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J’ai déposé une proposition de loi pour en finir avec l’invisibilisation et l’abandon des malades du Covid long !
Les chiffres sont inquiétants : en 2022, Santé publique France recensait 2 millions de malades, dont 700 000 atteints de formes sévères. Une personne atteinte sur cinq cesse de travailler, et un grand nombre de celles qui poursuivent leur activité ne peuvent reprendre qu’à temps partiel ou finissent par être licenciées. Des jeunes sont radiés de leurs établissements d’enseignement, et les enfants malades restent sans repérage à l’école, faute de formation des médecins scolaires.
Voilà ce que contient ma proposition de loi 👉
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CW: Death
I met Lea (not her real name), who was also suffering from very severe ME/CFS, on Reddit in early August. She also had POTS, MCAS, EDS, and gastroparesis. We started talking after realizing how similar our situations were, especially when it came to nutrition, struggling to eat enough, and losing so much weight. She was hospitalized because of these difficulties and had spent five of the previous seven months in the hospital.
I could tell from the very beginning that Lea was an incredibly kind person. She was smart and caring, always trying to help others even when she was struggling so much herself. She always found a way to make jokes despite her suffering, which was something I truly admired about her. We exchanged messages here and there, as much as our conditions and the time zone difference allowed.
On August 30, she told me she would reply in a few days because she was feeling particularly unwell. But the days went by, and then the entire month of September passed without any news from her. I feared the worst. And sadly, I was right... A few days ago, Lea's father reached out to let me know that she had passed away in the hospital in early September.
I'm still deeply saddened by her death, but I'm also angry. Because she was in the hospital, a place where she should have received the care she needed and been safe. Instead, she was denied help because she "didn't meet the criteria." Until she finally did. But by then, it was too late. Perhaps all of this could have been avoided if she had received the help she needed sooner.
No one should ever have to go through something like this, especially not in their early twenties, after battling such a devastating illness for almost a decade. I can't even begin to imagine how much she must have suffered in her final days.
Rest in peace, my dear friend. You deserved so much better. I will not forget you.🌹💙
#MECFS #MEKills
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L'encéphalite myalgique est une maladie grave. Arnaud vient de décéder par euthanasie en Belgique. Après avoir lui aussi frappé à toutes les portes des hôpitaux de France. Après avoir entendu mille fois que c'est dans la tête. Bon voyage Arnaud.
leparisien.fr/societe/sante/…
Please share, like, interact.
It is very important to us that a politician asks the Minister of Health for concrete measures. We can no longer take the catastrophic way these diseases are treated in our country ❤️🩹!
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Tissue-specific autoantibody signatures reveal immune alterations undetected by routine serology in long COVID
🚨83% of long COVID patients have rogue autoantibodies attacking their own heart, lungs & blood vessels, and every standard blood test misses it completely. VERY INTERESTING!
➡️In a UNIQUE Hungarian cohort of 114 long COVID patients versus 36 pre-pandemic controls, tissue-specific Western blotting detected autoantibodies in 83% of cases, with strong cardiovascular dominance,
➡️Vascular autoreactivity was markedly higher in long COVID (34% vs. 8%, p<0.05), cardiac (54%) and pulmonary (34%) signals trended elevated but did not reach significance( cohort size?),
➡️Autoantibodies were predominantly IgM-skewed, polyreactive (up to 8 bands per patient), and persisted longitudinally (mean 141 days), with new isotypes emerging over time,
➡️Standard ANA testing showed no group differences and zero clinical correlations, rendering it useless for detecting these alterations,
➡️Cardiac autoreactivity associated with hypertension and headache, overall autoreactivity correlated with anosmia/ageusia, female sex, CRP, BMI, creatinine, and troponin levels,
➡️The study used human cardiac, pulmonary, and vascular tissue homogenates.
➡️Findings were independent of routine serology and highlight an under-recognized immune component invisible to current diagnostics.
➡️“This persistent, IgM-skewed profile suggests ongoing immune dysregulation and may reflect a previously underrecognized component of the immunological response in long COVID, highlighting the need for targeted immunodiagnostic approaches beyond routine serology.”
‼️Why this is shocking:
It proves that in 83% of long COVID patients, the immune system is actively producing autoantibodies that directly target their own heart, lung, and especially blood-vessel tissues, yet every standard blood test (ANA HEp-2) comes back normal.
These rogue antibodies are polyreactive, IgM-dominant, persist for months, and keep evolving.
They correlate with real symptoms (anosmia, hypertension, headache) and lab markers of damage (troponin, CRP).
‼️In other words:
The majority of long COVID sufferers have smouldering, organ-specific autoimmunity that is completely invisible to routine diagnostics. Doctors are flying blind while patients’ tissues are quietly under autoimmune attack.
🤔As far as I know, this is the first direct evidence of hidden, cardiovascular-dominant tissue autoimmunity driving the chronic L0ngC0vid phase! #BookMark
#AvoidSars2 #AvoidReinfections
link.springer.com/article/10…
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Wrote that few days before my crash. Noticed that it's today. Will probably be my last post in a while as this crash is the worst I've ever had. Thanks everyone for the kind messages under my last few posts. Take care 🫶 :
One year ago I took my last shower. I don't even care anymore, but it's a reminder of all the things I stopped thinking it would come back later after intense pacing. Things like going outside, playing video games, watching video content, showering, sitting up, eating more than 10 foods etc. All those things I once stopped thinking "I'll do it again in a few weeks when PEM is gone". But PEM never went away. And abilities never came back. Now I'm lying there, dirty, weak, unable to do anything, thinking of what I might have been able to do to prevent it. Such an awful illness #MECFS
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Hi @JackHadfield14,
L'Express, a well-known French magazine, and its health journalist @GarciaVictor_ are relentlessly attacking long COVID patients and those with MECFS, suggesting that the disease might exist but that it's our brains that are stuck...
He relies on the work of Brigitte Ranque (AP-HP) and Lemogne, who prescribe CBT (Cognitive Behavioral Therapy) and exercise rehabilitation. These are the two voices surrounding Long COVID in France that are blocking all research.
Yes, for them, no biomarkers = no real symptoms. Can you help us and provide some compelling studies on the impact of Long COVID on the body?
This is how patients are treated in France.
I was a victim of this medical scandal and have been bedridden for 15 months now. These anti-scientific remarks are amplified by media-savvy doctors, like @barriere_dr an influential elite who disregard patients but prefer to discuss topics they don't understand.
@GarciaVictor_ @barriere_dr
Why not talk about Germany's €500 million investment in biomedical research (no CBT, psychology, or anything other than real science)? Would that be a stain on Macron's image?
eds.clinic/articles/germany-…
@C_Scheibenbogen
@RobWust
@VirusesImmunity
@polybioRF
@microbeminded2
@DrMaureenHanson
@surf4children
@fidjissimo
@RenzPolster
@sunsopeningband
HELP PLEASE !
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Vous postez vous-même un schéma de physiopathologie multisystémique du Covid long pour défendre un article qui le réduit à une piste psychosomatique. À ce stade, ce n’est plus du soutien, c’est de l’auto-débunkage illustré.
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C'est o.d.i.e.u.x les extraits du Dr Ranque dans ce fil, odieux. Quelle médiocrité.
Une patiente Covid Long en errance a listé proprement ses symptômes? Obsessionnelle. Elle se réveille la nuit en étouffant? Anxieuse. Elle affirme ne pas être angoissée? Alexithymique.
Merci de votre réponse @PatientsComPaRe. Cependant, dire “il y a un malentendu l'étude POPS n'est pas une étude sur le COVID long, en fait on veut psychopathologiser toutes les maladies chroniques, et pas seulement le CL, qui d'ailleurs n'existe pas”, cela ne nous rassure pas.
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A pleasant 30-minute phone call with my best friend = the next three days in bed. Emotional energy is real energy and my body doesn't care if it was a nice conversation. #longcovid #pem
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I hate my country so much and it's worse every day
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🧵Arrêts maladie en hausse en France : et si on passait à côté de l’essentiel ?
🎙️Avec :
👨⚕️Jérôme Larché
➡️ Médecin interniste, conseiller médical Covid long (ARS Occitanie)
👩💼Cécile Philippe
➡️ Présidente de l’Institut économique Molinari
ALT Le mystère des arrêts maladie inexpliqués en France: non, la détérioration de la santé
ALT Le mystère des arrêts maladie inexpliqués en France : non, la détérioration de la santé mentale n'explique pas tout Depuis 2020, les indemnités journalières ne sont jamais revenues au niveau pré-pandémie et progressent de 6,6 % par an au lieu de 4% entre 2015 et 2019. •: Jérôme Larché 7 et Cécile Philippe a
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Medicine hypersensitivity in ME/CFS 💉
I want to share our community for the sickest patients dealing with a severe form of medicine and treatment sensitivity, where even tiny crumb doses or the wrong supplement can trigger a brutal drugged/poisoned feeling + PEM crash and carry a real risk of worsening baseline.
Interesting observation: almost all of these patients also seem to have screen intolerance 🤔
Severe medicine hypersensitivity + screen intolerance = possible subtype?
Also interesting: none are tube fed. Maybe extreme gastroparesis is a distinct subtype of its own? I know a few tube-fed patients who only seem to have mild issues with medicine or treatment sensitivity.
Very early anecdotal data and gut feeling of course, but the pattern is interesting.
If you’re dealing with this kind of medicine hypersensitivity, please join below:
discord.gg/zRHEK9xT3D
Cc’ @RenzPolster, @DrMichaelScoma, @DafoeWhitney @JackHadfield14 @NBoydGibbins @mecfsskeptic @MedSensitivity @alexandrite113 @NeurologistMom @zagreusrevival @arta_semita @chydorina @liamsLCjourney @AntoineMECFS @renamemecfs @3eyedlambs @rhirhiarhii @PlzSolveCFS @JeffLubell_C19 @DecodeMEstudy Please share too, so patients suffering with this can find a home, some understanding, and hopefully a little hope amongst others going through the same thing.
Thanks!
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Serait-ce vraiment urgent? 🤨
Les projections économiques indiquent que le Covid Long pourrait bien coûter la bagatelle de 135 milliards de dollars par an sur la prochaine décennie aux pays de l'OCDE.
