Quite disheartening to return from 10 days working with some of the most important and relevant #MECFS and #LongCOVID researchers in the world and to read this drivel being allowed through from @bmj_latest. Let's be unambiguous about this: BMJ has 1/
allowed an OPINION piece to be published about #MECFS that flies in the face of: 1. current consensus science 2. recent NICE guidelines that were corrected so as to not include recommendations based on fraudulent/discredited data (PACE Trial) 3. voices of ME/CFS patients
2/
Not only should this be a point of shame for @bmj_latest and their editorial team, but we really should be asking about the legal ramifications of continuing to invite researchers to push an agenda that is no longer supported by consensus science and has NEVER been supported 3/
by the patient community. For the longest time, patients have told us that CBT and GET cause harm. We finally have hard physiologic data to support this and yet idealogues are allowed to freely publish OPINION about #MECFS and other energy-limiting diseases in @bmj_latest. To 4/
be clear, claims that CBT and GET can cure or treat severe #LongCOVID and #MECFS is no less absurd and dangerous than telling cancer patients to quit chemo and cure themselves with celery juice or telling day 1 abdominal surgery patients to boost recovery with a game of rugby. 5/
The opinions in this piece about #MECFS have already aged badly. Now they're downright wrong and dangerous. The commitment of @bmj_latest to continue publishing opinion in the face of needs to be met with outrage by the scientific community. Our patients need protection. /end
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Excerpt of an email received by a mentee of mine who is currently transitioning to independence as a career researcher. This is happening all over the country right now. The “equity research” my mentee was proposing was centered around novel neurotechnologies that increase the 1/
safety, privacy and independence of people with disabilities. Canceling programs like this doesn’t make America great, it makes America weak, behind the times, not at the bleeding edge of innovation and just kinda mean. Canceling programs that uplift early career scientists 2/
doesn’t “cut waste” and put “America first”, it encourages promising scientists to leave because opportunities are better elsewhere and they can more easily do great science in another location. America loses out so that the 1% can thrive further by creating environments that 3/
Two steps forward, one step back. For #LongCOVID awareness day today I had the honor of joining thousands of other New Yorkers in a peaceful protest to stand against many of the current administration’s recent damaging and thoughtless policies and executive orders. Let there 1/
be no misunderstandings here: many of the executive orders and policies being proposed and passed into law will erase entire populations of historically and currently excluded communities. Under the facile goal of “improving efficiency”, decisions are being made that not only 2/
harm the vulnerable, but weaken a nation by taking away its true strengths: diversity, morality and innovation. Today of all days, my ask of the complex chronic illness community to take heart: if it is the wish of this administration to start a constitutional street-fight, 3/
A tumultuous 24-ish hours since our preprint was released yesterday. I mentioned that this was a fraught issue and I genuinely do understand that people have mixed feelings about the work. I wanted to take some time to respond to some of the concerns and comments that have 1/
arisen. First, and most importantly: #LongCOVID (LC) and post-vaccine syndrome (PVS) both exist. Anyone claiming that all LC or even *most* LC is actually PVS is unserious and is making up nonsense that is not supported by the consensus science. I cannot stress this strongly 2/
enough. While we're talking about Long COVID and its clear distinction from PVS, I'd like to remind people that my team was talking about persistent effects of acute COVID in April and May of 2020. By November of 2020, we pre-printed our first LC paper:
3/medrxiv.org/content/10.110…
Grateful to continue to be able to do great work with the amazing team at @YaleMed, led by @VirusesImmunity and @hmkyale. Today one of our preprints dropped on what is a fraught and divisive topic: vaccine injury or post-vaccine syndrome (PVS). Before
1/medrxiv.org/content/10.110…
we dig into the results, I want to state a few things very clearly about the team that conducted this work:
- We firmly believe in the value of vaccinations. However, we also believe that drugs will always have side-effects in a percentage of the population. Holding these two 2/
beliefs are not mutually exclusive and so important for honest and transparent discourse with the community.
- We have been studying PVS for many years and listening to the community since PVS cases started to emerge. This is a hard topic to study. People don't want to fund 3/
This is an amazing example of how certain things simply cannot be broken down to a magic pill or formula and I think this is a wonderful #scicomm learning opportunity.
Note the communication from @hubermanlab. 1) Makes a statement about how a key opinion leader says you can 1/
*dramatically* increase endurance and strength. 2) Makes the caveat (“start slow”). Simple, direct, informative. Right?
Ok, so what’s the secret?
- Once a week, jog a mile with a kettle bell that is equal to 30% of your own weight in a briefcase carry. Switch arms from time 2/
to time. Start slow.
As a performance guy, and in consensus with many of the other performance folks who have already commented: This is an insanely hard physical task to do. The average Joe off the street SHOULD NOT try this.
When challenged, the caveat was raised: “I said 3/
Honored to be a part of the work led by @polybioRF and @microbeminded2 published in @TheLancetInfDis discussing actionable strategies to adequately address SARS-CoV-2 persistence in #LongCovid. This paper covers discourse on how to look for and measure severity of persistence 1/
so that it can be used as an outcome measure in clinical trials, discussion about promising antiviral and monoclonal agents: what has the best chance of working and when combination therapies should be considered, the critical need for more sophisticated clinical trial designs 2/
such as adaptive platform trials and guidance on the recruitment of diverse populations into clinical trials: these drugs affect people with different hormonal profiles and different genetic profiles differently. To offer true precision medicine for pw LC, representation in 3/