really changed.
I still remember the days back when...
Crohn´s disease and ulcerative colitis were considered psychosomatic in origin. And now genomics not only shows how IBDs may start but also points to possible drug targets:
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Avindra Nath:
“the symptoms [of Long Covid] are so much more severe compared to ME/CFS”
The guy in charge of ME/CFS at this NIH.
No wonder ME/CFS doesn’t get taken seriously.
(he said this on the podcast: COVID on the Brain, 12 Feb 2024)
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PEM is not a “subjective” worsening of symptoms.
PEM is an objective worsening of the entire illness, including symptoms, and functional baseline (capacity for triggering more PEM.)
Sometimes it does not go away and leads to a permanent worsening of the condition.
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If you want to understand ME. Stop only focusing on fatigue. Study PEM. Thank you for your efforts
@RobWust
.
Our BSc students are presenting their results about
#PEM
in
#longcovid
and
#mecfs
. Lots of work, and giving us another 🧩 pieces to understanding PEM. We now check their data, and will add more results before writing this up for a follow-up publication. Great work guys!
@VU_FGB
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@RorPreston
✅ Make symptoms invisible to the naked eye
✅ Make it so that negative reactions are delayed by a significant timeframe
✅ Make it have symptoms from multiple body systems so no specialty claims it
✅ Make it heterogenous so it’s difficult to classify as a clinical entity.
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Just adding a note:
If anyone here has FND. Your symptoms are real and you deserve proper treatment, consideration, and care.
Your illness is real. I am simply criticising the label doctors have given it, which they use to assume your symptoms are psychological in cause.
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I find it crazy that illnesses like schizophrenia, bipolar, and major depressive disorder, are treated as if they are caused by thoughts and behaviours even though we have clear evidence of organic and genetic underpinnings.
Some areas of psychiatry are outdated pseudoscience.
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We have lost so many people to ME/CFS and Long Covid… Most aren’t counted, and their stories aren’t told…
#GreatestMEdicalScandal
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FND is a non-specific diagnosis that means “neurological symptoms a doctor can’t find the cause of”.
However, it is presented to patients as a distinct illness to “make them accept the diagnosis”.
They then treat this as a somatic disorder: GET+CBT+Antidepressants. (2/3)
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Children were taken away for “medical treatment”and murdered. The Nazis thrived on propaganda painting disabled people as malingerers stealing “hard working” people’s money.
Many of the ableist tropes used by nazis are to a lesser extent still present today.
(2/3)
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I think there is a misconception that in severe ME patients sound and light sensitivity is because of pain or such.
While they do cause pain, in most people, these sensitivities are because the processing of the noise or light directly causes cognitive
#PEM
and worsening.
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There are myriad reports of (BPS) doctors who previously diagnosed ME/CFS diagnosing FND to get around the guidelines banning GET.
For example children going to Crawley’s “chronic fatigue” clinic. The same Crawley who is a notorious proponent of GET+CBT+Lightning Process. (3/3)
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“Chronic Fatigue”?? Come on
@Medscape
you can do way better.
Chronic Fatigue is a symptom not a disease. Got to at least add the syndrome if not add the ME part too.
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ME/CFS must have some really interesting disease mechanisms.
People starting with just ME/CFS spontaneously develop diseases like POTS and MCAS at a much higher rate.
Not to mention how PEM can make new symptoms appear and permanently worsen the illness.
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Calling
#JohnVsJonVsME
to cover the medical scandal of ME. Lets let the world know. Please join the campaign!
@Charleswmwilson
@MPasset
@MayaTribbitt
@johnathanappel
@neelamreports
@csmcdaniel
@madelkuhns
@DanAmira
@joshjohnson
@politicalli
@gilbertjasono
@sophierzucker
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Shame on the BPS/FND ideologues hijacking Maeve’s inquest to peddle the exact same views that led to her death.
I hope that one day you will be held responsible.
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You rarely hear about it, but ME ends lives. There is so much stigma that families don’t often disclose suicide was due to ME.
There is no way to know how many it has killed, and governments don’t bother estimating.
#MEkills
#GreatestMEdicalScandal
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What if we created a website full of stories of doctors changing their mind about ME/CFS?
They could say what made them change their mind, and make a compelling case for other medical professionals to change their mind too.
How many people, HCPs especially, after being directly affected by
#ME
or
#LongCovid
say, “if only I had known” as
@NeurologistMom
does?
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Walitt is planning to use his
#EffortPreference
test in the NIH
#LongCovid
study.
The test is contraindicated for physical diseases, and was developed for anhedonia. Despite this, the NIH (wrongly) uses it to try to pathologise pacing as a faulty choice. (ignoring
#PEM
)
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Psychosomatic research into LC focuses on questions like, around your covid infection:
* Did you have mental health issues?
* Did you experience a life changing event?
- Uhh yea. I became disabled.
Do these people refuse to consider
#longcovid
might be caused by… COVID?
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In memory of Maeve Boothby O’Neill. And the countless others who have gone through similar ordeals undocumented.
The medical system and society at large cruelly failed you, yet through you (and your family’s) altruism, things are changing for the better.
Thank you.
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You can learn more here
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Looks like Australia is dropping GET.
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The honest truth is no one knows.
What’s baffling is likely more money has flowed through the hands of the researchers aiming to use whatever statistical manipulation necessary to “prove” it’s all in the mind than has been given those trying to actually understand the disease.
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This has to be said. Unless they ask for your opinion, you have absolutely no right to tell a disabled person they should consider
#Euthanasia
.
Imagine if someone went up to you and said “I don’t think your life is worth living”, “you should probably kill yourself”.
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@thephysicsgirl
Thank you Kyle and Diana for the advocacy you are doing. From the ME and Long Covid community in Switzerland, we are very grateful.
I hope the event did not cause Diana to crash!
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What’s most shocking to me about this segment is the sentence at the bottom.
Where they admit FND and MUS are used as euphemisms for “hysteria”.
When are we going to stop ridiculing patients for diseases medicine is to incompetent to diagnose or explain?
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When will biomedical funders, doctors, medical schools, pharmaceutical companies start taking these illnesses seriously? The Neglect is killing people.
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Does anyone know of any personal accounts of people with v. severe
#MECFS
who spent a significant time (months/years) unable to communicate at all. No phone/talk/sign language just completely stuck alone w. thoughts.
I’ve only read about Whitney but I’m sure there are more.
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Does anyone else see projects and wonder what life would be like if that effort/money was redirected towards
#MECFS
.
Large stadiums cost ~ a billion to build, imagine how much better our lives would be if the cost of a single stadium were smartly invested into ME research?
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@davidtuller1
@cochranecollab
yep.
For those who haven’t sign and share the petition asking cochrane to act, we are less than 100 signatures from 11’000
Sign the Petition
Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
www.change.org
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What doesn’t the world understand about *Chronic* in chronic disease. My friends and family are so sweet but I’m tired of getting told “get better soon” or “hope you’re recovering” etc.
Society refuses to accept a disabled person as they are…
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One of the best ways to help is to participate in ME/LC Research. Here’s how:
🌍Join the
@OpenMedF
StudyME Registry
🌍 LC studies recruiting near you
@lcstudiesdotnet
🌍 List of ME studies recruiting
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The idea that people with ME don’t want to get better is absurd. Yet it has been central to societal views about chronically ill people for decades.
This AI-generated image highlights just how ridiculous this concept is.
#MEawarenesshour
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American people, please vote. As if disabled people don’t face enough discrimination already…
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@positively___ME
@PatientDreams
He literally was in charge of the 8 year 8 million dollar NIH study investigating all the biological abnormalities in ME/CFS. I don’t think there is an excuse here.
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@weeklyshowpod
What do you recommend the millions disabled by the pandemic do so that politicians take them seriously?
There’s an immense public pressure to act like “covid’s over”. How do we get politicians to understand that for millions of disabled people, it is far from over?
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@GoreLloyd
V. severe people, me included, do not see doctors unless absolutely necessary as every visit brings a crash since they don’t understand PEM, and for fear of being sectioned.
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This.
Long Covid causes mental health issues. Not surprising given it is a life destroying illness that most doctors don’t even take seriously.
Mental health issues do not cause long covid.
Press release:
“Risk factors for
#longCOVID
revealed”
“Although studies have suggested many with long COVID experience mental health challenges, we did not find depressive symptoms prior to
#SARSCoV2
infection were a major risk factor for long
#COVID
”
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@NeilAllen39
Dear Neil, congrats on speaking at this event! I’m happy for you.
Please note that Sir Wessley is a major reason a vulnerable group of patients with a neuroimmune disease were inappropriately psychologised.
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@mfairma
PACE Trial Authors: “We used subjective outcome measures in our study because we think patients can best judge their health”
Also PACE trial authors: Ignores every single patient survey patients say GET worsened illness. With sample sizes totalling tens of thousands.
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I know FND folk are trying to retake the name “functional”, but the truth is to doctors “functional disorder” means something along the lines of:
“nothing wrong physically, likely psychological factors involved”.
FND people deserve a better name, or even a better diagnosis.
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I can’t believe a portion of the people publishing studies on
#MECFS
actively think it is the same thing as burnout.
How uninformed must you be… And of course governments choose to fund them because their “research” fits the narrative that pwME are lazy. Utter Delusion.
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We need this paradigm shift in the literature.
Without it PEM is dismissed as subjective “complaints” about symptoms post-exertion.
This has been done for decades to support exercise therapy, and is now (in 2024!) being pushed by the NIH with “effort preference”.
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@CovidCastaways
Well ME/CFS scores lower on patient quality of life scores than long covid (SF-36). Obviously this is just the average patient, there is immense variability.
And in this context, comparing is not worthwhile, as Long Covid is an umbrella term which includes some ME cases too.
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Do you have Long Covid or ME/CFS or related complex chronic illnesses? Have you been *mis*diagnosed with any of the following?
Functional Cond.: ie. FND, FSS etc.
Psychosomatic Cond.: ie. FSS, PPS, MUS etc.
Psychiatric Cond.: Burnout, Depression, Anxiety etc.
Yes
206
No
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We NEED a Republican Senator to co-sponsor this bill. Without Biparitisan support it is unlikely to pass, especially in the House.
Please call your representatives, get your friends family to do the same, exert all the pressure you can. 🙏
OK so this is a separate bill from the general budget, which explains why LC was barely mentioned.
This is a must pass. If it doesn't,
#LongCovid
will not be solved. There will be no meaningful progress. Millions will be left to exist without living.
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@davidtuller1
1) I was diagnosed with FND by a neurologist who said that FND was causing my Long Covid (ME/CFS). He yelled at me to stop using my wheelchair, told me that this was happening to me because I was traumatised when I was little and couldn't remember it, and prescribed GET.
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Insomnia -> Lack of Sleep -> Crash / PEM -> PEM worsens insomnia…
Living with v. severe
#MECFS
sometimes feels like a spiral down to hell… 😅
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@JKBurmeister
Remember what they did to us last time we criticised big research
Although it’s tamer, it’s all from the same playbook.
Pointing out errors, problems, bias, and inaccuracies in research should be celebrated not criticised.
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@taksky_
What I’m trying to criticise is researchers saying exercise therapy is a “treatment” because more people “improve” under it than pacing. (think PACE trial)
Ie. comparing what is supposed to be a treatment to a necessary management startegy.
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FND is said to be “brain-connection disorder”, which is a soft way of saying psychiatric disease.
Dx criteria show a significant risk of physical diseases not recognised by the doctor being misdiagnosed. pwME, pwLC, pwMCAS, pwPOTS are suffering the consequences.
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context:
“We did a lot of research on ME/CFS, and we have a paper that should soon be published out of that research. The thing is that there's so much overlap between that and long COVID, and the population affected by long COVID is so much larger, [symptoms are more severe]”
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@AaronCa11
It’s never “I got lucky and I recovered”. It’s always “I’m 100% sure my magic crystals and the fact I took a [insert scam placebo] pill lead to my recovery”.
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@profmsharpe
@davidtuller1
@Tweet_ItsMaya
@GeorgeMonbiot
?
Aren’t you profiting of contracts with insurance companies professor Sharpe?
Meanwhile David Tuller has selflessly devoted much of his career to fighting for a vulnerable group of patients.
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Here is a post I made showing major problems with LCAP. Please keep comments in it civil. Not gonna reply to arguments here as I already spent all day doing that in the comments of the post.
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#pwME
and people with Long Covid who experience PEM:
Do you sometimes experience a feeling of “overheating” ie. heat rushing all over your body? Others have said it is especially common when in PEM or overexerting yourself.
Yes
240
No
41
Unsure
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New here. Gonna try use this account when I’m able to go on my phone (for advocacy), or if I desperately need help. Thanks
@DafoeWhitney
your writings have literally saved my life uptil now.
#SevereME
#VerySevereMECFS
#pwME
#SevereMECFS
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Accepting you are ill with a poor prognosis is not “negativity” or “doom and gloom”.
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How it feels like giving patient feedback to the average BPS “researcher”
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@Victoriantaddeo
they act like it is “do no harm to worldview of the medical establishment” and not, “do no harm to the patient in your care”
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@melindagates
Dear Melinda,
ME is a type of Long Covid that is ignored in the medical profession. It is very disabling, common (3+ mil cases in the US), and primarily affects women. It is the least funded disease per disease burden at the NIH. We need someone like you to help us. ❤️
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@AaronCa11
and me have created an account to combat LC/ME misinformation across social media and promote awareness. Please consideration following and sharing.
@LCMEPirates
Cheers!
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@Naomi_D_Harvey
@doyouseem_e_now
@alexandrite113
Or die from complications, clotting, homelessness etc. Definitely a survivorship bias in the statement that most get better.
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It’s disheartening that a mere couple days after the director of the NIH said they appreciated patients helping, this comes from Nath.
If you choose to become a researcher and publish your work, you must be open to it being criticised and held to strict scientific standards.
5/28/24 NIH Advocacy call: Nath continued his intimidation and vilification campaign telling advocates that they if they continue to be critical of intramural ME study, future ME research is at risk. Inspector General & Congress need to step in here.
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Let’s get ME taken seriously worldwide! There is a letter template for every country. Please take a minute to share it to your WHO representatives and share this tweet. The more people do it, the more likely there is to be change!
Our campaign building a
#GlobalVoiceForME
still continues after
#WorldMEDay
. Take action now and bring your voice to your WHO representatives using our template before May 31st!
#MECFS
#campaign
#EMSFC
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@dysclinic
“healing”, “medically-unexplained”, “rewire your brain”, “software not hardware” etc.
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@DafoeWhitney
Every layer of society turns a blind eye. Much of “death” is actually murder. Muder of which society ignores the cause and nature, murder which isn’t counted by the bureaucrats, and murder which will continually happen because those in power do not care enough to stop it.
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@davidtuller1
2) He forced me to exercise to "prove" that I can do it. I later went home and when looking up research, found there was no empirical basis to his claims.
His appointment has permanently worsened my health.
He is also co-author of the swiss LC guidelines...
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The BPS/FND brigade’s mastery of language ceases to amaze me. They manage to wrap the most irrational concepts into the prettiest gift wrappings, presenting every radical idea of theirs as a moderate middle-ground.
They would have made great lawyers. Or politicians.
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@MJM0187
Might want to read into the research and biomedical findings before making unsupported claims.
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Reddit advocacy at work. With every small step, we can help ❤️
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“A lot has happened in the last year for people with ME, which we are thankful for. But it is a small drop in the ocean compared to the desolate situation of patients.”
Wieder ist ein
#MEawarenessmonth
vergangen. Seit dem letzten ist viel gelaufen, wofür wir sehr dankbar sind. Aber es ist ein Tropfen auf den heissen Stein angesichts der desolaten Situation der Patient:innen.
«Es ist jetzt Zeit, dass sich etwas bewegt!»
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Imagine being so twisted up in an alternative interpretation of facts, that you claim “functional disorders” (ie. physical problems with no known underlying abnormalities) is a “symptom” of a disease you found had immune and neurological abnormalities.
@JKBurmeister
@TurnItUp4ME
@NIH
Did you & other
#pwME
see Dr. Avi Nath’s May 6, 2024 PowerPoint slide on which he included “functional disorders” as his final bullet point?
Why did NIH’s Dr. Nath include “functional disorders” when discussing M.E.?
#MyalgicEncephalomyelitis
Cc:
@davidtuller1
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@davidtuller1
3) This sort of incompetency is happening every day. These people are advisors to governments, professors, they publish research.
They are the new “BPS”. An a pseudoscientific cult of sorts, that thrives on psychologising even though it lacks empircal basis.
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@TheChronicColab
Science for ME has multiple pages of high quality discussion on it:
Most glaring problems that came up was the utter neglect of anyone who isn’t mild and the strong focus on nutrition (which is important, but is way overstated)
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No one deserves to be doxxed or harassed online. This has happened to many people in the long covid community recently. Even the people I disagree most strongly with have been a target of this. No-one deserves it.
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@AaronCa11
*suffers from a disease that entails hundreds of symptoms*
“everyone is tired”
🤦
Sorry man. You deserve better.
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Raelan Agle, the youtuber whose “recovery stories”this study will analyse, uses her youtube channel to sell a 295 USD “brain retraining” recovery course.
This is not science this is blantant propaganda. As bad as the lightning process.
Thread 🧵
I've just learnt of a new project/study at Goldsmiths (University of London), which I have concerns about.
The project is called 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube'. 1/n
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@dima_podolsky
I mostly agree with you. But stomach cramps can be absolutely disabling too (meaning you are only able to roll around in your bed in pain and literally unable to eat).
The goal of my post was to critique the simplification of a complex disease to a single symptom.
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Dear journalists, news editors, and politicians, COVID is still killing and disabling tens of millions a year. The pandemic is only over as a sociological phenomenon. Epidemiologically, we’re still very much in the midst of a pandemic.
Cheers.
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@cstroeckw
Agreed.
This is why it is a tragedy that RECOVER spent so much on “treatments”, like exercise, therapy, melatonin, light therapy…
For each one of those trials you could indeed have 5-10 teams of biologists working in a lab trying to find out biomarkers, and mechanisms.
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It’s quite ironic that I was called slurs multiple times in the comments. However there are over 40 LCAP comments calling me “hateful” for bringing up concerns about LCAP.
Meanwhile, the vast majority of my concerns were never addressed and those that were were not convincing.
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Amazing chart by Ror Preston showing how debilitating ME/CFS is compared to other diseases.
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@RorPreston
Really neat chart. I almost wish there was a version of this without the mental illnesses. It would be such a useful advocacy tool.
Obviously I dont mean diminish mental illness, but given the history ME psychologisation, it makes sense to separate here.
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