Thumbnail Photo by Ani Kolleshi on Unsplash
Hi đ
A big announcement this week:
We are happy to announce an informal partnership with Visible đ. The Visible team are helping us source the weekâs best research papers and the latest news. Visible is an activtiy tracking platform for ME and Long Covid that uses wearable technology to help you to pace. You can find out more about what theyâre upto here.
In regards to the Discord Server, still on the look out for more moderators. Please reach out if interested!
đ°Â Media
Long COVID clinics âinundatedâ with patients, and doctors canât cope
From the Sydney Morning Herald:
Australiaâs long COVID clinics are so under-resourced patients are waiting almost a year for treatment, as the Victorian government warns it will struggle to care for the growing number of patients without extra federal funding.
In its submission to the federal inquiry, the Victorian government called for increased federal health funding to âensure adequate care for long COVID without negatively impacting other hospitalisation care needsâ.
When many long COVID patients fall sick, donât get better and are unable to work, they discover they fall between cracks in Australiaâs social safety net.
People With Long Covid Face Barriers to Government Disability Benefits
From US News:
Like many others with long COVID, Taveras has fallen through the cracks of a system that was time-consuming and difficult to navigate even before the COVID-19 pandemic. People are facing years long wait times, insufficient legal support and a lack of clear guidance on how to prove they are disabled â compounded by the challenges of a medical system that does not have a uniform process for diagnosing long COVID, according to health experts and disability attorneys.
The Social Security Administration has identified about 40,000 disability claims that âinclude indication of a COVID infection at some point,â spokesperson Nicole Tiggemann said. How many people with long COVID are among the more than 1 million disability claims  awaiting processing by Social Security is unknown.
âThe application process is very demanding, very confusing for patients,â Sbrana said. âIt also entirely depends on you having this substantial breadcrumb trail of medical evidence.â
Background: Recently, the NYMag published a terrible piece of journalism on Long Covid. Not linking it because it is not worth sending them traffic. David Putrino offered a good response.
My Take: It is really refreshing to see medical professionals come to the defense of people with Complex Chronic Illness.
đ Research
Nirmatrelvir and the Risk of Post-Acute Sequelae of COVID-19
From MedRxiv:
Compared to the control group, nirmatrelvir was associated with reduced risk of post-acute death , hospitalization,ARR, and the composite outcome of death or hospitalization;
Compared to the control group, nirmatrelvir was associated with reduced risk of 10 of the 12 pre-specified post-acute sequelae evaluated in this analysis. Nirmatrelvir was associated with reduced risk of sequelae in the cardiovascular system (dysrhythmia and ischemic heart disease), coagulation and hematologic disorders (deep vein thrombosis, and pulmonary embolism), fatigue, liver disease, acute kidney disease, muscle pain, neurocognitive impairment, and shortness of breath. There was lack of statistically significant association between nirmatrelvir and post-acute sequelae including new onset diabetes and cough.
https://pubmed.ncbi.nlm.nih.gov/36310761/
Health-related quality of life in persons post-COVID-19 infection in comparison to normative controls and chronic pain patients
From Frontiers in Public Health:
Health-related quality of life (HRQoL) is a patient-centered outcome to evaluate a person's overall physical, emotional and social wellbeing in one outcome measure
When evaluating the response scores on the different dimensions of the EQ5D, this rather low score seems to be mainly affected by problems with activities and pain/discomfort. In total, 89.58% of the post-COVID-19 infected persons reported some or extreme pain and 82.45% indicated some or serious limitations when performing usual activities.
Recently, it was recommended that policymakers and healthcare providers must urgently investigate robust strategies for improving the HRQoL in persons post-COVID-19 infection (19 ). The current study results strongly support this statement, since ⊠scores were significantly lower in post-COVID-19 infected persons, compared to normative persons.
Does ME/CFS Change Molecularly Throughout a Day?Jonas Bergquist &Â Christopher Armstrong's New Study
!note this study has not been undertaken yet
From the Open Medicine Foundation:
While research in recent decades has identified many areas of dysfunction in the bodies of ME/CFS patients, we still lack comprehensive knowledge of how all the parts fit together. All people experience subtle biological changes during food digestion, stress, and both physical and mental exertion, however, ME/CFS patients can have physical changes in symptom expression in response to these. Few studies have explored how symptoms change in patients, from day to day or even hour to hour.
This study plans to use high frequency blood testingâmultiple tests done over a 6â8-hour periodâto evaluate what changes in ME/CFS patients over the course of a day.
My Take: For such dynamic conditions, single time point tests donât tell us much, every day testing is great but even better to see studies moving to even more frequent testings.
đ©șÂ Treatments
Clinical trials on the pharmacological treatment of long COVID: a systematic review
!note only abstract
From The Journal of Medical Virology:
This review included 6 published trials and 54 trial registration records. There is significant heterogeneity in the characterization of long COVID and ascertainment of primary outcomes. Most of the trials are focused on individual symptoms of long COVID or isolated organ dysfunction, classified according to cardiovascular, respiratory and functional capacity, neurological and psychological, fatigue, and olfactory dysfunction. Most of the interventions are related to the mechanisms causing the individual symptoms. Although the 6 published trials showed significant improvement in the symptoms or organ dysfunction studied, these initial studies lack internal and external validity limiting the generalizability.
New treatment being tested for Long Covid!
My Take: It seems like help is on the way. All of these ongoing & future trials has me very optimistic, personally.
The study from the VA showing Nirmatrelvir (Paxlovid) decreases the risk of Long Covid is HUGE. It also shows that the drug is being vastly underutilized in the VA (and likely everywhere). Also, because Paxlovid is not yet indicated for people with no risk factors, we donât know if it decreases risk in that population. But that should be an *urgently* studied question. So we can potentially prevent it from happening to people in the first place.
With the new sponsorship, do you think we will be able to see more studies from international publications, as opposed to articles just based in the US?