🚨 Some time ago, we have written to the authors of the “Clinical Care Guide” (Bateman Center) to express our deep concern about its portrayal of #LongCOVID.
While it addresses PEM, POTS & MCAS, it largely ignores the broader reality of this disease:
🔗 longcovidriseup.eu/bateman-letter/
The concerns we raised in our letter about LC are not merely theoretical.
Recent trial approach continue to divide LC patients into simplistic categories and make assumptions about rehabilitation safety when patients have no PEM, when we know that
1) rehab is not a treatment for LC
and
Trial design and the list of sites involved here :
clinicaltrials.gov/study/NCT064...
of the disease, and be developed with those living with it - not by selectively acknowledging a part of our reality, or narrowing the diverse ways LC can be severe.
Moreover, the guide is very limited not only for LC but also for other conditions that are supposed to be included in this document.
« Compassionate care » is not an adapted approach to LC.
We need proactive care:
appropriate testing,
specialist follow-up,
prevention of complications,
and protection from reinfection through clean air, ventilation and masking in healthcare settings.
LC guidelines must reflect the full spectrum
organ damage, cardiovascular complications, autoimmune disorders, neurological injuries & the increased risk of death documented in the scientific literature.
LC is not just a collection of symptoms. It is a serious multisystem disease.
Long COVID Rise Up
2) can harm in very diverse ways.
Notably,
This trial appears to involve actors connected to the framework promoted above, and is positioned for rapid integration into patient care pathways, « Scalability was a deliberate design consideration»
:
www.medrxiv.org/content/10.6...
Long Covid is not "baffling" at all. There are thousands of publications which show multi-system pathology across all body systems, including extensive evidence of organ damage. The scientific and clinical evidence is undeniable and should be reported about accurately
#LongCovid
Long COVID Rise Up
Long COVID Rise Up
Long COVID Rise Up
Long COVID Rise Up
On this day, I want to express my gratitude and solidarity to all patients, advocates, patient-researchers and allies who have been fighting for years. But I also want to remember the lives lost, the pain, the suffering, the lack of care, the fight. Thinking about all of you. Thanks.
#LongCovid
Six years ago today the term #LongCovid was first used as a Twitter hashtag. A single tweet by a patient linked together a growing grassroots movement of people, who weren't recovering from covid. Across the world, we're still fighting for research and treatment of our disease
Dr Elisa Perego
Dr Elisa Perego
Six years since the height of the pandemic, the scientific community remains baffled by long Covid. But there might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.
Dr Elisa Perego
There might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.
