Pain is also a common symptom in CFS, and fatigue in FM. A bit too arbitrary a distinction for my taste.
A letter to President Biden has been signed by Policy experts, scientists and disability groups. The subject is "Address the Crisis of Long COVID and Other Infection-Associated Chronic Conditions in FY25 Budget". The letter can be found here. It might be useful to remember these names for future advocacy projects or if S4ME decides to address Cochrane again. There's a few high profile names on that list and I expect that some of those wouldn't be opposed to signing letters in regards to ME/CFS either.
Yes, we need to get people on benefits but I'm very disappointed in the ongoing advocacy failure to address the hunger, poverty and homelessness people can endure while on benefits and the advocacy failure to hold Biden to his promise to update the safety net.
In fairness to Biden, he does need the cooperation of both houses of Congress. They are the ones who pass the budget, or not. The president can only put in a budget request.
Not quite news, but USA-specific. There is an activist campaign pushing for a funding "moonshot", large-scale funding for Long Covid. If you're in the USA, this is a good way to raise awareness, on social media and with politicians. https://longcovidmoonshot.com/ https://twitter.com/user/status/1736891494211178872
Just FYI the organization behind this letter is Patient-Led Research Collaborative. Here's their announcement (includes link to letter): https://patientresearchcovid19.com/...sis-in-fy25-budget-letter-to-president-biden/
Indeed. I was also disappointed by the lack of signatures of patients. Certainly signatures of researchers, clinicans and organisations are far more important but not even getting anywhere close to 1000 patient/ally signatures is somewhat disappointing. Wouldn't be surpised if this letter becomes a yearly thing.
To be honest I didn't even see the option to add my signature to the letter. For other folks who missed it here's the link for the form to add your name: https://docs.google.com/forms/d/e/1FAIpQLSeD0cPc0p6KWdc_2loULO5IDDV5RdkywQLtqJbPLObEfL-fSw/viewform
No, you just have to fill out your name in the google doc form, several researchers and organisations as well as patients that aren't US citizens/taxpayers have signed. It would also be possible for S4ME to sign the letter as organisation (I guess that would require the members/board to agree/vote on this).
Just sharing from our local paper (Minneapolis Star Tribune) “23 for '23: The most-read opinions” (Number #12 on Most Read for 2023) "Frustrating futility on long COVID," by the Star Tribune Editorial Board: " 'Desperate' isn't a word used often in the sterile language of elite medical journals. Yet that word alarmingly appears twice in a recent editorial from the Lancet publications about the lack of long COVID treatments."
Opinion: The U.S. is facing the biggest COVID wave since Omicron. Why are we still playing make-believe? By Eric J. Topol Jan. 4, 2024 3:15 AM PT https://www.latimes.com/opinion/story/2024-01-04/covid-2024-flu-virus-vaccine
Seems like a vain article to me. “We have lost the ability to track the actual number of infections since most people either test at home or don’t even test at all.” Makes it sound like it's the peoples fault for incorrectly testing, when in reality every government on the world gave up on tracking infections. One doesn't need a costly nationwide testing strategy to track infections, one can also do so very cost-efficiently using local test strategies, similarly to how viewer numbers are estimated on TV. Where are the epidemiologists? The article seems seems somewhat strange or at least I don't see how it could have an impact on anybody. The message is "you should be worried about Covid-19, but I can't provide evidence on why you should be worried". As he acknowledges hospitalisations are down, so nobody cares about that. He only mentions Long COVID in one small side sentence so most readers will have jumped over that. No mention of protecting at risk groups or something similar. So why should anybody be worried based on what he says? The message is seemingly supposed to address government inaction. Governments love all types of inaction, to address why this is the wrong approach the message on the outcomes of this vs. a different approach has to be presented.
I'm not sure what you mean by a 'vain article'. The article does say what evidence he's basing it on - the rapid rise of the new strain around the world, and the levels in sewage which is as I understand it a well established way of detecting infections in a community. "By wastewater levels, JN.1 is now associated with the second-biggest wave of infections in the United States in the pandemic, after Omicron." "We have lost the ability to track the actual number of infections since most people either test at home or don’t even test at all, but the very high wastewater levels of the virus indicate about 2 million Americans are getting infected each day." That seems pretty clear evidence to me. The thing about not testing is about government decisions on whether to organise national testing strategies. In the UK the only way you can test is with a home test, and you don't need to report the results anywhere. That's down to government policy, not blaming individuals. Similarly epidemiologists can only carry out data collection if governments fund testing.
Yes, but what does any of that mean for the public? I would argue that the only evidence we have (wastewater), shows that this is one of the largest waves not only in the US but also in Europe. But what does that matter for the public? Why should the public care about the size of the wave or the government inaction, because they clearly don't? I feel the reasons for that aren't clearly outlined enough in the article or at least a naive reader probably isn't aware of the advantages of action, lack of research and funding and I feel that won't be any different after reading this article.
I am not a huge fan of Topol's writings, but I admire his expertise. My son just contracted covid, for the first time. Very few people mask in indoor public spaces, despite news reporting of a surge of covid cases, influenza here in the US. I think Topol is indirectly addressing the dearth of direct reporting of cases via public health departments which benefits the epidemiologists. The broader picture is that the American public aren't taking covid seriously. This stems from the national political scene of 2020-2021 which promoted anti-science, a general lack of science background, disbelief in institutions and science experts, lies perpetuated by social media, etc. There is also a lack of universal health insurance and a lack of sick benefits which impacts spread. What percentage of the American public reads reputable online newspapers and are able to follow the advice given by experts on covid (ie getting vaccinated, masking, staying home when sick) ?
