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The National Institutes of Health RECOVER Initiative is moving forward with a clinical trial of exercise therapy for people with Long COVID.
#MEAction has serious concerns about the safety and efficacy of this study and has sent a letter calling on RECOVER to immediately release the study protocol for public review and outlining key concerns that must be addressed before the study is allowed to proceed.
We’re appalled that RECOVER is wasting precious research dollars on a trial that is potentially harmful for the majority of people with Long COVID, instead of focusing on clinical trials and treatments that could make a real difference for both the Long COVID and ME communities.
We know exercise interventions can worsen symptoms and cause harm to those with ME/CFS and anyone who experiences post-exertional malaise (PEM). This is especially concerning given that up to half of those with Long COVID meet the diagnostic criteria for ME/CFS, and PEM is experienced by the majority of those with Long COVID.
A RECOVER exercise trial may well be history repeating itself: a second PACE trial whose flawed design creates the illusion that “exercise cures Long COVD”, leading to clinical guidelines that could harm millions.
People with ME have a long history of being harmed by recommendations for exercise therapy. The largest trial used to justify these recommendations— known as the PACE trial—was scientifically and methodologically flawed and eventually debunked by the research community, but it caused years of damage to the ME/CFS community that we’re still working to undo.
RECOVER has a duty not to harm those Long COVID patients who experience PEM by repeating these well-documented mistakes. It should exclude from this study all Long COVID patients for whom exertion causes a worsening of symptoms and function, which is the majority of the Long COVID community.
But so far, RECOVER has released no concrete information about who this study will specifically include or exclude. There is no information on what the rationale would be for “treating” people with PEM with exercise therapy.
That is why we sent this letter calling on RECOVER to immediately release the study protocol for public review and outlining key concerns that must be addressed before the study is allowed to proceed.
We have a right to demand full transparency and satisfactory answers about this alarming exercise study. Without this information, there is no basis for believing this trial will be safe and/or effective for people with Long COVID.
Please stay tuned for more updates from #MEAction on this critical issue. We know you care deeply about the harm the PACE trial has caused for people with ME and don’t want to see that happen to anyone else. We will be sharing ways you can join us in taking action in the near future.
2 thoughts on “MEAction questions Long COVID exercise study’s safety, efficacy”
What’s most baffling here is why should it matter whether or not doctors believe a patient is medically Ill before treating her for malnutrition? if a patient is starving to death, you prevent bodily damage and starvation by giving them nutrition by what means necessary. A person starving to death is a clear indication that immediate intervention is needed. No one can “fake” the clear indicators of a body starving. The medical professionals can be as ignorant, lacking in knowledge about ME, or just plain stupid, it doesn’t change the fact that they are allowing people to starve to death. What is the point of medicine if not to use any and all available treatments to save the patient when patient is clearly at risk of dying.
It’s as if medical professions who volunteer treating refugees from a region caught up in civil war refuse to treat starvation amongst the children because it has ni medical cause; rather it’s a consequences of the destruction of the refugees normal food sources and the ongoing theft of food supplies donated to the refugees. That would be insane wouldn’t it. So is denying a starving woman the medical means of nourishing her body because doctors don’t believe she is really medically Ill. It doesn’t matter why she is starving at this point, what matters is she will experience severe organ damage and eventually death if the hospital does not give her necessary nourishment.
How many more inquests into the death of patients ME being starved to death under a doctors care do these fools need? How many more inquests before doctors and medical supervisors are sent to prison for murdering these patients? Choosing to allow someone to starve to death when treatment to nourish the patient is available is nothing less than premeditated murder – it is the deliberate choice to let a patient die despite the obvious indicators of malnutrition/starvation because of ignorance and prejudice.
If doctors and medical administrators want to debate the merits of the diagnosis of ME as a severe medical condition, let them do it after they save the patient.
And for Gods sake, what does it take for the medical establishment to see the obvious patterns of negative outcomes as a result of their ongoing, sadistic mistreatment of people ME – there os a major pattern here that is hard to ignore. The level of resistance, if not outright hostility, to the medical post-viral condition of ME (and other variations of neural immune disorders) is not rational, it’s not even medically or scientifically sound. I have suspected for some time that nations reluctance/resistance to acknowledge that ME is a legitimate and debilitating medical condition has far more to it than simply a matter of scientific evidence. The exponentially growing mound of evidence showing clear medical abnormalities and patterns of symptoms, even if it is mostly exploratory science (due to the lack of financial support for large scale studies that could relocate and verify promising exploration research), and the failure of psychological research to explain the clear patterns of symptoms and abnormalities found in smaller medical studies, indicates that the decision to reject ME as a medical condition makes little sense scientifically . And letting so many people suffer Medical Systems failures to provide care and compassionate treatment, despite the many promising medical research findings concerning ME is inhumane and contradicts the purported values and core principles of medicine, including “do no harm”.
Whatever the reason, it is nothing less than a sadistic, immoral and diabolic failure on the part of our worlds most developed nations. It is yet another indicator that the life and well-being of the people has little to do with the decisions of our leaders, within, and outside, our nations medical systems
Our cell metabolism–our Krebs cycles, our itaconate shunts, our muscle function, our vascular pumping of blood to the brain and to the heart–is all BROKEN. This “treatment” is like a doctor or trial making people run with broken legs and feet!! Except instead of obvious contusions and outward swelling, the PERMANENT DAMAGE will be in the form of horrifically worsened physiological injuries, GI systems shut down, people who are too sick to get out of BED or hold a conversation!
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