Wie man sich selbst die mühselige jahrelange Arbeit, das Krankheitsbild aus der Psychoecke zu holen, selbst wieder zunichte macht…: warum macht ausgerechnet die
New study: "At 3-6 mo. after mild/asymptomatic SARS-CoV-2 infection, virus-specific antibodies in saliva were substantially induced signifying a strong reactivation of latent viruses (EBV, HHV6 and HERV-K) ... #MECFS antibody responses were significantly stronger" #LongCovid 1/
Y'all I'm pissed right now. 😡 Post covid pediatric clinic has no opening until February, I took my 7 year old son to a pediatric cardiologist. Tell me WHY Dr said she doesn't think he has #POTS, but thinks whatever the issue is, would be fixed by GRADED EXERCISE THERAPY! #MECFS
🦙5 Ob ich von #mecfs in meinem Studium schonmal gehört habe oder diese Erkrankung kannte? Nein. Und bis heute bin ich fassungslos, wie das sein kann. Was für eine Versorgungslücke vorhanden ist. Für mich ein großer Skandal. Aber wer nicht laut sein kann, wird nicht gehört.
Hinweis auf Rolle von Reaktivierung von EBV, HHV6, HERV-K bei #MECFS, wenn Antikörper im Speichel gemessen werden.
Nachweis von EBV in PCR aus Speichel war auch mit #LongCovid assoziiert, in einer Studie wo ich dabei sein durfte:https://onlinelibrary.wiley.com/doi/10.1111/all.15471…
PLEASE do everything you can to avoid covid and #LongCovid because it's unlikely you can even begin to comprehend the amount of gaslighting you will experience from medics.
Just ask *anyone* with #LongCovid and #MECFS and they will tell you!
😷🧪💨💉🪟
, who gives reporters a glimpse of what life with severe #MECFS looks like behind closed doors. In doing so, Whitney raises awareness of the realities of this disease.
Any #pwME /asthma/ COPD nebulise magnesium sulphate?
I've just tried but making me cough. I'm guessing if I have asthma then that's prob the idea but problem is it causes pem in my respiratory muscles. Going round the houses with breathing.
#MyalgicEncephalomyelitis#mecfs
ME/CFS featured on the front page of @sfchronicle!
Many thanks to the brave #pwme@DafoeWhitney, who gives reporters a glimpse of what life with severe #MECFS looks like behind closed doors. In doing so, Whitney raises awareness of the realities of this disease.
I never imagined that at the age of 35 I would be fully disabled by the exhaustion and pain of #MEcfs. I was equally stunned by the discovery that others could, and often would, simply refuse to acknowledge the reality of my suffering. #MEAwarenessHour
There is an urban myth that patients with #MECFS benefit from secondary gains. Did you ever consider the negative side: isolation, lost social contacts, ruined career, ruined economy, severe symptoms around the clock—and deprecatory remarks about secondary gains! #MEAwarenessHour
"my daughter died - the system does not work... we have a problem with the medical establishment, how at 27 you die from ME has to be answered" says Sarah Boothby whose daughter Maeve died of #MEcfs last year #MillionsMissing
I wish I could show up to just one moment of my life as my whole and healthy self. And not as this shell of a man that always appears in my stead.
#MECFS
Wow, 18,000 registered participants. 13,500 completed the questionnaire = a huge dataset on ME. Not everyone will be invited to provide a DNA sample so we need your help to #DecodeME.
Help us now to recruit to the world’s largest study for people with #MECFS